Medical Hypotheses (2008) 70, 748–749
http://intl.elsevierhealth.com/journals/mehy
Play with online virtual pets as a method to
improve mirror neuron and real world functioning
in autistic children
Eric Lewin Altschuler
*
Department of Physical Medicine and Rehabilitation, University of Medicine and Dentistry of New Jersey,
University Hospital, B-403, 150 Bergen Street, Newark, NJ 07103, United States
Brain and Perception Laboratory, University of California, San Diego, La Jolla, CA, United States
Received 15 July 2007; accepted 16 July 2007
Summary Autism is a severe disease with no known cause and no cure or treatment. Recently, ourselves and
subsequently others found that so-called ‘‘mirror neurons’’ – neurons that respond not only when a person moves, but
upon observation of movement in another – are dysfunctional in autistic children. Here I suggest an easy, simple,
inexpensive and fun method to improve mirror neuron functioning in autistic children, increase appreciation in autistic
children for the theory of mind and thinking of others, and most importantly hopefully to improve real world
functioning: play with virtual online pets that are the ‘‘embodiment’’ of a stuffed animal the child has. Adoption and
then care and play with online pets forces, in a fun way, one to think about the world through the eyes and needs of the
pet. A simple method to test this play with online virtual pet therapy is described.
c 2007 Elsevier Ltd. All rights reserved.
Introduction
The cause of autism is not known, and there is no
known cure or dramatically effective treatments.
Ourselves and subsequently others found that socalled ‘‘mirror neurons’’ – neurons that respond
not only when a person moves, but upon observation of movement in another – are dysfunctional
in autistic children. I here suggest an easy, simple,
inexpensive and fun method to improve mirror neuron functioning in autistic children, increase appre-
* Tel.: +1 973 972 5439; fax: +1 973 972 5725.
E-mail address: [email protected]
ciation in autistic children for the theory of mind
and thinking of others, and most importantly hopefully to improve real world functioning: play with
virtual online pets. Adoption and then care and
play with online pets forces, in a fun way, one to
think about the world through the eyes and needs
of the pet. A simple method to test this play with
online virtual pet therapy is described.
The mu EEG wave activity is defined as the integrated power in the 8–13 Hz range measured from
the motor cortices, when these cortices are at
rest. Mu wave suppression relative to this baseline
activity can be quantified by comparing with the
mu activity when a subject is moving their fingers
– e.g., opposition of the thumb to fingers.
0306-9877/$ - see front matter c 2007 Elsevier Ltd. All rights reserved.
doi:10.1016/j.mehy.2007.07.030
Play with online virtual pets as a method to improve mirror neuron and real world functioning
We showed that the mu activity is also blocked,
suppressed, not only by movement itself, but by
observation of movement, e.g., a video tape of another person opposing their thumb to fingers [1].
Subsequently ourselves [2] and then others subsequently replicated this finding [3–5]. Furthermore,
ourselves [2] and then others [3,5] showed that
autistic individuals do not show mu wave suppression upon observation of movement, but do upon
moving themselves. This mu wave suppression upon
observation of the movement of another person,
may be a correlate in humans of so-called ‘‘mirror
neurons’’ found by Rizzolatti and colleagues in cortical area F5 macaque monkeys found to respond
not only to movement of the monkey, but observation of movements made by another monkey (Ref.
6 and references therein). Thus, autistic individuals
may have a poorly functioning mirror neuron system [2].
One treatment strategy for autism might then be
to utilize biofeedback to try to get autistic individuals to suppress the mu wave to observation of
movement. However, such an approach might not
generalize easy to other real world functional activities. Thus I suggest here play with virtual online
pets as a therapy approach in autism. After buying
a stuffed animal the child then goes online and
‘‘adopts’’ an online version of the pet (see Ref. 7
for an example). Immediately this approach brings
in theory of other minds as the child must associate
the real stuffed animal they have with its online virtual ‘‘embodiment’’. After adopting the pet online,
the child must then provide housing, food, medical
care and entertainment for their virtual pet. The
online site encourages not only subsistence in these
spheres but ones that are most appropriate and
enjoyable for a given online pet. For example, large
animals appreciate a large or even outdoor room.
Thus, online play with virtual pets illustrates,
encourages and provides practice and reinforcement in situations where having a theory of other
minds is beneficial. Kids get virtual money to obtain
things for their pet by playing games and contests
online. The need to get money to get things for
one’s online virtual pet then provides a higher level
of thinking in terms of theory of other minds.
749
Testing the hypothesis
Like any proposed treatment in medicine, the only
way to test ownership of virtual online pet therapy
for autism would be to show its efficacy in a randomized, controlled trial. In this case, that is easily
done in principle: measure functional interactions
of autistic children of a given homogeneous IQ
range. Then randomize the children to virtual online pet therapy or a control therapy. After some
months then remeasure the functional interactions. If ownership and play with virtual online pets
– an easy, safe inexpensive and fun therapy – is
fond beneficial it would be a useful addition to
the treatment armamentarium for autism.
Acknowledgement
I thank Benjamin and Daniel Altschuler for helpful
discussions.
References
[1] Altschuler EL, Vankov A, Wang, V, Ramachandran VS, Pineda
JA. Person see, person do: human cortical electrophysiological correlates of monkey see monkey do cells. Poster
session presented at the 27th annual meeting of the society
for neuroscience, New Orleans, LA; 1997.
[2] Altschuler EL, Vankov A, Hubbard EM, Roberts E, Ramachandran VS, Pineda JA. Mu wave blocking by observer of
movement and its possible use as a tool to study theory of
other minds. Poster session presented at the 30th annual
meeting of the society for neuroscience, New Orleans, LA;
2000.
[3] Nishitani N, Avikainen S, Hari R. Abnormal imitation-related
cortical activation sequences in Asperger’s syndrome. Ann
Neurol 2004;55:558–62.
[4] Muthukumaraswamy SD, Johnson BW, McNair NA. Mu rhythm
modulation during observation of an object-directed grasp.
Cogn Brain Res 2004;19:195–201.
[5] Oberman LM, Hubbard EM, McCreery JA, Altschuler EL,
Ramachandran VS, Pineda JA. EEG evidence for mirror
neuron dysfunction in autism spectrum disorders. Cogn Brain
Res 2005;24:190–8.
[6] Rizzolatti G, Craighero L. The mirror-neuron system. Annu
Rev Neurosci 2004;27:169–92.
[7] http://www.webkinz.com; 2007 [accessed 15.07.07].
THE JOURNAL OF ALTERNATIVE AND COMPLEMENTARY MEDICINE
Volume 17, Number 7, 2011, pp. 655–659
ª Mary Ann Liebert, Inc.
DOI: 10.1089/acm.2010.0436
Case Report
Can Dogs Prime Autistic Children for Therapy?
Evidence from a Single Case Study
Karine Silva, PhD,1,2* Rita Correia, BS,3* Mariely Lima, MD,1,2
Ana Magalhães, PhD,4 and Liliana de Sousa, PhD1,2
Abstract
Background and objectives: Canine-assisted therapy has been receiving growing attention as a means of aiding
children with autism spectrum disorder (ASD). Yet, only limited studies have been done and a great deal of
literature related to this intervention is anecdotal. The present study aims at providing additional quantitative
evidence on the potential of dogs to positively modulate the behavior of children with ASD.
Settings/location, subjects, and interventions: A 12-year-old boy diagnosed with ASD was exposed, at his usual
treatment location (the Portuguese Association for Developmental Disorders and Autism at Vila Nova de Gaia,
Portugal), to the following treatment conditions: (1) one-to-one structured activities with a therapist assisted by a
certified therapy dog, and (2) one-to-one structured activities with the same therapist alone (as a control). To
accurately assess differences in the behavior of the participant between these treatment conditions, the therapist
followed a strict research protocol. The behavior of the participant was continuously video-recorded during both
treatment conditions for further analysis and comparison.
Treatment outcomes: In the presence of the dog, the participant exhibited more frequent and longer durations of
positive behaviors (such as smiling and positive physical contacting) as well as less frequent and shorter
durations of negative behaviors (such as aggressive manifestations).
Conclusions: These findings are in accordance with previous experimental work and provide additional support
for the assertion that dogs can prime autistic children for therapy. Ultimately, this study may contribute toward
a change for full acceptance of canine-assisted therapy programs within the medical milieu. Additional studies
using a similar research protocol on more autistic children will certainly help professionals to work on the most
effective methods to individually serve this population through canine-assisted interventions.
Introduction
T
he autism spectrum disorder (ASD) is a neurodevelopmental childhood condition characterized by variable
difficulties in social behavior and communication, restrictive
interests, and repetitive activities.1 According to recent epidemiological surveys, 1 child in 166 is affected with this disorder, which represents a major increment compared to
assessments from a few decades ago (4 children in 10,000).2
As the prevalence of ASD has increased, so has the
number of therapeutic modalities used to treat its symptoms
(e.g., educational programs3; early behaviorally based intervention programs4; pharmacological interventions5). To date,
however, none has proved dramatically effective, and com-
plementary methods have been suggested.1 For example, the
introduction of a dog into psychodynamic therapy sessions
has been receiving growing attention as a legitimate means
of aiding this population.6 In a study involving animalassisted therapy and children with autism, Redefer and
Goodman showed that supervised interactions with dogs
increased prosocial behaviors, decreased self-absorption,
and lessened stereotyped behaviors.7 Similarly, Martin
and Farnum found that children with autism exhibited a
more playful mood, were more focused and were more
aware of their social environments when in the presence of
a dog.8
Although encouraging, the findings above have not been
replicated by further experimental work, and full acceptance
1
Departamento de Ciências do Comportamento, Instituto de Ciências Biomédicas Abel Salazar, Porto, Portugal.
Ânimas, Porto, Portugal.
3
Departamento de Psicologia Clı́nica, Instituto Superior de Psicologia Aplicada, Lisbon, Portugal.
4
Instituto de Biologia Molecular e Celular, Porto, Portugal.
*These authors contributed equally to this work.
2
655
656
of canine-assisted therapy programs into the medical milieu
is still depending on additional studies incorporating rigorous scientific protocols. Following this line of reasoning, the
single case study here presented was planned to explore the
effect of the presence of a certified therapy dog on the behavior of a boy diagnosed with autism during one-to-one
activities with a therapist.
Materials and Methods
The participant
The participant in this study was a 12-year-old boy diagnosed with DSM-IV autistic disorder through observation
conducted by a health care professional (along with a semistructured interview of the caregivers). The boy was recruited via the Portuguese Association for Developmental
Disorders and Autism and was selected, among the younger
patients who were not being followed by a psychologist and
had no allergies to dogs, by a simple random sampling
procedure (picking a name out of a box). His clinical reports
referred a long history of language delays, poor social skills,
aggressive behaviors, anxiety, as well as obsessions about
magazines and newspapers. Permission for participant inclusion in the study was obtained through informed consent
provided by the caregiver.
The therapy dog
The dog, a female Labrador retriever, was recruited, trained,
and certified as a therapy dog by Ânimas. This Portuguese
association, member of the Assistance Dogs International Inc.
(ADI), tests the animals primarily for temperament, carefully
assessing their potential to work safely and comfortably within
institutionalized settings. Evaluation also includes a veterinary
check, proof of vaccinations, and good health. All training
programs use positive reinforcement (reward-based) approaches, and follow the minimum standards and ethics developed by the ADI Standards and Ethics Committee.9
The therapist
The therapist involved in this study was dual qualified as
a psychologist and as a certified therapy dog handler. She
took specific training from Ânimas and passed an evaluation
of knowledge about how to mediate the interaction of dogs
appropriately with various client populations, namely, autistic children. As handler, she was obliged to be in full and
direct control of the dog at all times.
The therapist was selected for this experiment due to her
vast experience on animal-assisted interventions, thus minimizing the effect of extraneous variables (such as her own
motivation throughout the entire duration of the study) on
the behavior of the participant.
SILVA ET AL.
with the therapist without the presence of the therapy dog,
serving as a control (T). Each week, the participant was exposed to T and Tdog sessions, for 45 minutes, on different
and nonconsecutive days. All sessions were video-recorded
for data-coding purposes and were held at the participant’s
usual treatment place.
Sessions were preceded by a 15-minute acclimatization period during which the therapist either (1) modeled and verbally encouraged approaching and exploring the dog through
touching, holding, and petting activities (prior to Tdog sessions); or (2) followed the participant’s initiatives and gave no
indications about any particular task (prior to T sessions).
To assess differences in the behavior of the participant
between the two treatment conditions (T and Tdog) accurately, the therapist followed a strict research protocol instead of a more versatile agenda (as described in previous
studies [e.g.8]). This protocol included structured one-to-one
activities previously defined to promote prosocial behaviors
in the participant (e.g., playing ball with the participant,
questioning the participant about specific events). Both the
order of presentation and the duration of activities were
maintained across sessions so that the unique difference between the two experimental conditions was the presence of
the dog, used by the therapist as a facilitator to communication with the participant. Fifteen (15) minutes of each
session, including 5-minute periods (randomly selected by
an independent researcher) of the initial, middle, and last
parts of the video recordings, were analyzed and the following variables were coded: (1) negative behaviors of the
participant, including physical aggressive behavior, verbal
aggressive behavior, repetitive smelling, obsessive staring,
grabbing behavior, as well as self-absorption; and (2) positive behaviors of the participant, including affectionate behavior, play, visual contact, as well as smiling. These
variables were selected based on the clinical reports of the
participant along with naturalistic observations (i.e., observations of behaviors as they occur naturally, without any
intervention) conducted at the participant’s treatment place,
prior to the beginning of the study. Their categorization (into
positive and negative) followed previous studies assessing
the effects of interaction with dogs on children with autism
(e.g.7,8). The definitions of all recorded behaviors are presented in Table 1. Coding was performed using the Observer
XT Software version 7.0 (Noldus Information Technology,
Wageningen, The Netherlands), which allows an automatic
reading of duration and frequency of behavioral events.
Interobserver reliability, using Pearson’s r correlation, was
assessed between two coders who independently scored all
video recordings. Obtained values of r were above 0.9 for the
frequencies and durations of all the behaviors of the participant recorded throughout the study.
Statistical analysis
Experimental design and data collection
An experimental design, approved by both clinical (Portuguese Association for Developmental Disorders and Autism) and academic (Instituto Superior de Psicologia
Aplicada) units, was planned to expose the participant to
two treatment conditions: structured sessions of one-to-one
activities with the therapist in the presence of the therapy
dog (Tdog) and structured sessions of one-to-one activities
Inferential statistics used in the analysis of group data are
generally considered invalid for use with data from singlecase experimental designs.10 Instead, randomization tests are
commonly used as valid statistical analyses for all designs that
incorporate a random procedure for assigning treatments to
subjects or observation periods, as was the case in the present
study.10–12 Therefore, the recorded frequencies and durations
of the behaviors exhibited by the participant in the two
CAN DOGS PRIME AUTISTIC CHILDREN FOR THERAPY?
657
Table 1. Positive and Negative Behavioral Measures Coded in the Participant
Behavioral measures
Definitions
Negative
Physical aggressive behavior
toward the therapist
Physical aggressive behavior
toward inanimate objects
Verbal aggressive behavior
Repetitive smelling
Obsessive staring
Grabbing behavior
Self-absorption
Engaging in actions (other than verbalizations) causing pain and physical harm to
the therapist (including biting, pushing, and hitting)
Engaging in actions causing damage to inanimate objects (including biting,
pushing, and hitting)
Using hostile words to insult, threaten, anger, or intimidate the therapist
Inhaling the odor of the therapist or inanimate objects with direct contact
Gazing fixedly and steadily at journals and magazines
Taking possession of journals and magazines by force
Adopting an absent expression, appearing to be totally emotionally detached
Positive
Affectionate behavior
Play
Visual contact
Smiling
Accepting and giving physical contact from/to the therapist (including hugs and kisses)
Initiating and maintaining symbolic and/or organized games with the therapist
Looking directly into the eyes of the therapist
Change in facial expression by turning up the corners of the mouth/spreading the lips
treatment conditions (Tdog and T sessions), over a period of
15 minutes, were compared by means of a randomization test
provided by Todman and Dugard13 and run using the Statistical Package for the Social Sciences 17.0 (SPSS Inc.).
Results
Negative behaviors
The results presented in Table 2A show that the frequencies
and durations of both physical aggressive behavior toward
inanimate objects and verbal aggressive behavior toward the
therapist were significantly lower in the sessions that included
the therapy dog (Tdog sessions) than in those that did not (T
sessions). Similarly, the frequency and duration of grabbing
behavior were significantly lower in Tdog than in T sessions.
Also, the duration of absorption was found to be significantly
lower in Tdog than in T sessions. Finally, pronounced differences in the frequency and duration of obsessive staring between were also observed (both being lower in Tdog than in T
sessions), but no significance was found.
Table 2. Mean ( – Standard Error) Frequencies and Durations of the Behaviors Exhibited
by the Participant in the Two Treatment Conditions (with [Tdog]
and Without [T] the Presence of the Dog), Over a Period of 15 Minutes
Treatment condition
Behavioral measures
A. Negative
Physical aggressive behavior toward
Physical aggressive behavior toward
Physical aggressive behavior toward
Physical aggressive behavior toward
Verbal aggressive behavior (f)
Verbal aggressive behavior (d)
Repetitive smelling (f)
Repetitive smelling (d)
Obsessive staring (f)
Obsessive staring (d)
Self-absorption (f)
Self-absorption (d)
Grabbing behavior (f)
Grabbing behavior (d)
B. Positive
Affectionate behavior (f)
Affectionate behavior (d)
Play (f)
Play (d)
Visual contact (f)
Visual contact (d)
Smiling (f)
Smiling (d)
the therapist (f)
the therapist (d)
inanimate objects (f)
inanimate objects (d)
Tdog
T
p
5.54 – 3.21
72.88 – 20.19
0.67 – 0.49
6.87 – 9.10
3.17 – 1.74
7.17 – 2.81
28.87 – 17.15
95.31 – 20.11
11.01 – 4.72
347.71 – 39.60
17.67 – 5.09
485.91 – 28.75
5.67 – 1.54
15.43 – 3.41
10.38 – 6.56
100.34 – 21.22
2.5 – 0.34
30.09 – 11.71
4.83 – 2.07
11.32 – 2.39
37.60 – 10.27
121.99 – 15.01
20.11 – 6.26
406.69 – 25.96
19.99 – 7.10
571.64 – 23.00
9.00 – 1.29
30.01 – 5.99
0.091
0.082
0.025*
0.019*
0.036*
0.041*
0.462
0.471
0.051
0.053
0.886
0.036*
0.049*
0.048*
21.83 – 2.81
50.11 – 17.16
5.02 – 0.49
23.45 – 3.92
55.67 – 10.60
193.01 – 37.51
5.00 – 1.57
8.18 – 3.57
11.83 – 1.60
21.43 – 4.78
3.91 – 0.95
19.01 – 4.60
31.83 – 5.24
117.81 – 24.23
0.67 – 0.49
2.34 – 1.86
0.030*
0.051
0.094
0.101
0.015*
0.035*
0.017*
0.016*
(f), frequency; (d), duration in seconds.
*Indicates significant differences between the two treatment conditions (randomization tests).
658
Positive behaviors
The results presented in Table 2B show that the frequencies and durations of both visual contact and smiling were
significantly higher in the sessions that included the therapy
dog (Tdog sessions) than in those that did not (T sessions).
Affectionate behavior was also significantly more frequent in
Tdog than in T sessions).
Discussion
Compared to the control condition (T sessions), the presence of the dog during one-to-one activities with the therapist was not only associated with a higher engagement of the
participant with the therapist but also with a lower level of
negative behaviors, namely, aggressive and obsessive manifestations, which is in accordance with preliminary experimental work conducted by Redefer and Goodman7 as well as
Martin and Farnum.8 See also Beck and Ketcher.14
One could question whether the poorer behavioral scores
recorded during T sessions might have been motivated by
some disappointment due to the absence of the dog. In a report describing the use of feral cats as adjuncts to psychotherapy, for example, Wells and colleagues mentioned that
clients sometimes verbalized disappointment, because the cats
were not present when they arrived for a scheduled appointment.15 To these authors, however, unpredictability and
potential for emotional risk constitutes a positive attribute of
therapy as ‘‘an accurate mirror of life as it truly exists.’’
Moreover, these same authors mention an expectation and
confidence that frustration will be tolerated without the fear of
permanent loss or catastrophe, thus allowing the therapist to
use the animals as effective motivators of positive behavior
and communication. Regarding the present study, it is possible that disappointment might have contributed to the obtained results, but it certainly did not totally account for them.
The participant was never informed of the days of the sessions
(which were randomized within each week), nor of the continuity of the study, and so expectation, and by consequence
disappointment, might have been minimal. Also, the reduced
number of sessions conducted (N = 6 for each treatment condition) likely prevented a strong emotional attachment with
the animal. Hence, differences observed between the two
treatment conditions were most probably due to a positive
modulation of the behavior of the participant (in the presence
of the dog) rather than the result of a negative reaction caused
by the absence of the animal.
At this point, one could also question whether the observed positive results are attributable to the presence of the
dog per se or to the introduction of a novel element into the
experimental environment. Recent research does, however,
point to specific benefits of dogs. For example, in a study
exposing children with ASD to different elements (a toy, a
stuffed dog, and a live dog) while interacting with a therapist, researchers found that children were significantly more
compliant and involved during therapy in the presence of
the animal.8 The current understanding of the role of pets in
modulating psychoneuroendrocrine responses also seems to
support the effect of dogs per se. Studies with hospitalized
children, for instance, show that exposure to a friendly animal can induce a release of endorphins and a relaxation response (as indicated, for example, by reduced heart rate,
reduced blood pressure, and reduced respiratory rate),
SILVA ET AL.
leading to a feeling of well-being that improves the outcome
of therapeutic interventions.16
Conclusions
Although the present study did not aim at evaluating
canine-assisted therapy per se (the therapist used a research
protocol, not a therapy protocol), it provides quantitative
indications for the potential of dogs to prime children with
autism so that they may be able to participate in therapeutic
interactions better and respond more effectively to the demands of therapy (as also previously reported by Redefer
and Goodman7). Given that maintenance and generalization
have long been recognized by clinicians as persistent problems in this population,17,18 further research should focus on
assessing whether positive effects can (1) generalize to therapeutic contexts that do not involve the presence of a dog,
and (2) be maintained outside a therapeutic environment.
Moreover, given the marked phenotypic diversity in ASD,
additional case studies are necessary for the characterization
of individual differences that likely exist across children with
ASD in their responses to canine-assisted therapy. With such
studies, professionals could work on the delineation of the
most effective methods to individually serve this population
through animal interventions.
Acknowledgments
The authors are grateful to Dr. Helena Vidal for videotaping and to the Portuguese Association for Developmental
Disorders and Autism for the permission to conduct the
study. Also, the authors are grateful to the members of
Ânimas, especially Sebastião Castro Lemos and Scooby.
Fundação para a Ciência e a Tecnologia funded the participation of Mariely Lima (FCT-SFRH/BD/44748/2008), Karine
Silva (FCT-SFRH/BPD/37017/2007), and Ana Magalhães
(FCT-SFRH/BPD/19200/2004).
Disclosure Statement
No competing financial interests exist.
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13. Todman JB, Dugard P. Single-Case and Small-n Experimental Designs: A Practical Guide to Randomization Tests.
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15. Wells S, Rosen W, Walshaw S. Use of feral cats in psychotherapy. Anthrozoos 1997;10:125–130.
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16. Braun C, Stangler T, Narveson J, Pettingell S. Animalassisted therapy as a pain relief intervention for children.
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17. Zifferblatt SM, Burton SD, Homer R, White T. Establishing
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Address correspondence to:
Karine Silva, PhD
Departamento de Ciências do Comportamento
Instituto de Ciências Biomédicas Abel Salazar
Largo Prof. Abel Salazar, 2
Porto 4400-003
Portugal
E-mail: [email protected]
THE JOURNAL OF ALTERNATIVE AND COMPLEMENTARY MEDICINE
Volume 19, Number 2, 2013, pp. 73–80
ª Mary Ann Liebert, Inc.
DOI: 10.1089/acm.2011.0835
Review Articles
Use of Assistance and Therapy Dogs for Children
with Autism Spectrum Disorders:
A Critical Review of the Current Evidence
Alessandra Berry, PhD, Marta Borgi, MS, Nadia Francia, PhD,
Enrico Alleva, PhD, and Francesca Cirulli, PhD
Abstract
Background: Autism spectrum disorders (ASD) are characterized by deficits in social reciprocity and communication, and by unusually restricted, repetitive behaviors. Intervention strategies based on the exploitation of
the emotional aspects of human–dog relationships hold the potential to overcome the difficulty of subjects with
ASD to relate and interact effectively with others, targeting core symptoms of this disorder.
Methods: This review summarizes the results of six published studies on the effects of brief interactions with
dogs and the effects of introducing dogs in families with a child diagnosed with ASD, with an emphasis on social
behaviors and language use. Furthermore, the possible mechanisms responsible for the beneficial effects observed are discussed.
Conclusions: Although the studies described here are encouraging, further research with better designs and
using larger samples is needed to strengthen translation of such interventions to the clinic. In addition, potential
applications of analyzing child–dog interactions are highlighted to screen for early signs of the disorder.
Disorders (DSM IV) and on the International Statistical
Classification of Diseases and Related Health Problems,2,7
implies impairments in three behavioral domains: (1) social
interaction; (2) language, communication, and imaginative
play; and (3) restricted range of interests and activities. The
onset of the disease must be before the age of 3 years.
Autism is recognized as a neurobiological condition involving central nervous system dysfunctions with a strong
genetic basis, involving multiple, interacting genes, as confirmed from twin and family studies.8–11 However, the precise etiology of ASD still remains unknown because of the
complex behavioral phenotypes and multigenic factors
characterizing this disorder. In addition, exposure to environmental modifiers might contribute to variable expression
of autism-related traits.12 Indeed, recent studies suggest
that programming effects on the developing offspring,
resulting from stressful experiences, maternal diet and
infections, advanced parental age, prematurity, and low
birth weight—just to mention a few—might act through
epigenetic mechanisms resulting in critical determinants
of disease ‘‘predisposition,’’ including autism.6,12–15 By contrast, intensive behavioral interventions carried out during
early childhood have been shown to decrease symptom
severity.16,17
Introduction
I
n 1943, Leo Kanner first described children who lacked
interest in other people, using the term ‘‘early infantile
autism.’’ One (1) year later, Hans Asperger independently
reported of a group of children characterized by similar
behavioral features but with milder severity and higher intellectual abilities.1
Autism is the prototypical form of a spectrum of related,
complex, neurodevelopmental disorders referred to as autistic spectrum disorders (ASDs), also known as pervasive
developmental disorders (PDDs). These include autism,
Asperger syndrome, and atypical autism,2 and it has been
estimated that they affect 1 child in about 150 children,3 although several factors may lead to an underestimation of the
prevalence.4 ASDs are strongly biased toward males (with a
male/female ratio of 4:1 for classic autism), suggesting a
potential involvement of perturbations in the typical trajectory and maturation of the sexually dimorphic brain in the
etiology of this disease.3,5,6 Impairments in reciprocal social
interaction and deficits in age-specific play patterns and
symbolic behavior are key features indicative of autism in
infants and preschoolers. In particular, a diagnosis of autism,
based on the Diagnostic and Statistical Manual of Mental
Section of Behavioral Neurosciences, Department of Cell Biology and Neurosciences, Istituto Superiore di Sanità, Rome, Italy.
73
74
A growing number of therapeutic approaches exist for the
management of infantile autism.16,18 Some of these involve
developmental/behavioral strategies; others are based on
sensory-integration or social skills training, whereas pharmacologic therapies are not specifically meant to target
the core symptoms of ASD, but rather to act on some psychiatric aspects associated with this pathology (hyperactivity, inattention, aggression, irritability, and self-injurious
behaviors).16,19–24 Intervention programs based on behavioral strategies, such as the Lovaas program,25 have shown to
successfully improve communication, social skills, and
management of ‘‘problematic’’ behaviors, and currently
represent the most effective methods for ASD management.26 However, despite the large number of therapeutic
approaches, at present, neither proven therapies nor preventive measures exist for the universal treatment of infantile
autism. Therefore, further research and the development of
individualized therapies for the ASD population appear
imperative.
It is possible to hypothesize that intervention strategies
based on exploiting the emotional aspects of the relationship
with a dog might represent an effective tool to dampen
withdrawal of children with ASD by targeting some of the
core symptoms of this disorder. The simple and interpretable
pattern of movements that characterizes dogs might facilitate
the engagement of children with ASD in structurally simple
social actions that do not require the interpretation of verbal
cues and are highly repeatable and predictable (e.g., throw,
fetch and retrieve play, walking the dog on a leash, giving a
hand command).27–29 Sams and colleagues suggest that acquiring the ability to interpret and respond to the social and
behavioral cues of dogs may provide a bridge toward
learning to interpret the more subtle behavior of human
beings.28 It has also been suggested that dogs, representing a
powerful multisensory stimulus—strong and clear sounds, a
vivid visual impression, a special smell, and a stimulation to
touch—might target the low sensory and affective arousal
levels characterizing children with ASD.29 In this context, it
is worth noticing that the Denver Model, a therapeutic intervention that integrates applied behavior analysis with
developmental and relationship-based approaches,30,31 involves the use of ‘‘sensory social routines’’ (i.e., repeated
dyadic interactions, based on pleasurable activities, that have
strong sensory, movement, and social foundations).19 Thus,
dogs appear to be good candidates to assist therapists in
building such pleasurable dyadic interactions.
Generally, dogs are receiving increasing attention because
of their potential use in various therapeutic/activity programs (therapy dogs), also known as Animal-Assisted
Interventions (AAI), aimed at targeting a large number of
health-related problems in different clinical populations.32,33
Different reports have also shown the overall ability of
assistance dogs (which are owned by individuals with different disabilities) to act as social catalysts, enhancing social
interactions and increasing social networks, especially for
those with severe disabilities, who very often suffer social
discrimination.34–38
Despite the growing body of evidence showing the potential of interaction with dogs to benefit people, including
those with disabilities, only a limited amount of studies have
specifically focused on the role of child–dog relationships in
the ASD population. In addition, most of these studies are
BERRY ET AL.
lacking a standard methodology, making it difficult to
evaluate the efficacy of the intervention.
The aim of this review is to provide a critical and systematic reading of the literature assessing the effects of
therapy and assistance dogs on children with ASD and the
possible overall reflection on the welfare of their families.
Targeting Autism Through the Interaction with Dogs:
A Review of the Literature
Although the first reports on the beneficial effects of dogs
with severely withdrawn children date back to the 1960s
with the experience of Boris Levinson,39 successive studies
aimed at evaluating the efficacy of systematic interactions of
children affected by ASD with dogs are scarce. In the late
1980s, Redefer and Goodman29 were pioneers in the scientific
approach of the effects of interaction with dogs on children
with autism, although a systematic review of the literature
revealed that it was only from 2000 that this field of research
has been receiving growing attention, as reflected in the increasing amount of studies published.
For the purpose of this review, only experimental studies,
semistructured interviews, and case studies, published in the
English language in peer-reviewed journals, have been taken
into account. Qualitative (anecdotal) studies were excluded,
as well as published PhD theses and conference proceedings.
The literature search included the following databases:
PubMed, Google Scholar, ScienceDirect, and ERIC. Reference
lists in studies and review articles about this intervention
were also consulted to identify potentially relevant studies.
Participants were children (age range: 3–15) diagnosed with
a PDD, according to DSM-IV. Research that did not entirely
focus on autistic disorders (i.e., large range of clinical syndromes, small number of people with autism) was excluded.
Interventions involving therapy were distinguished from
those involving assistance dogs. As for therapy dogs, interactions occurred in the presence of the therapist, who followed a
predetermined research protocol that included structured oneto-one activities designed to stimulate social behaviors and
language use. Assistance dogs were introduced into the families
with the primary function to ensure child safety, at home and
in public, by inhibiting children from bolting or moving
dangerously (e.g., walking off the sidewalk).40
Results of this literature search revealed that only six articles met the inclusion criteria: two of them describe the
effects of assistance dogs (Table 1) and four interventions
involve the effects of therapy dogs (Table 2) on children with
PDD, including ASD.
Effects of Interventions
Assistance dogs
When studying the effects of the introduction of assistance
dogs on the general welfare of families with children affected
by ASD, Burrows and colleagues41 observed that the contribution of these animals extended beyond children’s
physical safety to therapeutic and communicative domains.
In fact, the integration of assistance dogs resulted in beneficial effects on children’s behavior with decreased anxiety and
anger, increased calmness, reduction in the number of
emotional outbursts (tantrums), and more manageable bedtime routines. These authors also report an additional sense
75
of security for the parents, especially at night, which improved their quality and quantity of sleep and their sense of
independence. In addition, all the members of the family
experienced an increase in the social acknowledgment perceived, thanks to the presence of the assistance dog. In fact,
the dog became the focus of attention, alleviating some of the
embarrassment and stress felt by the parents and the siblings
of the autistic child and helping the whole family to integrate
into the community.41
A different study focused on the specific effect of assistance dogs in regulating a physiologic response to stress in
autistic children. Viau and colleagues42 measured physiologic variables (i.e., cortisol levels) before, during the staying
of the dogs, as well as after they were removed from the
families. Authors found that the cortisol awakening response
(CAR) was decreased upon the introduction of dogs (acute
effect), whereas it rose again when the animals were removed from the families (long-term effects). Indeed, these
results show that, in children with ASD, CAR is sensitive to
the presence of assistance dogs, suggesting that this measure
might represent a reliable physiologic marker of a positive/
negative psychologic state. Interestingly, parents also reported a decrease in the number of problematic behaviors
(such as self-stimulation, repetitive behaviors, and tantrums)
when the dogs were living in the families, which lends
support to the potential behavioral benefits of assistance
dogs for children with ASD.42
It is important to stress that, in both of these studies, the
effect of an assistance dog on children with problematic behaviors was assessed by means of semistructured interviews
and a questionnaire distributed to parents, possibly reflecting the parents’ satisfaction more than an actual modification
in their child’s behavior. The analysis of behavioral changes
based on systematic observations might represent a more
useful and comprehensive approach.
Therapy dogs
ASD, autism spectrum disorder.
Viau et al.42 Diagnosis: ASD
Longitudinal, repeatedmeasures (pre- and
N = 42
post-test) design
Age: range 3.6–14.8
Sex: 37 M, 5 F
Setting: home
Participants reported improved child’s safety (at
home and in public), motor function, calmness,
and compliance with the parents’ directives.
Participants also reported an improvement in
the daily routines, and increased positive
social acknowledgments.
Number of problematic behaviors reported by
Placement of an assistance Basal salivary cortisol;
parents decreased after the introduction of
problematic behaviors
dog with the families of
the dog. Cortisol levels prior and after the
(e.g., self-stimulation,
autistic children
introduction of the dog were the same; CAR
repetitive, disruptive
(cortisol awakening response) was found to
behaviors, tantrums)
be considerably reduced when dogs were
present and rose again when dogs were
removed from the families.
Diagnosis: ASD
N = 10
Age: range 4.5–14
Sex: 7 M, 3 F
Setting: home
Burrows
et al.41
Semistructured interview Placement of an assistance Perceived safety and
well-being for
dog with the families of
for children’s parents;
families
autistic children
ethological observations
Outcomes
Animal-related situations
Design
Participants
Authors
Table 1. Studies Involving Assistance Dogs on ASD Population
Main results
ASSISTANCE AND THERAPY DOGS FOR CHILDREN WITH ASD
Interventions with therapy dogs rely upon brief interactions with these animals (AAI). All the interventions reviewed here occurred in the presence of the therapist, who
followed a predetermined research protocol that included
structured one-to-one (individual) activities designed to
stimulate social behaviors and language use. In all cases,
results were encouraging since interaction with dogs was
able to dampen social isolation and withdrawal in children.
Redefer and Goodman29 observed that, following the introduction of a friendly dog into a therapeutic session, seriously withdrawn children with ASD showed a sharp
increase in the frequency of both verbal and nonverbal social
behaviors; this increase was directed toward the dog and the
therapist and was paralleled by a decrease in children’s
withdrawal. This general improvement could still be observed 1 month after dog exposure (follow-up), although in a
smaller proportion. Limitations of this study are the lack of
information about the diagnostic criteria used and the absence of a control condition, which permit singling out
whether the positive effects observed during AAI are simply
due to the introduction of a novel and exciting stimulus (e.g.,
a visiting dog).
Martin and Farnum43 observed children’s social behavior
when they were interacting with a live dog and when
76
Case study
Between 20 and 30 minutes
of occupational therapy
sessions incorporating
animals (i.e., llamas, dogs,
rabbits) or standard
occupational therapy
sessions
Forty-five minutes of structured
sessions of one-to one
activities with the therapist in
the presence of a therapy dog
or without the presence of
the therapy dog
Fifteen minutes of interaction
with a therapist in the
presence of a therapy dog,
a stuffed dog, or a ball
Twenty minutes of
interaction with a
therapist in the
presence of a
therapy dog
Animal-related situations
b
N = 7 PDD not otherwise specified, N = 2 Asperger’s disorder, N = 1 autistic disorder.
Two of the participants carried a secondary diagnosis of cerebral palsy.
ASD, autism spectrum disorder; PDD, pervasive developmental disorders.
a
Diagnosis: ASD
N=1
Age: 12
Sex: M
Setting: outpatient
therapy center
Silva et al.44
Crossover, repeated
measures design
(all participants
experienced all
two conditions)
Crossover, repeatedmeasures design
(all participants
experienced all
three conditions)
Diagnosis: PDDa
N = 10
Age: range 3–13
Sex: 8 M, 2 F
Setting: school
Martin and
Farnum43
Diagnosis: ASDb
N = 22
Age: range 7–13
Sex: not specified
Setting: school
Longitudinal, repeatedmeasures (pre- and
post-test) design
Diagnosis: ASD
N = 12
Age: 5–10
Sex: 9 M, 3 F
Setting: not specified
Redefer and
Goodman29
Sams et al.28
Design
Participants
Authors
Negative behaviors (e.g., physical
and verbal aggressive behaviors,
repetitive behaviors, selfabsorption) and positive behaviors
(e.g., play, visual contact, smiling)
toward the therapist and
inanimate objects
Language use; spontaneous or
prompted social interaction with
humans or animals
Language use and social behaviors
directed toward the therapist and
the dog; nonsocial behavior (i.e.,
hand flapping)
Changes in isolation (play or selfstimulatory activities directed
to self) and social interaction
(any instance of verbal or
nonverbal behavior directed
toward the therapist and the dog
Outcomes
Table 2. Studies Involving Therapy Dogs on PDD/ASD Population
Aggressiveness and self-absorption
less frequent in the sessions that
included the therapy dog; visual
contact, smiling and affectionate
behaviors more frequent in the
sessions that included the
therapy dog.
Increase in social interaction
and decrease in isolation
when the dog was introduced
in therapy sessions. By
follow-up (1 month after the
treatment), social interaction
declined but was still above
baseline and isolation
increased but was still below
baseline.
In the presence of the therapy
dog, children showed a more
playful mood, were more
likely to keep their gaze
focused on the dog, to talk
to the dog and engage the
therapist in discussion
regarding the dog. Children
touched the dog less often
than the ball or stuffed dog.
Children exhibited more
hand flapping in the presence
of the dog.
Children showed greater use of
language and greater social
interactions (number per
minute) in the occupational
therapy sessions incorporating
animals.
Main results
ASSISTANCE AND THERAPY DOGS FOR CHILDREN WITH ASD
playing either with a nonsocial toy (i.e., a ball) or a stuffed
dog. These authors found that children were less distracted,
exhibited a more playful mood, and were more aware of
their social environment when in the presence of the therapy
dog.43 Furthermore, verbal interactions were stimulated by
the presence of the animal: Children were more likely to talk
to the dog, engaging the therapist in discussions regarding
the animal, and speaking less about topics unrelated to the
therapeutic protocol during the dog condition. An increase in
hand flapping was also reported in children exposed to the
therapy dog. Although such a behavior is usually considered
as a stereotypy and therefore viewed as undesirable, the
authors believe that this ‘‘was a mode of expressing excitement and exhilaration.’’43 It is worth noticing that this study
represents a first important attempt to perform a thorough
analysis of the effects of AAI with a dog through the comparison with behavioral changes resulting from the exposure
to different stimuli (ball/stuffed dog).
Similar results were obtained by Sams and colleagues,28
who found that the incorporation of animals (i.e., llamas,
dogs, and rabbits) in a school-based occupational therapy
program was able to encourage language use and social interaction in children with ASD, particularly in comparison to
occupational therapy using standard techniques.
The efficacy of the dogs’ presence in increasing the engagement and decreasing negative behavioral patterns (such
as aggressive and obsessive manifestations) was also confirmed in a very recent case-study by Silva and colleagues.44
In particular, physical and verbal aggressiveness, as well as
self-absorption, were significantly reduced while smiles, visual contacts, and affectionate behaviors were increased.44
Discussion
By being able to respond affectionately to human attention, to elicit prosocial behavior and positive feelings, animals seem to possess a unique capacity to serve as an
emotional bridge in specific therapeutic contexts and to act
as social catalysts.39,45 The forms and manifestations of human bonds with companion animals, particularly with dogs,
have led to their extensive inclusion in different educational
and therapeutic interventions.32,33 In this context, attitude
toward animals is thought to be sufficient to explain some of
the beneficial effects observed, since things that tend to absorb people’s attention in nonthreatening ways are also
known to exert a calming and de-arousing influence.46–48 A
more relaxing environment might, in turn, increase people’s
responsiveness and willingness to communicate. In fact,
different studies reported that, when a dog was present,
children appeared more prone to engage with peers and
adults.49–51
Taken together, the studies reviewed here are encouraging, since the interaction of children affected by ASD with
therapy dogs was able to promote verbal and nonverbal
behaviors, directed both towards the dog and the therapist.28,43,44 Some authors have suggested that being able to
gain access to pets, or to talk about them, might represent a
strong drive for children with ASD to increase social interactions with the therapist.28 In this context, it is important to
stress that language impairment is one of the most pervasive
symptoms characterizing children with ASD early during
postnatal life, and thus being able to act upon such a domain
77
is a main challenge of current behavioral therapies. However, it is also important to take into account that the observed effects on verbal and social skills might in some cases
be related to symptom severity; however, none of the studies
reviewed considered this variable.
The introduction of assistance dogs into the families of
children with ASD allows investigation of the long-term effects of interactions with dogs. In particular, Viau and colleagues42 found a decrease in problematic behaviors in
addition to a specific reduction in a stress-related hormonal
parameter (CAR) only during the time the dog was housed
with the family. By contrast, when the dog was moved away,
the CAR rose again, suggesting that this measure of neuroendocrine activation is very sensitive to the presence of the
dog. These data are in line with a substantial body of evidence showing the overall ‘‘de-arousing effect’’ of human–
animal interactions on human physiology.52–58
The study by Burrows and colleagues found that the introduction of assistance dogs resulted in beneficial effects not
only on children’s behaviors but also on the overall welfare
of the family. Family members reported a sense of security
and independence, a result particularly important when
considering that the impulsivity, hyperactivity, irritability,
and aggressiveness of children with ASD profoundly influence parents’ everyday activities, which eventually result in
extremely stressful and unsafe experiences for the whole
family.41,59,60 Moreover, an increase in the social acknowledgment helped the whole family to feel integrated into the
community. This is indeed a desirable result, considering
that these families have to deal with social isolation and often
experience elevated levels of pessimism and of depressive
symptoms.60–64 Overall, these findings are not surprising and
are in agreement with reports showing the ability of dogs to
act as social catalysts, enhancing social interaction between
people and increasing social networks, especially for those
who have severe disabilities and who very often suffer social
discrimination.34–38
Despite these positive and encouraging results, a note of
caution must be placed here. In particular, it has been reported that the presence of a dog might elicit an increase in
undesirable stereotyped behaviors (such as the hand-flapping43), which are thought to attenuate or intensify the
arousal levels of children with ASD, depending upon the
environmental circumstances.65,66 Almost all individuals affected by autism are characterized by hyper- or hyporesponsiveness to sensory inputs65,67,68; therefore, stimuli that
are experienced as neutral by typically developing children
might result either in highly rewarding or aversive responses
for children with ASD.69 Thus, in the case of assisted interventions with dogs, these might involve individualized
programs tailored to each child’s profile, taking into special
account sensory difficulties and arousal levels.16,67
In conclusion, intervention strategies, based on exploiting
the emotional aspects of the relationship with a dog, can
overcome the inability of children affected by ASD to relate
and interact with others by targeting some of the core
symptoms of this disorder. However, it is important to take
into account that overall most of the AAI programs lack a
standard methodology, and there is a need for basic research
aimed at including larger sample sizes to assess their effectiveness, using randomized controlled trial designs. In addition, studies specifically aimed to examine whether the
78
BERRY ET AL.
effects of contact with dogs are enduring or are strictly related to a continuous exposure to the animal are still lacking.
The use of systematic, detailed studies of behavior should be
encouraged since they can better clarify the effectiveness of
dog-oriented programs on children’ behavior and overall
quality of family life.
Future Perspectives: Child–Dog Interaction as a New
Screening Tool for Early ASD Diagnosis
A diagnosis of autism is achieved early during childhood, with symptoms becoming manifest within the first 3
years of life. However, parents often recall having had developmental concerns between the first and the second
birthdays of their children. This delay in the diagnosis
prevents the possible benefits of an early intervention
during a time window characterized by higher brain and
behavioral plasticity.16,70–73 A promising study reports that
characteristic interaction patterns exist during child–dog
encounters, and this may be effective to diagnose psychiatric disorders including autism. Patients demonstrated
significant diagnosis-specific behavioral differences; in
particular, autism patients looked at the dog for a considerably shorter time, showed longer phases of distancing
behavior from the dog, and stroked it less than other diagnostic groups did (i.e., anxiety disorder, anorexia, bulimia).74 In this scenario, it is possible to hypothesize that
the identification of specific behavioral patterns displayed
during child–dog interactions might provide a novel additional tool for the early diagnosis of some ASD signs, such
as deviation from typical attentive and social behaviors
(gazes, smiles, directed vocalizations) and changes in posture and movements towards the dog.
Acknowledgments
Funding for this study was provided by the Italian Ministry of Health (Italia-USA project 11US/11), Istituto Superiore di Sanità (Research project ‘‘Effects of dog-assisted
therapies on physical and psychological well being in the
institutionalized elderly’’), and the Azienda per i Servizi
Sanitari n. 6 Friuli Occidentale, collaborative project ‘‘Validazione di attività innovative in ambito agricolo finalizzate
all’inserimento sociale, riabilitativo e lavorativo di persone
diversamente abili.’’
Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Francesca Cirulli, PhD
Section of Behavioural Neurosciences
Department of Cell Biology and Neurosciences
Istituto Superiore di Sanità
Viale Regina Elena 299
Rome I-00161
Italy
E-mail: [email protected]
HYPOTHESIS AND THEORY ARTICLE
published: 17 July 2013
doi: 10.3389/fnint.2013.00049
INTEGRATIVE NEUROSCIENCE
Autism as a developmental disorder in intentional
movement and affective engagement
Colwyn Trevarthen 1* and Jonathan T. Delafield-Butt 2
1
2
Department of Psychology, College of Humanities and Social Sciences, University of Edinburgh, Edinburgh, UK
Early Years, School of Education, Faculty of Humanities and Social Sciences, University of Strathclyde, Glasgow, UK
Edited by:
Elizabeth B. Torres, Rutgers
University, USA
Reviewed by:
Antonio Pereira, Federal University
of Rio Grande do Norte, Brazil
Nandakumar Narayanan, Yale, USA
*Correspondence:
Colwyn Trevarthen, Department of
Psychology, College of Humanities
and Social Sciences, University of
Edinburgh, 7 George Square,
Edinburgh EH8 9JZ, UK
e-mail: [email protected]
We review evidence that autistic spectrum disorders have their origin in early prenatal
failure of development in systems that program timing, serial coordination and prospective
control of movements, and that regulate affective evaluations of experiences. There
are effects in early infancy, before medical diagnosis, especially in motor sequencing,
selective or exploratory attention, affective expression and intersubjective engagement
with parents. These are followed by retardation of cognitive development and language
learning in the second or third year, which lead to a diagnosis of ASD. The early signs
relate to abnormalities that have been found in brain stem systems and cerebellum in the
embryo or early fetal stage, before the cerebral neocortex is functional, and they have
clear consequences in infancy when neocortical systems are intensively elaborated. We
propose, with evidence of the disturbances of posture, locomotion and prospective motor
control in children with autism, as well as of their facial expression of interest and affect,
and attention to other persons’ expressions, that examination of the psychobiology of
motor affective disorders, rather than later developing cognitive or linguistic ones, may
facilitate early diagnosis. Research in this area may also explain how intense interaction,
imitation or “expressive art” therapies, which respond intimately with motor activities,
are effective at later stages. Exceptional talents of some autistic people may be acquired
compensations for basic problems with expectant self-regulations of movement, attention
and emotion.
Keywords: autism, motor development, emotional expression, communication, education, therapy
INTRODUCTION TO A DIFFERENT, PSYCHOBIOLOGICAL
APPROACH
“Generality of the problem of Syntax: Not only speech, but all
skilled acts seem to involve the same problems of serial ordering
. . . Analysis of the nervous mechanisms underlying order in the
more primitive acts, may contribute ultimately to the resolution
even of the physiology of logic.”
(Lashley, 1951, pp. 121–122)
“A Different Approach to the Problem: In so far as an organism perceives a given object, it is prepared to respond with reference to it. This preparation-to-respond is absent in an organism
that has failed to perceive.”
(Sperry, 1952, p. 296)
Lashley (1951) and Sperry (1952) observed that perception, intelligent action and thinking depend upon impulses that move the
body purposefully. The animal brain contributes systematic and
serial organization, in time and space, to muscle activity under
expectant perceptual and emotional control. It is always active,
not passively reactive to stimuli. Nor is the human brain ever
animated by thoughts of external events alone. All mental and
behavioral skills depend on preparation to respond with serial
ordering of acts. “The sole product of brain function is motor
Frontiers in Integrative Neuroscience
coordination” (Sperry, 1952, p. 297). This is a psychobiological theory of motives and affects in the mind, clearly articulated
before the advent of the “cognitive revolution” that divorced mind
from vital body in the 1960’s (Miller, 2003).
The motor theory of consciousness was inspired by the
research of Charles Sherrington (1906) on “the integrative action
of the nervous system.” It has support from developmental neurobiology and neuroembryology (Trevarthen, 1986a; Prechtl, 2001),
from ethology of the adaptive action patterns of animals and
how they communicate emotional evaluations for social cooperation (Gallistel, 1980; Marler, 1984; Fentress and Gadbois, 2001;
Panksepp, 2005), and from infant psychology and communication (Trevarthen, 1986b, 2001a, 2009a; Stern, 2000, 2010).
Research focused on cognitive disorders of perceptual information processing, selective awareness, and representational
thinking articulated in language, all of which skills develop after
infancy—disregards the developmental foundations of experience in motor coordination, and in the expression of vital states
as emotions for regulation of social life. In an animal’s perceived
world, its “Umwelt” (von Uexküll, 1957), conceptions of objects
are created by the intentional subject’s attempts to locate and perceive “sign stimuli” detected in the environment by dedicated
receptors (Buchanan, 2008; Berthoz and Christen, 2009). Selfregulation of knowing, with emotional assessments of risks and
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Trevarthen and Delafield-Butt
Disordered intentional movement and affects
benefits, becomes in humans the source of cultural sign systems of
social cooperation—for sustaining health, for reproduction and
for learning how to use environmental resources collaboratively
(Sebeok, 1990; Trevarthen, 1990; Stern, 2010; Porges and Furman,
2011).
We relate autistic disturbance of cognitive functions to growth
errors in creative agency attributable to events in brain development of embryo, fetus and infant (Trevarthen et al., 1998, 2006;
Trevarthen, 2000; Trevarthen and Daniel, 2005; St. Clair et al.,
2007). We address development of the autopoetic subcortical neurobiology that makes possible manifestations of intentions and
emotions before birth (Delafield-Butt and Trevarthen, 2013), and
the cooperation of movements after birth within an intimate
infant-parent intentional system (Sander, 2008), which sustains
itself by the primary emotional processes of consciousness (Solms
and Panksepp, 2012). The motivation of the developing human
organism is environment expectant, ready for sharing agency and
emotions in movement, but this sharing is “anoetic”; that is, not
dependent on acquired categorical knowledge of the structure
and uses of the environment (Vandekerckhove and Panksepp,
2011). The infant is adapted physically and motivated psychologically to receive not only vital care in attachment to the mother,
but also “companionship” for the young mind’s growing purposes in imaginative movement and the uptake of new experience
(Trevarthen, 2005, 2013). Shared health and meaning are created
in human awareness by primary processes of joint agency and
emotional sympathy between the movements of human bodies
(Trevarthen, 1986b, 2012; Reddy, 2008; Stuart, 2010).
We need to have a clear conception of the nature of animal
movement and its affective sociability if we wish to understand
how children with autism fail to organize and time their movements effectively, hesitate to become affectively engaged with their
parents as infants (Muratori and Maestro, 2007), and fall behind
their peers in learning how to share and use knowledge of the
human world playfully (Reddy et al., 2002).
Based on evidence of early neural growth errors in core brainstem systems during fetal ontogenesis, and on new evidence of
disturbance of primary prospective motor control of expressive
action, we present the following hypothesis on the etiology of
autism for testing and argument:
(1) A primary cause of autism spectrum disorders is an error in
early growth of intrinsic motive and motor systems of the
brainstem during prenatal ontogenesis.
(2) This interferes with efficient integration of sensory information with motor timing, and is accompanied by disturbance
of autonomic functions, disrupting timing and control of
prospective sensory perception in movement as well as vital
regulation of functions within the body. All these disorders
become most obvious in early childhood, when a toddler
normally gains many new powers of movement in engagement with the environment, including speech.
(3) Social isolation, socio-emotional and cognitive delay, and
language disorder in children and adults with autism are secondary consequences developed within socio-emotional systems as experience-dependent compensations for primary
sensori-motor and affective integration errors and poorly
Frontiers in Integrative Neuroscience
regulated motor intentions. These compensations are elaborated mainly by cortical systems that grow after birth.
AUTISM IS A DISORDER OF SELF-RELATED MOTOR-AFFECTIVE
PROCESSES, WHICH CONTROL DEVELOPMENT OF SHARED COGNITIVE
REPRESENTATIONS
People diagnosed as autistic exhibit disabilities in regulation of
the order and timing of moving, in the feelings of their bodies and emotional control, in selective expectation of objects
for experience, in attention to other persons expressions, in
the playfulness and humor of their social engagements, and in
collaborative learning (Baron-Cohen et al., 2000; Reddy et al.,
2002, 2010; Rogers and Williams, 2006; Mundy et al., 2009;
Hobson and Hobson, 2011; Torres, 2013). cognitive disabilities attributed to failure in special modular mental functions of
perceptual selection, of conceptual grouping, or of a capacity
to conceive and think about the emotions behind other persons” face expressions, orientations and practical actions, or to
imagine the representational contents of their minds (BaronCohen et al., 1985; Frith, 1989/2003; Morton, 2004), may only
be identified after infancy. Similarly, definition of autistic disturbance by reference to neuropsychological tests that identify
faults in praxis, gnosis, reasoning and language in adults after
local brain injury ignores the large transformations in brain
function and behavior that take place during psychological development (Karmiloff-Smith, 2009; Thomas and Karmiloff-Smith,
2002; Karmiloff-Smith, 2009).
We propose that faults in higher mind functions of persons with autism arise out of disorder in the early development
of primary, non-reflective sensori-motor factors that regulate
moving-with-awareness of an integrated Self. These affect vitality dynamics, the qualities of motor control that express essential
expectancies of action and enable communication of emotion
in purposes (Stern, 2010; Gowen, 2012; Gowen and Hamilton,
2013; Rochat et al., 2013). The primary processes of mental
agency do not require conceptual representation or explicit reference to external events; they are primary conscious experience
(Vandekerckhove and Panksepp, 2011). Growth errors found in
formation of brain stem motor control and emotional systems of
the embryo and fetus (Prechtl, 2001; Rodier and Arndt, 2005),
interfere with the maturation of sensory-motor skills at significant periods in a child’s early life, impairing cultural learning
mediated in postnatal elaborations of the neocortex and dependent on creative emotional engagement with human company
(Trevarthen et al., 2006). Interpreting autism in these terms
requires attention to the environment–expectant processes of
morphogenesis by which human bodies and brains are formed in
utero, with special adaptations for intersubjective communication
(Trevarthen, 2001a,b), and information on how additional brain
networks grow and learn after birth (Thomas and KarmiloffSmith, 2002). This is a “developmental psychobiology,” not a
“developmental cognitive neuroscience” based on the neuropsychological definition of disorders inferred retrospectively from
effects of damage to parts of the adult brain (Baron-Cohen et al.,
2000). Psychological theory must also explain how individuals
with high-functioning autism and Asperger’s disorder perform
certain feats of perception or action with remarkable precision,
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Trevarthen and Delafield-Butt
Disordered intentional movement and affects
but with inadequate awareness of the context, or “weak central
coherence,” in their self-related conceptions and plans for action
(Frith, 1989/2003; Rinehart et al., 2001).
No single genetic, neurobiological or environmental factor
has been identified as the cause of autism, which is also not
attributable to the loss of a single cerebral function or capacity (Bauman and Kemper, 2005; Aitken, 2010). The complex
and varied cognitive problems of people with autism, and the
abnormalities in habits of action and of social response or use
of language, are consequences of core disabilities, manifestations
of which might be recognized, and compensated for, in infancy,
before the development at the end of the first year of “joint
attention” (Trevarthen, 2000).
A new scientific recognition of these core disabilities in autism,
and their relationship to imagination for action and to qualities of
movement, is emerging from attention to the emotions that evaluate other persons actions (Hobson, 1993, 2002/04; Reddy et al.,
2002, 2010; Reddy, 2008; Hobson and Hobson, 2011), and from
a brain science of intentions in movement and the intersubjective sharing of their dynamics of expression (Gallese, 2006; Stern,
2010; Gowen, 2012; Gallese and Rochat, 2013; Rochat et al., 2013).
AUTISM COMPROMISES AFFECTIVE SHARING, AND REQUIRES
CREATIVE RESPONSE TO THIS
When Leo Kanner (Kanner, 1943) distinguished “autistic disturbances of affective contact” in 1943, he accentuated that the
disorder is emotional. Hobson and Hobson (2011) quote examples from Kanner’s sensitive case studies that identify a difficulty
in engagement with other person’s intentions, experiences and
feelings. Kanner also recorded that parents of these children were
often concerned from the first year about their child’s detachment or aloneness. Reddy (2008, 2011) cites a large number of
studies that prove normally developing infants “know minds”
and learn complex cooperative activities by deliberately engaging
playfully and inquisitively with the way other persons display their
interests, experiences and feelings. This eagerness for enjoyment
of shared experience, a sympathetic activity, which goes beyond
“joint attention to objects,” is weakened in autism.
The cognitive deficiencies of autism measured by tests of perceptual recognition, rational choice, and language are skills that
must be gained by learned accommodation to objective experience, and normally depend on deliberate adult instruction. But all
can be attributed to deep subjective causes that impair imaginative moving, the pleasures of the body in explorative action, and
a motivation to deliberately share this “seeking” in inventive and
playful, assimilatory, communication, going “beyond the information given” (Bruner, 1974). It appears likely that autism results
from disorders of imaginative and sociable playfulness itself, for
which the motives and emotions are apparent from birth. Such
disorders can be traced back to creative developments of movement and awareness in body and mind before birth (Trevarthen
and Delafield-Butt, 2013), to disorders of sensory-motor circular
reactions that become the tools for mastery of engagement with
the world (Piaget, 1951, 1954) and for the development of shared
cultural understanding (Baldwin, 1902).
Though some medical treatments lead to improvements in
associated conditions, there is no drug or surgical intervention for
Frontiers in Integrative Neuroscience
autism. A prescribed course of training or instruction in behaviors, cognitive abilities or communication by learned symbolic
language may help, but can have adverse consequences, increasing
the subject’s anxiety, isolation and dependency (Trevarthen et al.,
1998). Moreover, the activity, cognitive capacities, relationships
and emotional well-being of a child or older person with autism
can be improved by a variety of non-verbal, non-cognitive activities in which a therapist, who engages sensitively with the individuality of their impulses and felt experiences, accompanies the
autistic person in the emotions of intimate engagement to more
productive and less defensive states of activity and awareness. This
type of relational and creative “art” therapy, which responds to
and guides the primary actions, interests and feelings of individuals with autism, much as mother engages her affections with
her animated infant from birth, can benefit language learning
and both social and practical education (Malloch and Trevarthen,
2009; Stern, 2010).
Evidence that autistic behaviors express abnormalities of prenatal development of the brain stem (Rodier and Arndt, 2005)
relate to evidence that early postnatal communication, if it is
to support social and cognitive development, must be ready to
protect the infant against autonomic reactions of protective withdrawal and depression, as well as to support positive initiatives
promoting advances in social communication (Panksepp and
Sahley, 1987; Panksepp and Watt, 2011; Porges, 2011; Porges and
Furman, 2011). Infant psychology and paediatric practice have
been transformed by abundant confirmation that precise coordination of well-formed intentions, interests and feeling may occur
within the child and between the child and an attentive and affectionate adult from the neonate stage (Brazelton and Nugent, 1995;
Trevarthen, 1977, 1998, 2009a; Stern, 2000; Sander, 2008; Nagy,
2011). This is the arena in which we must be alert for weaknesses
in developing human sense and for special support it may need
from the parental and social environment (Narvaez et al., 2013).
PSYCHOBIOLOGY OF HUMAN MENTAL FUNCTIONS
DEVELOPMENTAL NEUROBIOLOGY OF SELF-CONSCIOUS INTENTIONS
WITH EMBODIED FEELINGS, AND SOCIAL AWARENESS
Evidence concerning the generation of animate intentions, awareness and emotion in deep processes of the brain (Panksepp
and Biven, 2012) questions the “thalamo-cortico-centric” theory of conscious awareness, thought and memory, which focuses
on abilities that depend on learned definition of objects from
information picked up outside the body, on the routines of fine
articulate skills for using the environment, and on educated conventions of representation and reflective thought about objective
information. Functional brain research shows that the primate
neocortex is excited to regulate motor activities prospectively in
reference to their goals, seeking perceptual confirmation by imaginatively simulating the completion of the action within an established context of multimodal information (Fogassi et al., 2005;
Pezzulo et al., 2008; Pezzulo and Castelfranchi, 2009; Hesslow,
2012; Gallese and Rochat, 2013). The process of intending to act
in a particular way is not a consequence of backward coupling of
frontal cortex “executive functioning” to recollections of the past
objects and events mediated impersonally in the temporal lobe.
It is the product of a forward-looking creative imagination that
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Trevarthen and Delafield-Butt
Disordered intentional movement and affects
builds an episodic memory of past events related to an intentional
personal self (Tulving, 2002), with an autopoetic imagination
equipped from the start with “implicit experiential and procedural memory processes that generate non-reflective qualia”
(Vandekerckhove and Panksepp, 2011, p. 7).
These animating functions of the primate brain mediate intersubjective coordination of self-related experiences in intimate
direct communication of purposes and feelings with others. The
anticipations of experience are charged with emotional values
linked in the brain stem with autonomic regulation of vitality
within the body (Damasio, 2010; Solms and Panksepp, 2012),
and these affections are communicated between subjects by a
reciprocal sympathetic cooperation of purposes and experiences
(not a one way imitation or shadowing of emotional processes
now commonly called “empathy”). Human relationships and
mutual awareness depend on relational emotions that promote
social cooperation in performance of creative actions and thinking, to increase collective well-being (Stern, 1993; Hobson, 1993,
2002/04; Trevarthen, 2009a).
The well-coordinated performances and expressions of affect
of newborn infants in expectant orientation to real or imagined objects, and to persons (Trevarthen, 1984, 1986b; Nagy,
2011), the development of intentional movements and rhythmic
emotional expressions of fetuses (Trevarthen and Delafield-Butt,
2013), and the behaviors of anencephalic children (Merker, 2007)
support phylogenetic evidence that primary conscious states and
emotional evaluations, which are essential regulations in all goal
directed consciousness, are indeed first generated and regulated
sub-cortically (Solms and Panksepp, 2012), without neocortical
involvement. These motor-emotional systems are elaborated in
the orbito-frontal cortex and the temporal lobe of human beings,
which continue to develop to adult stages (Schore, 1994, 2005).
Before these developments they play a central role in maternal
care, and in the repair of emotional disorders (Schore, 2003).
Affective self-regulation and emotional communication to regulate engagement with other individuals have evolved in vertebrates by elaboration of intrinsic neurochemical systems in the
brain stem linked to the hypothalamus (Trevarthen et al., 2006).
Regulation by the vagal nerve of essential self-related vital processes of heart activity, respiration and feeding is adapted for
intersubjective coordination in the primate social brain by means
of communication employing expressive movements of eyes, face,
and vocalization. Throughout development of a child, from the
time of maternal support of the infant through birth and nursing,
there is a dynamic process that balances changes in self-regulation
against the need for collaborative regulations of relationships with
other persons in various degrees of intimacy (Porges and Furman,
2011; Carter and Porges, 2013). These have particular significance
for identifying and explaining autism (Patriquin et al., 2013).
The importance of rhythmic emotionally expressive hand gestures in human communication from infancy (Trevarthen, 1986b;
Trevarthen et al., 2011), indicates that forebrain systems for guiding action of the hands in complex manipulations have been
recruited into the brain stem and limbic systems for assisting
autonomic regulations by self-touching or holding and further
adapted to the service of social coordination. Hands are part
of the human emotional motor system (Holstege et al., 1996).
Frontiers in Integrative Neuroscience
Indeed, movements of “mimesis” for social celebration in dance
and song, appears likely to have preceded evolution of speech
and contributed to its power to communicate thoughts as Homo
sapiens sapiens evolved (Donald, 2001; McNeill, 2005; Mithen,
2009; Gillespie-Lynch et al., 2013). The roots of this human talent for expressive gestural mimicry is apparent in infancy and an
essential contributor to the intimacy of parental care (Trevarthen,
1999, 2013; Dissanayake, 2000).
Both gestural and linguistic languages develop in intense
interpersonal communication mediated by vitality dynamics and
expressions of emotional investment that provide a basis for
the transmission of more differentiated semantic references by
symbols (Stern, 2010; Lüdtke, 2012). Dynamic communications
carried by consistent innate measures of moving in time (Pöppel
and Wittmann, 1999), over intervals from fractions of a second
to minutes and longer, are cultivated in all human societies in
the arts of music, dance and theatre. They begin as a universal
human regulation of rhythms of the mind or “biochronology,”
active before birth and elaborated in the communicative musicality and rhythmic action games parents play with infants in the
middle of the first year (Trevarthen, 1999, 2009b; Malloch and
Trevarthen, 2009).
Autistic children show abnormalities in production and reception of communication by both speech and gesture, and in writing
(Rapin and Allen, 1983).
THE NEUROLOGY OF COMMUNICATION BY TRANSFER OF THE
DYNAMICS AND FORM OF INTENTIONS AND FEELINGS IN MOVEMENT
New data from social neuroscience confirm the “common sense”
that we are aware of other person’s states of mind by immediate or
direct engagement with the Other’s motor intentions, by whatever
modality or movement these intentions are expressed, matching
them by instantaneous “affect attunement” (Stern, 1993, 2010) to
the animation by which we generate intentions of our own Self
(Gallese, 2006; Bråten, 2009). Sensitivity for the intentions, interests and feelings of other individuals, for the social affordances
of their behaviors, must depend upon matching regulatory processes that govern the rhythm or pulse and expressive tonality
or quality of movements of the human body as well as by “mirroring” their body-related form (Trevarthen, 1986b, 1999; Stern,
2010).
Regions in the adult cerebral hemispheres of a monkey or
human being that are sensitive to organism-object relations, and
that respond selectively to perceived capacities for action of the
self, also respond to the possible actions available to, and enacted
by others (Gallese, 2007). The same neural system is responsible for perceiving one’s own possibilities for action and the
possibilities for action of another. Direct intra-personal neural
resonance within the “mirror neuron system,” reflecting the Self,
gives one individual direct inter-personal access in “felt immediacy” (Bråten, 2009) with intentions in the mind of an Other
made manifest in their body movement, in “intersubjectivity”
(Trevarthen, 1979, 1998; Trevarthen and Aitken, 2001). Further,
data from imaging of brain activities show there exists substantial overlap in activity of this system for awareness of actions
with activity excited by merely thinking about an intentional act
(Decety and Grezes, 2006).
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Disordered intentional movement and affects
Direct resonance between preparation, execution, observation
and thought in action depends on “motor images” (Bernstein,
1967), which underpin perception, observation, and planning
of goal-directed action, and also integrate Self-related experience (Llinàs, 2001; Northoff and Panksepp, 2008). An amodal
perception-action system is also the means by which complex
embodied human intentions may be communicated between
agents across many channels of expression, in a “consensuality,” which, when further elaborated and mediated by language,
becomes a tool for sharing abstract concepts and plans (Maturana
et al., 1995).
Disruption of the neural systems of motor planning in time
and space, by epigenetic dysregulation of early development in
the brain stem, or by environmental insult to the growing brain,
will have pervasive effects in maturation of consciousness, behavior and social engagement, such as occurs in autism (Aitken and
Trevarthen, 1997; Trevarthen et al., 1998; Trevarthen, 2000).
PRENATAL GENESIS OF AUTISM
We have described the coordinative mechanisms in the brain as an
“intrinsic motive formation” (IMF), “ready at birth to share emotion with caregivers for regulation of the child’s cortical development, upon which cultural cognition and learning depend.
. . . many psychological disorders of childhood can be traced to
faults in early stages of brain development when core motive
systems form.” (Trevarthen and Aitken, 1994, p. 597). The IMF,
laid out in development of the fetus, is a core component of all
of the sensory-motor mechanism of human communication—by
gesture and dance, speech and song, or by writing, playing musical instruments and other manual or digital media (Trevarthen,
2001a,b). Rodier and Arndt (2005) relate autistic behaviors that
limit expressive movements of the eyes, face and vocal productions, and anticipatory attention to expressive movements of
other persons, to malformation in the embryo of core regulatory
systems in the midbrain, the brain stem visceral efferent and afferent nuclei, and the olivary nuclei and cerebellum. They conclude,
“there is no region but the brain stem for which so many lines
of evidence indicate a role in autism” (Rodier and Arndt, 2005,
p. 146).
IMAGINATIVE INTENTIONS AND EMOTIONS OF THE PRIMARY SELF
There has been, in the last two decades, a highly significant reevaluation of the relationship between emotion and cognition,
and their functional inseparability in human experience and in
communication at all stages of development (Damasio, 2010;
Panksepp and Biven, 2012). Comparative studies of the mammalian emotional system demonstrates that an affective core sense
of the Self (Northoff and Panksepp, 2008; Solms and Panksepp,
2012) does not depend on learned conceptual knowing. This
“anoetic” consciousness of a live body (Vandekerckhove and
Panksepp, 2011) develops before a child becomes familiar with
the external world through practice of intention and testing of
actions which explore the affordances of situations and objects.
At all stages of the development of human conscious intelligence
this mobile self-with-feelings remains active, generating an innate
spatio-temporal context for the arousal of movements to engage
with the environment, and affective values for sustaining core
Frontiers in Integrative Neuroscience
vitality (Stern, 2010). From mid gestation through infancy the
developing self is sensitive to other persons’ responses to its activities and vitality, first showing signs of vital state to achieve shared
“amphoteronomic” regulation of its own autonomics with those
of the mother. After birth the infant signals its own rhythmically
intended and affectively measured acts in responsive ways that
lead to the “synrhythmic” communication for cooperative learning and cultural development (Maturana et al., 1995; Donald,
2001; Trevarthen et al., 2006; Malloch and Trevarthen, 2009;
Porges and Furman, 2011).
DEVELOPMENT OF HUMAN AGENCY IN INFANCY, AND
BEFORE BIRTH
MEASURES OF INFANT SENSORY-MOTOR INTELLIGENCE,
SELF-REGULATION AND SOCIABILITY
Movements of a baby under 2 months old are coordinated and
integrated within a rhythmic awareness of a single intentional
subjectivity (Trevarthen, 1979, 1984). These movements were
described by Prechtl (2001) and Einspieler and Prechtl (2005)
as “general movements” (GM), which, “involve the whole body
in a variable sequence of arm, leg, neck, and trunk movements.
They wax and wane in intensity, force and speed, and they have a
gradual beginning and end. Rotations along the axis of the limbs
and slight changes in the direction of movements make them
fluent and elegant and create the impression of complexity and
variability. If the nervous system is impaired, GMs loose their
complex and variable character and become monotonous and
poor.” (Einspieler and Prechtl, 2005, p. 61). General movements
are not precisely focused, intentional and directed by discrimination of discrete objects, but they can orient head, eyes and limbs
to external events in coordinated sequences within a body-related
space (Trevarthen, 1984). Visually directed reaching in newborns
compensates for changes in the “load” of a limb, which proves
the responsiveness of this non-reflex imaginative coordination
to proprioceptive reafference, or “body self awareness” (Van der
Meer et al., 1996).
A newborn infant’s movements are especially sensitive to sight,
hearing and touch of an attentive the mother in face-to-face
engagement, and they can take a creative part in a shared narrative of expressive action (Trevarthen and Delafield-Butt, 2013).
Her voice was learned in utero (DeCasper and Fifer, 1980) and its
sound motivates rapid visual learning of her face. Imitation tests,
made with care to allow the infant to focus attention and regulate
a state of responsive arousal, prove that a newborn can initiate
eye-movements, face expressions, vocal sound patterns and hand
gestures of another person (Meltzoff and Moore, 1977; Maratos,
1982; Field et al., 1983; Heimann et al., 1989; Kugiumutzakis,
1999; Nagy and Molnar, 2004; Nagy, 2011). These behaviors
signaling a “second person other-awareness” are adapted for sharing curiosity for others’ mental states of interest and affective
appraisal (Reddy, 2011).
At 2 months, after a period of rapid maturation of sub-cortical
and cortical visual-motor regulations of foveal sight (Trevarthen,
1986a), the infant’s precisely timed responses of looking, smiling,
and vocalization give evidence of preparation for sharing ritual
practices and language (Bateson, 1979). Electroencephalic data
on the activity of a 9-week-old infant’s brain when looking at
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the photograph of a woman’s face (Tzourio-Mazoyer et al., 2002)
confirmed that complementary neocortical areas in left and right
brain, which 2 years later will become involved in a child’s learning of expression and reception of spoken language, are already
components in cerebral regulation of interpersonal contact by a
“social brain,” long before the training of a “social intelligence”
by life with other persons (Frith and Frith, 1999). The subcortical visual and auditory systems that mature from the early fetal
period show an asymmetry related to differences in left and right
parts of the brain stem that mediate in complementary autonomic
regulations (Trevarthen, 1996). Schore (1994, 2005) proposes that
the early developing right brain motivates shared learning of perception and articulation of meaning in language when the left
cerebral hemisphere shows an acceleration of growth in the second and third year, the period when diagnosis of autism becomes
possible.
Developments around 3–5 months correlate with more differentiated movements of the baby’s extremities when new neocortical sensory-motor functions are developing. Einspieler and
Prechtl, label these subtle gestures “fidgety,” and describe them
as, “small movements of moderate speed with variable acceleration of neck, trunk, and limbs in all directions” (Einspieler and
Prechtl, 2005, p. 61). They lead the infant to make more discriminating orientations of head, eyes and hands intending to
reach for and touch or take hold of objects at a distance from
the body, and are accompanied by a fall in attention to the
mother. This incites the mother to be more animated and playful, and to incorporate the baby’s selective interest in objects into
“person-person-object” games (Hubley and Trevarthen, 1979;
Reddy, 2011).
PROGRAMMED DEVELOPMENT OF THE INFANT-PARENT SYSTEM
Longitudinal studies of developments in actions, perception and
communication in the first two years, with information on internally regulated brain growth changes, confirm that there are
transformations in the motives and emotions of the child for
collaboration with parental care (Trevarthen and Aitken, 2003).
Sander’s studies of infants with their mothers from birth over
the first 36 months showed that growth of a human life is sustained by a series of stages of adjustment within a system of
human-to-human engagement (Sander, 2008). Both mother and
child are significant actors, but in the creative process of development the child must normally set the pace and the times of
important advance. Brazelton extended Sander’s system approach
to an interpersonal paediatrics accepting the conscious and personal powers of the newborn, and defining “touch points” in the
developing life with parents and in the community (Brazelton
and Nugent, 1995; Brazelton and Sparrow, 2006). Periods of
change in developing powers that are both sensitive and significant, are symptoms of advances in motivation for learning and for
communication (Johnson, 2005). Their consequences depend on
collaboration with parents who are “attuned” to the infant (Stern,
2000), and both intimate and playful in their accommodation to
the child’s impulses.
Data from a review of the literature on changes in the child’s
psychology and brain over the first 18 months (Trevarthen and
Aitken, 2003) point to natural emergence in the child of new levels
Frontiers in Integrative Neuroscience
of mastery of action and awareness at around 6 weeks, 4 months,
7 months, 9 months, and between 15 and 18 months. These
agree with longitudinal studies of infant’s capacity to take initiative in joint activities (Trevarthen, 1977; Hubley and Trevarthen,
1979; Reddy, 2011). These five advances in adaptive processes
correlate with temperamental changes commonly referred to as
“regressions.” They adapt to cultural differences in the frequency
of parental initiatives or directives (Reddy et al., 2012). They
are products of the active system of “intent participation” in
the environment with companions that drive cultural learning
(Trevarthen, 2013).
SENSORI-MOTOR INTENTIONALITY BEFORE BIRTH: GENESIS OF
PRIMARY SELF-CONSCIOUSNESS AND THE FIRST INTERSUBJECTIVITY
Spontaneous movements develop in the late embryo and
fetus, showing increased sensory awareness of their purposes
(Delafield-Butt and Trevarthen, 2013). The first integrative
actions of the nervous system are to move the body, and the
first nerve tracts in the central nervous system are those that
will activate movements to express different orientations and
emotional states (Trevarthen, 1986a). After 8 weeks the core neurochemical systems of the subcortical brain that will link motor
centers and select and evaluate experiences throughout life make
their appearance. At this stage the fetus makes the general movements of Prechtl (2001). These become increasingly differentiated
and controlled with the benefit of re-afference from sensory
systems that grow in the following weeks. Detailed studies of
by real-time ultrasonography demonstrate a fetus’s exploratory
sensation-testing to touch their own body, their face, the placenta, umbilicus, and the uterine wall with their hands at 11
weeks. They make jaw movements and swallow amniotic fluid,
expressing pleasure or disapproval at tastes, sucking and smiling
or grimacing with disgust. Complex movements of trunk, arms,
and legs position the body, and may react to movements of the
mother’s body and to the contractions of the muscles of her uterus
(Lecanuet et al., 1995; Trevarthen et al., 2006; Piontelli, 2010).
In weeks 10–14 fetal movements become differentiated into individual, isolate actions with increasing goal-direction to particular
parts of the body (Prechtl, 2001; Piontelli, 2010). The arms and
hands “test” sensitive zones of the body, especially to the face and
head, exploring the border of sensory innervation on the top of
the head (Piontelli, 2010, p. 61–67).
In singleton pregnancies motor planning of action patterns
adapted for different goals is evident before 22 weeks gestational
age (Zoia et al., 2007). In twin pregnancies, movements directed
by one twin to the other are “carefully” slowed, even by 18
weeks, which the researchers interpret as evidence of a primary
“social awareness” (Castiello et al., 2010). At this time the motor
centers of the brain stem and spinal cord are directing the coordinated behavior of the fetus (Okado, 1980). Neocotical cells do
not develop dendrites until after 26 weeks of gestation (Hevner,
2000).
This natural history of human movement at a stage of development when the sensori-motor environment can only be the properties of an organized body itself appears to support Lashley’s conclusion that propositional thought may depend on, and indeed be
derived from, the spontaneous syntactic ordering of movement
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sequences (Lashley, 1951, p. 122). The fetus has an imaginative
“motor intelligence” and can formulate orderly projects without
neocortical skills.
Expressions in fetuses, in addition to twisting movements
of distress and tentative exploration by touch, give evidence
of emotions—of discomfort, curiosity or pleasure, adapted for
communication of interests and feelings. In the third trimester,
movements of the face visualized by 4D ultrasound develop into
complexes that define a “cry face gestalt” or a “laughter gestalt,”
expressing emotions that will communicate powerfully immediately after birth in the regulation of parental care (Reissland et al.,
2011). Maternal hunger with depletion of energy supply to the
fetus drives “anxious” patterns of fetal movement. The mother
and the fetus are already affectively connected. These discoveries
prompt a revolution in psychological theory and medical ethics.
There is a consensus in modern paediatrics that by 24 weeks the
fetus should be considered a conscious agent deserving the same
standard of sympathetic medical care as adults (Royal College of
Obstetricians and Gynaecologists, 2010).
READINESS FOR SUPPORT OF THE BODY IN RHYTHMS OF MOVEMENT,
AWARE OF SURROUNDINGS, AND ATTENTIVE TO HUMAN COMPANY
IN MOVEMENT
Infants demonstrate the regulations of an innate time for life in
movement. Research on their dynamics and coordination with a
parent’s movements have led to a natural science of human “musicality” (Trehub, 1990; Papoušek, 1996; Malloch, 1999; Malloch
and Trevarthen, 2009). Inspired by discoveries of precise analysis of films, revealing self-synchrony of movements of individual actors and inter-synchrony between actors in conversations
(Birdwhistell, 1970; Jaffe and Felstein, 1970; Condon and Ogston,
1971) researchers found that infants and adults share matching
rhythms (Condon and Sander, 1974; Beebe et al., 1985; Jaffe et al.,
2001). One remarkable video recording made by Saskia van Rees
of a 2 month premature infant in precisely timed coordination
of dialogue of simple “coo” sounds vividly demonstrates how this
shared sense of time for combining syllables in phrases may lead
to a narrative in wordless dialogue (Trevarthen, 1999).
Two bands of time are shown to be fundamental in dialogues, games and songs between young infants and their parents
(Trevarthen, 1999, 2009b). Faster rhythms of syllables and phrases
in speech and song, or dancing steps and gestures, correspond
with arm and hand grasping for object manipulation, or of the
head and eye rotations that perform visual inspection. These
range from the median syllable frequency of 1.5–3 per second—
the same as a running or fast stepping, a glance or eyebrow rise, a
laugh or a hand wave—to every 3–5 s for a visual scan, a manipulative sequence, a phrase of speaking or song, and a cycle of deep
breathing. These are somato-motor coordinations that achieve
use of the environment and pickup of information for perception,
or of a communicative message, in the “psychological present,”
the “here and now” of consciousness in action.
Slower periods of sensed vitality, as expressed in the “extended
present” of an episode in a story, a verse of singing or a stanza
of poetry, occupy 10–25 s. Longer times of imagined activity
and narrations form natural elements of 25–50 s in the rhythmic verses, playful or calming, of baby songs in all languages.
Frontiers in Integrative Neuroscience
These slower events are identified with autonomic events that
regulate arousal, hunger and wakefulness throughout life, and
regulation of the rate of heartbeat and breathing by the vagal
nerve (Delamont et al., 1999). They are accompanied by bursts
of electrical activity in the cerebral cortex that have a role in
the fluctuating experiences of dreaming. They link the imagination with the economy of life energy in the body, and with the
expressive arts.
Stern (1993, 2000, 2010) called the cycles of arousal or variations in vitality dynamics in mother infant play “emotional narratives” expressing “implicit relational knowing.” Malloch analysed
the controlled patterns of change in voice qualities and pitch of
the voices of mothers and infants in dialogues and baby songs as
“narratives” that, “allow two persons to share a sense of passing
time, and to create and share the emotional envelopes that evolve
through this shared time. They express innate motives for sharing emotion and experience with other persons and for creating
meaning in joint activity.” (Malloch, 1999, p. 45). These shared
“routines” are identified by Bruner (1999) as the medium for reference in language. We have recently been finding evidence of the
same “narrative” cycles of arousal in the “general movements” of
newborn infants, which may be shared with a sensitive mother
who coordinates with her baby by modulated vocal sounds,
touches or rocking. They participate in tides of consciousness of
being together that later will regulate the changes of meaning in a
story or the recollections of episodic memory (Delafield-Butt and
Trevarthen, 2013; Trevarthen and Delafield-Butt, 2013).
SENSORI-MOTOR DIS-COORDINATION IN AUTISM, FROM
INFANCY
DEFICIT IN PROSPECTIVE MOTOR CONTROL IN AUTISM AND ITS
CONSEQUENCES FOR DEVELOPING INTENTIONALITY AND LEARNING
The complex disorder of childhood autism, and how it has serious
effects on a young child’s life, may be described as follows:
“By about one to two years after birth . . . at a time when infants
usually become acutely aware of other people and what they are
doing, full of playful imagination and eager for new experiences,
these babies became strangely self-contained or isolated in their
own world and increasingly unresponsive or irritable, and difficult to understand; their vocalizations movements often seemed
repetitious and pointless, and their gestures and postures were also
odd. Throughout their childhood they continued to express themselves in ways that made parents, teachers and other children feel
unable to make contact.
As pre-schoolers, the children are not insensitive to others or
unaffectionate, and they can show strong likes and dislikes for
particular people. Sometimes they imitate or seek to interact, but
never in a free and easy way, and sometimes with a peculiar ritualistic insistence, and remarkable inattention to their effects on
other people. Strange postures and movements and a need for
sameness, combined with obsessive interest in certain objects and
experiences, cut them off from others. At times they seem to be
in a trance, “floating off,” “looking” or “listening” when nothing
is there, often with strange flapping of the hands, or an enigmatic
smile, and they only make unintelligible baby-like vocalizations.
They may get into inexplicable panics and seem very distressed,
anxious or terrified, especially when forced to have close contact with people or in strange environments. In general they do
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not like, or fear, unfamiliar places or routines. They protest at
irregularities in their world and repeat seemingly trivial actions
for their own interest. Some, in panicky states or anger, may injure
themselves. Most of the time, however, they seem content to amuse
themselves, often performing favorite actions over and over. Their
behaviors can be frightening and distressing to parents who need
help to understand what is wrong and how to cope with a child
who looks healthy enough, but who won’t respond.”
(Trevarthen et al., 1998, p. 1–2).
Odd behaviors like these are seen in children who do not have
autism, but they are momentary and easily regulated by the child’s
playful resourcefulness or by affectionate attentions of parents,
and in shared enjoyment with other children. The autistic child
has persistent problems in both self-regulated actions and emotions, and in awareness of other person’s intentions, interests
and feelings. There are conflicting ideas on the causes of these
problems and how to respond, especially for the early stages.
Disorders of movement in children with autism particularly
affect expressive movements in communication (Ricks and Wing,
1975; Damasio and Maurer, 1978; Gillberg and Coleman, 1992;
Frith and Frith, 1999; Oller et al., 2010). These have lead to an
interpretation in terms of a deficit in “executive functioning”
(Rumsey, 1985) attributed to a developmental fault in the frontal
lobes that manifests itself in the second year. Recent data point to
a more basic and probably earlier developing deficit in prospective
control of movements (Mari et al., 2003; Rinehart et al., 2006a;
Dowd et al., 2012; Gowen and Hamilton, 2013). For example,
in an automated vocal analysis of a large body of data recorded
from natural expressive behavior of infants 10–50 months of age,
Oller et al. (2010) identified massive delay in development of
movements of vocal articulation in children developing autism or
language delay. Such disorders affecting communication behavior
can be explained as originating as faults in the timing and integration capacities of the brainstem sensorimotor system, which
develops prenatally and affords prospective control for later developments in psychological functions. Failure in cognitive strategies
of “action planning” and “action execution” (e.g., Rinehart et al.,
2001; Nazarali et al., 2009) attributable to change in mirror neuron systems (e.g., Cattaneo et al., 2007; Fabbri-Destro et al.,
2009), require higher-order cortical processing, which develops
after birth.
Children with ASD differ from typically developing children in
the efficiency of three types of prospective motor control:
(i) Generation of single actions, such as when extending the
hand to touch, or indicate, an object of interest;
(ii) Organization of a series of actions to perform more complex
tasks or projects, including speaking, and
(iii) Simultaneous coordination of multiple action units to achieve
coherent purpose, as in postural accommodations when
standing or walking.
Simple “action units” and serially organized “action chains” both
require precise coordination of muscle actions that are conceived
or imagined “ahead-in-time” so that they achieve a desired future
effect efficiently (Bernstein, 1967; von Hofsten, 1993; Lee, 2009).
Frontiers in Integrative Neuroscience
And an integrative control of movement is a necessary foundation for learning more advanced and complex tasks, such as
speaking and reading (von Hofsten, 2004, 2007). Awareness of
others’ intentions requires detecting prospective control in their
movements, and this is apparent in how infants participate in
dialog and games (Trevarthen, 1986b). Failure to time movements prospectively and meet expectation in movement will
thwart efficient goal acquisition, confuse awareness and frustrate
a sense of success, causing negative emotions of self-protection
and avoidance (Bower et al., 1970; Rovee-Collier et al., 1978).
(i) Evidence for disturbance in prospective control of single action
units.
Autistic persons exhibit significant differences in the timing and patterning of single movements (Rinehart et al., 2001,
2006a; Mari et al., 2003; Nazarali et al., 2009; Dowd et al., 2012).
The type of disturbance varies with the task and the sub-group
examined. For example, in a reach-to-grasp task individuals with
ASD grouped by low or average to high intellectual ability, with
full-scale I.Q. scores below and above 80, exhibited different
kinematics, and both groups acted significantly less efficiently
than typically developing children (Mari et al., 2003). Differences
between ASD groups were thought to reflect different compensatory coping strategies for a primary deficit in motor planning.
The autistic individuals also failed to coordinate the two subactions in the reach-to-grasp task, i.e., reaching of the arm and
the opening of the fingers. They performed one act and then
the other separately. Typical children coordinate the sequence of
arm and hand actions in “pre-reaching” and gesturing fluently
from early infancy (Trevarthen, 1984; Rönnqvist and von Hofsten,
1994; Prechtl, 2001).
(ii) Evidence for disturbance in serial organization of multiple
action units.
The progressive planning of “action chains” communicate
intentions. When we see someone grasping a bottle, for example,
the initial reaching movement of the arm differs depending on
whether the goal is to shelve it or to serve some wine (Jeannerod,
1999). The postural preparation of the body and extension of
the arm, with shifts of gaze, are adjusted from the start in different ways depending on the final goal. Children with ASD have
deficits in this preparatory coordination for motor sequencing or
action chaining (Cattaneo et al., 2007; Fabbri-Destro et al., 2009).
Typically developing children, when asked to perform an object
manipulation task, such as turning an upside-down drinking glass
right-side up, adjust their body posture at the start of the action so
that their final posture is comfortable (Rosenbaum et al., 1990).
Children with autism begin with a comfortable posture and conclude it in an uncomfortable one, suggesting a deficit of motor
“knowledge” of how the action will proceed.
Cattaneo and colleagues (2007) used electromyographic
recordings of the mylohyoid muscle movements that lower the
jaw and raise the tongue for reaching-to-grasp-to-eat, and they
compared this sequence with the muscle activity during a movement of reaching-to-grasp-to-place. They found that typicallydeveloping children anticipated eating the food with mylohyoid
activation beginning well before their hand had grasped the piece
of food. In contrast, this activation did not start in children with
ASD until the food was already grasped in the hand and traveling
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toward their mouth, demonstrating a failure to couple the action
chains efficiently. This lack of anticipation was also evident when
the children were asked to watch another person perform the
reach-to-grasp-to-eat action. The mylohyoid activation occurred
in typically-developing children at the onset of the other’s movement toward the food, but in autistic individuals there was no
mylohyoid activation at all.
(iii) Evidence for failure in simultaneous integration of multiple
action units.
Measurements of children’s postural adjustments and muscle
tensions during load shifting shows that prospective control of
whole-body posture and perception of body-space goals, which
require synchronizing and co-ordinating action units throughout the body in shifts of the legs, chest, back, and arms, are
also disrupted in autism (Schmitz et al., 2003). Disturbances of
prospective control for the whole body are confirmed by data on
gait differences in individuals with autism, showing an increase
stride length and variability of the width of stride, but also significant differences in postural adjustments of the upper-body
to maintain balance (Hallett et al., 1993; Vernazza-Martin et al.,
2005; Rinehart et al., 2006b; Calhoun et al., 2011; Nayate et al.,
2011). They also have difficulties in perceiving the environmental
context for their movements (Gowen and Hamilton, 2013).
DIFFERENCES IN PROSPECTIVE MOTOR TIMING AFFECT SOCIAL
EXPECTATION AND UNDERSTANDING
The subtle deficits in prospective motor control of children
with ASD must be involved in the symptoms of social isolation and emotional distress that they show. They have difficulties in communicating their intention in gestural acts, and in
sensing the dynamics of another’s intentions from their movements (Cattaneo et al., 2007; Zalla et al., 2010; Gowen, 2012).
Imitation-based or interaction therapies for ASD employing sensitive response to signs of intended movement are able to assist
because they facilitate both anticipation of actions and psychological and emotional connection (Escalona et al., 2002; Nadel,
2006; Zeedyk, 2008; Field et al., 2011; Solomon et al., 2012). The
therapist acts to excite anticipation, which simplifies and supports
the performance of desired actions. It also explains why insistence
on evidence from repeated measures of performance in tasks to
test perceptual preferences or cognitive mastery can fail to detect
or explain the cause of failure (Wigram and Gold, 2012). Such
external measures, focusing on achievement of goals or response
to facts, neglect the temporo-spatial phenomena of prospective
motor control within the subject.
Problems of intentionality and its perceptual guidance in
autism, and pathological defense against sensory overload
(Rosenhall et al., 1999; Foxton et al., 2003), may be due to faults
in motor regulations of sense organs; of the inner ear to adjust
the sensitivity of hearing, and of head and eye movements to
control selection of detail by foveal fixation which is guided by
pick-up of global information from the ambient field. Hearing
and production of speech sounds, which autism impairs in differing degrees, is particularly demanding, requiring detection and
control of affective expression transmitted by small modulations
in the timbre, pitch and loudness of vowel sounds, and their constraint by consonants produced in rapid sequences to articulate
Frontiers in Integrative Neuroscience
intelligible words in information-rich phrases. Autism, however,
interferes not only with the motor controls of selective hearing
and seeing, but with attention to all the expressive movements of
other persons.
In high functioning persons with autism, exceptional abilities
in detecting, separating and combining visual details or pitches
of sounds (O’Riordan et al., 2001; Bonnel et al., 2003; Mottron
et al., 2006) may be a consequence of compensatory hypertrophy in higher cortical sensory systems driven by a bias to detect
affective self-related feedback or support. Ockleford’s experience
with supporting exceptional performative talents in autistic children who cannot speak suggest that pleasure from control of pitch
in sounds from musical instruments activates a primary reward
system different from that which discriminates speech components (Ockleford, 2012, 2013). In confrontation with another, a
person with autism avoids looking at the eyes, directing attention to the mouth (Senju and Johnson, 2009). Given that rapid
movements of the eyes transmit important information about
the direction and intensity of interest, in preparation for shifts
in locomotion, posture or reaching by hand, as well as selective attention to individuals in a group, they implicate tracking
of sequences of intended action to engage with others’ prospective control in thought and action (Bal et al., 2010). Lower face
expressions and mouth movements express affect and are essential for emotional sympathy. They attract attention of an observer
for judging another person’s feelings.
Failure to appreciate playful teasing and humor and avoidant
or defensive reaction to strangers, as well as preference for familiar surroundings and consistency in placement of objects or
execution of routines, characteristics of ASD, all point to a disturbance of imaginative curiosity for prospects of action. They are
as much disorders of self-regulation of pleasurable movementwith-awareness as of affective other-awareness, and they impair
intentional and emotional engagement (Hobson and Hobson,
2011; Reddy, 2011)
DISORDERS OF AUTISM IN THE FIRST YEAR
Teitelbaum and colleagues (1998, 2002), studying home movies
of infants later diagnosed as autistic, made a comparative analysis of the developmental stages of turning over, crawling, sitting,
standing and walking, which infants typically master in the first
year. Using the Eshkol-Wachman Movement Notation for temporal and spatial parameters of human body movement they
showed deficits in whole body control and sequencing of the
movements of trunk, head and limbs to control balance and
posture changes, which were interpreted as disordered sensorymotor reflexes. These detailed observations have been helpful
for parents who suspect their infant may be developing autism,
assisting them to engage the attention of medical specialists and
therapists (Teitelbaum and Teitelbaum, 2008)
Similar disturbance of anticipatory regulations of whole body
postures were found by Danon-Boileau (2007) in films made of
two sisters while they were being bathed by their mother; one,
at five months, who later developed autism, and the other who
developed normally, at 3 months. The films show the anxiety and
awkwardness of the first girl who scarcely looked at her mother,
and an analysis of the mother’s speech shows she was not “in
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contact” and was using her voice with a detached tone, to draw
response. With the normally developing sister the mother’s speech
is lively and addressed to the child as person seeking to share the
experience. This infant keeps eye contact with the mother and
reacts expressively. Similar observations were made in an analysis of home movies of identical twin girls at 10 months, when
their father was helping them to walk or playing a game with them
in the family living room (Trevarthen and Daniel, 2005; St. Clair
et al., 2007). One girl later diagnosed as autistic, and who did not
speak until the age of 3, showed clear delay in motor coordination for stepping and for regulation of her sitting posture. She
lacked attention to other persons’ eyes and made fleeting smiles
and she could not participate in a teasing game with her father
that required anticipation of his rhythmically phrased behaviors
and speech. The rhythms and expressions in response to teasing
and tickling with the father were different from those of the typically developing twin, and the father was unable to reciprocate,
creating confusion in games and interactions. Her sister who had
a mild retardation at school age, developed normally through the
first years showing no evidence of autism.
The lack of responsive attention by the infant developing
autism to her father’s attempts to play caused him to become
irregular and insistent in his solicitations, which afterwards he
could see only confused the child. The same transformation of
parents’ responses to avoidant or disengaged behavior of an infant
developing autism have been noted in other studies of home
movies and in prospective studies of siblings of autistic children,
i.e., a change to a more insistent and monotonous mode that tries
to excite a response (Baranek, 1999; Saint-Georges et al., 2010,
2011). For example, there is a lack of the affective modulation
of the parent’s voice in speech to an infant who later develops
autism (Mahdhaoui et al., 2011). Disorder in development of the
child’s vocal control on the way to mastery of speech, such as
that demonstrated by Oller et al. (2010) for the crucial period
from 1–4 years, will affect the parents ability to share talking, and
prompt them to use stimulating or coercive ways of engaging with
the child.
Two research strategies have been used to search for evidence
of abnormal development before medical diagnosis is possible: prospective study of the infant siblings of older children
with autism. The two procedures confirm important conclusions about manifestations of autistic disorder that are developing in the first 18 months after birth (Zwaigenbaum et al.,
2005; Saint-Georges et al., 2010). They highlight effects of the
“flatness” and lack of seeking for engagement and also changes
associated with the phases of motor development which were
recorded by Teitelbaum (Teitelbaum et al., 1998, 2002), and
the development of interest in objects. Attention to objects was
normal in the first six months in infants developing autism
when their attention to social engagement was significantly low
(Maestro et al., 2002). There is a specific loss of interest in other
persons” expressions early in infancy (Muratori and Maestro,
2007).
Expression of intentions and affects is achieved with crossmodal fluency between voice and gesture that promotes sympathetic action and shared experience with “affect attunement”
(Trevarthen, 1986b, 2009a; Tronick, 1989; Stern, 2000; Reddy,
2008). Expressive acts, like all goal-directed voluntary movement,
Frontiers in Integrative Neuroscience
require prospective control, and by assimilation of the form and
flow of the movements of the body and voice of one subject
states of intention, affect, arousal and interest are conveyed to the
awareness of the other in “felt immediacy” (Bråten, 2009; Stern,
2010; Trevarthen et al., 2011). If predictive control of the timing
and harmonization of these expressive body movements are disrupted, then psycho-motor attunement with the perceptual and
motor experiences of others will be confused.
Magnetic resonance imaging of the brains of autistic children
indicate reduction in size of the brainstem and midbrain at birth,
a loss of tissue more than compensated for by excessive growth
of the brain as a whole postnatally (Hashimoto et al., 1995).
Detailed neuroanatomical investigation of brains from children
with ASD also indicate limbic midbrain structures and brainstem regions are affected (Rodier and Arndt, 2005). Of particular
note is an abnormality in the inferior olivary nucleus, a prominent lower brainstem nucleus known to be involved in perceiving
and controlling of the timing of movement (Welsh et al., 1995),
indicating a likely primary site of disruption underpinning ASD
motor deficit (Welsh et al., 2005).
The data on motor impairments in ASD and their early manifestation in infancy confirm a primary deficit in the capacity to
perceive and move the body in a planned way, which limits the
capacity to control the timing of actions of the body and their
perceptual consequences, and thence impairs the communication
of intentions and ideas.
AN INTERACTIVE RELATIONAL APPROACH TO THERAPY
AND TEACHING, NURTURING INTIMACY AND CREATIVEY
OF MOVEMENT
“Musical structure in improvisation can provide a framework for
creative development, and . . . more creative skills may well-emerge
given a structure than one might see from a purely free form of
improvisation—where a lack of direction and model may leave the
“non-musician” client struggling to find out how they can “create”
music.... Creativity is a key process in improvisational music therapy, and demands substantial skill and flexibility in the therapists
to nurture in clients for therapeutic benefit.”
(Wigram, 2006).
Interactive music therapy for both diagnosis and treatment of
autism indicates that the aim of a therapist or teacher is to provide
support for creativity, and that this requires both a “direction and
model” and “skill and flexibility.” It requires a guide that protects
the learner from “struggling to find out how they can create.” And
it requires descriptive evidence from single case studies (Wigram
and Gold, 2012). In the controversial field of therapy for children with autism there is a bewildering range of theories and
advice for procedures, which range from strict teaching of skills
to control disordered actions and feelings and to coax communication, to permissive environments where possible distractions
are eliminated and attempts are made to give comfort (Trevarthen
et al., 1998; Teitelbaum and Teitelbaum, 2008). Given the evidence
that the core deficit in autism concerns prospective sensori-motor
control and affective self-regulation, especially for activities of
communication, we focus our final comments on evidence that
intimate or intensive engagement with the impulses of affected
children in ways that bring pleasure from control of actions and
www.frontiersin.org
July 2013 | Volume 7 | Article 49 | 10
Trevarthen and Delafield-Butt
Disordered intentional movement and affects
mutual recognition may bring benefit for creative learning of
practical skills and artificial rituals of shared experience, including
language.
Finely measured pulse, form and flow of the enactments of
the sensuous body and voice convey psychological states of intention, affect, arousal, and interest (Trevarthen, 1986a,b; Stern,
2010; Trevarthen et al., 2011; Hardy and Blythe LaGasse, 2013).
Gestures made in communication are controlled and directed in
body-space and by selecting transitory goals with precise timing
of muscular energies that display affective content in “narrative”
sequences (Schögler et al., 2008; Trevarthen and Delafield-Butt,
2013). It follows that, if the common control of body movements is disrupted, then the individual will have difficulty finding
psycho-motor attunement with the perceptual and motor experiences of typical others.
Understanding of the fundamental and deeply felt disorder
in autism as failure of integrative brain activity for carrying
out sensori-motor intentions with ease and creativity, that it is
a disorder that also affects communicative expression and perceiving the motor intentions of others, may help explain how
intensive, imitation-based therapies attentive to emotions may be
effective and may foster enjoyable response and interest (Nind,
1999; Field et al., 2002, 2011; Nadel, 2006; Nordoff and Robbins,
2007; Zeedyk, 2008; Caldwell, 2010; Frank and Trevarthen, 2012;
Lüdtke, 2012; Solomon et al., 2012). By consciously “attuning” to
the motor acts of the autistic patient and feeling their affective and
intentional content in “intense interaction,” before re-enacting
creative collaborations with adaptation to responses, the therapist
provides an exterior pattern of actions that are timed and directed
sensitively to compensate for repetition of uncertain, anxious
attempts (Hardy and Blythe LaGasse, 2013). A responsive, “listening” makes communication possible, as well as progress to
new self-confident and joyful experience, which may free an
exceptional talent (Ockleford, 2013).
Sensorimotor attunement in therapy embodies mental/affective components as much as it does the motor expression,
and in so doing is able to open up a co-regulation of arousals,
interests, and intentions in a person otherwise unavailable and
isolated. All movements are considered valid expressions of purposeful states, and even stereotypies are regarded as affective
sensori-motor acts capable of initiating communication, not
disregarded an unintentional, non-mental motor acts. As the
therapist attends to the movements of the person, attuning to
them with her own body movements, so they begin to generate an implicit, affective, and inter-subjective psycho-motor
connection. Such therapy can aid not only the autistic child
to achieve communication, but can be of great help to a parent. It may bring an autistic person of any age and to more
self-confident and articulate participation in an intimate community of knowledge (Frank and Trevarthen, 2012; Lüdtke,
2012).
It is the experience of any therapist who works with persons
suffering from autism that a conscious care must be taken to
“stand back” and allow any impulse the child or adult may show to
take its course, indeed shadowing or mirroring it to aid its motivation. This is the principle put into the practice of interactive
music therapy (Robarts, 1998; Wigram and Gold, 2006; Nordoff
and Robbins, 2007; Wigram and Elefant, 2009; Ockleford, 2013).
A more explicit standing back, called “asocial,” is practiced by the
method developed by the paediatric neurologist Waldon to assist
persons with a wide range of disabilities in acting and thinking.
The therapist places him or herself behind the client, holding the
arms to guide the hands in performance of tasks to move objects
in such a way that a goal or project is completed bringing a sense
of satisfaction. This method has proved effective in helping young
children overcome the confusion and isolation of autism in a way
that makes productive and progressive motor learning possible
(Solomon et al., 2012).
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Conflict of Interest Statement: The
authors declare that the research
was conducted in the absence of any
commercial or financial relationships
that could be construed as a potential
conflict of interest.
Received: 28 March 2013; paper pending published: 08 May 2013; accepted:
14 June 2013; published online: 17 July
2013.
Citation: Trevarthen C and DelafieldButt JT (2013) Autism as a developmental disorder in intentional movement and affective engagement. Front.
Integr. Neurosci. 7:49. doi: 10.3389/fnint.
2013.00049
Copyright © 2013 Trevarthen and
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July 2013 | Volume 7 | Article 49 | 16
RESEARCH ARTICLE
Pilot Study: Efficacy of Sensory Integration Therapy for
Japanese Children with High-Functioning Autism
Spectrum Disorder
Ryoichiro Iwanaga*†, Sumihisa Honda, Hideyuki Nakane, Koji Tanaka, Haruka Toeda
& Goro Tanaka
Division of Physical and Occupational Therapy, Department of Health Sciences, Nagasaki University Graduate School of Biomedical
Sciences, Nagasaki, Japan
Abstract
This study's objective was to investigate the efficacy of sensory integration therapy (SIT) for children with
high-functioning autism spectrum disorder (HFASD). The subjects were 20 HFASD children with IQs above 70 selected
from previously collected data. Eight participated in individual SIT sessions, and 12 participated in group therapy (GT)
including social skill training, communication training, kinetic activities, and child–parent play for 8–10 months.
Changes in Total score and five Index scores on the Japanese version of the Miller Assessment for Preschoolers before
and after therapy between children in the SIT and GT groups were compared. The results showed that Total score and all
Index scores except for Verbal Index increased significantly in the SIT group, while only Total score increased in the GT
group. Furthermore, the SIT group showed more improvement compared with the GT group in Total score and on
Coordination, Non-verbal, and Complex Index scores. SIT might have a more positive effect on motor coordination
abilities, non-verbal cognitive abilities, and combined abilities of sensory motor and cognition in children with HFASD
when compared with GT. This study has limitations such as being an analysis of previously collected data. Further study
should be conducted with a randomized control trial. Copyright © 2013 John Wiley & Sons, Ltd.
Received 10 October 2012; Revised 21 June 2013; Accepted 26 June 2013
Keywords
autism spectrum disorder; sensory integrative therapy; paediatric occupational therapy
*Correspondence
Ryoichiro Iwanaga, Division of Physical and Occupational Therapy, Department of Health Sciences, Nagasaki University Graduate School of
Biomedical Sciences, 1-7-1 Sakamoto, Nagasaki 852-8520, Japan.
†
Email: [email protected]
Published online in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/oti.1357
Introduction
Sensory integration (SI) theory was originally developed
by A. Jean Ayres to focus on the neurological processing
of sensory information (Ayres, 1972). Sensory integrative
therapy (SIT) or SI approach has been used for the
treatment of challenged children since the 1970s. Many
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
studies have demonstrated the effectiveness of the SIT
approach for challenged children (Grimwood and
Rutherford, 1980; Ottenbacker, 1982; Ziviani et al.,
1982; Polatajko et al., 1991; Allen and Donald, 1995;
Case-smith and Bryan, 1999; Linderman and Stewart,
1999; Candler, 2003; Miller et al., 2007a, 2007b;
May-Benson and Koomar, 2010).
Iwanaga et al.
Sensory Integration Therapy for ASD
Sensory integrative therapy has also been applied to
children with autism spectrum disorders (ASD). An
Internet survey questioning treatments used for children
with ASD revealed that SI was the third most commonly
reported intervention (Green et al., 2006). Some
researchers have investigated the efficacy of SI treatment
for children with ASD. For example, Miller et al. (2007a)
indicated that children with ASD undergoing occupational
therapy using the SI approach (OT-SI) made significant
gains compared with an Activity Protocol group and a no
treatment group on goal attainment scaling, the Attention
subset, and the Cognitive/Social composite of the Leiter
International Performance Scale—Revised. The OT-SI
group improvement trends on the Short Sensory Profile,
Child Behavior Checklist, and electrodermal reactivity were
in the hypothesized direction. Additionally, Fazlioğlu and
Baran (2008) reported that statistically significant differences in the Sensory Evaluation Form for Children with
Autism scores between SIT groups and control groups
indicated that SIT programmes positively affected children
with autism. Pfeiffer et al. (2011) identified significant
positive changes in children with ASD in a SIT group when
compared with a fine motor treatment group and a significant decrease in autistic mannerisms in the SIT group.
Additional studies of children with ASD or pervasive developmental disorder have provided preliminary support for
SIT in areas such as reducing self-stimulating behaviours
and increasing functional behaviours such as social interaction and play (Case-Smith and Bryan, 1999; Linderman
and Stewart, 1999; Smith et al., 2005; Watling and Dietz,
2007). However, some studies have not affirmed the
effectiveness of SIT compared with other therapy forms.
A review study (Baranek, 2002) suggested that outcomes
of SIT for children with autism in psychoeducational and
motor categories are stronger than in other areas, at least
for SI studies compared with no treatment conditions;
however, effects appeared to be equal when compared with
alternative treatments. Devlin et al. (2011) reported that
behavioural intervention was more effective than SIT in
the treatment of challenging behaviour of children with
ASD. Section On Complementary And Integrative Medicine; Council on Children with Disabilities; American
Academy of Pediatrics cautioned that parents should be
informed that the amount of research regarding the effectiveness of SIT is limited and inconclusive (Section On
Complementary And Integrative Medicine; Council on
Children with Disabilities; American Academy of Pediatrics
et al., 2012). Thus, although SIT has been adopted for
children with ASD, its effectiveness is controversial.
Many studies demonstrated that improvements in
sensory-motor skills, motor planning, and readingrelated skills in children with learning disabilities, with
mental retardation, or with developmental coordination disorder (DCD) were seen using SIT or SI
treatment (Grimwood and Rutherford, 1980;
Humphries et al., 1990; Wilson and Kaplan, 1994;
Allen and Donald, 1995; Leemrijse et al., 2000; Wuang
et al., 2009). However, there were no studies investigating
the effectiveness of SIT for cognition, motor performance,
or motor planning in children with ASD except for a
single case report (Schaaf et al., 2012). Hence, an examination of the effectiveness of SIT for not only behaviour
but also cognition, verbal, motor, or praxis abilities in
children with ASD is warranted.
In order to clarify the effectiveness of SIT on
cognition, verbal, motor, and praxis abilities on children with ASD, a comprehensive test tool is needed.
The Japanese version of the Miller Assessment for
Preschoolers (JMAP) (Tsuchida et al., 1989) is a
standardized test that assesses cognitive abilities, verbal
abilities, and sensory-motor abilities. Therefore, we
expect the JMAP would be able to detect changes in
the cognitive, verbal, and sensory-motor abilities in
children before and after therapy. To examine the
effectiveness of SIT, we compared score changes on
the JMAP for individual SIT to common group therapy
(GT) treatment methods by analyzing previously
collected data from children with HFASD.
Thus, the purpose of this study was to examine the
effectiveness of SIT on cognition, verbal, and sensorymotor abilities in children with ASD.
Method
Subjects
Subjects who satisfied the following conditions were
selected from Nagasaki Prefectural Medical Treatment and Education Center's clinical records and a
clinic of Nagasaki University clinical records by the
first author while serving there from 1995–2011
(Table I).
(1) The subject was diagnosed with autistic disorder,
Asperger's disorder, or pervasive developmental
disorder not otherwise specified by paediatricians
according to DSM-IV (APA, 1994).
(2) The subject had an IQ above 70 using the Tanaka–
Binet test.
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
Iwanaga et al.
Sensory Integration Therapy for ASD
Table I. Descriptive statistics for participants and period of therapy
Group
Number
Male : female
IQ
Autism : Asperger
Age in months at start of
therapy
Therapy duration (months)
Individual sensory
integration
Group
therapy
p
8
8:0
100.7 ± 9.6
3:5
56.8 ± 9.0
12
10:2
94.8 ± 9.1
6:6
56.3 ± 6.8
ns
ns
ns
ns
9.3 ± 1.0
9.3 ± 0.9
ns
(3) The subjects had participated in individual SIT or
GT for durations of between 8 to 10 months.
(4) The subject took the JMAP examination and completed data both before therapy and after therapy.
(5) Age at first and second testing was within the
target age of JMAP, which was between 2 years
and 9 months, and 6 years and 2 months.
(6) Parents gave informed consent to use data for this
study during the first visit.
The basic programme at Nagasaki Prefectural
Medical Treatment and Education Center was GT.
However, some children could not participate in these
groups because the groups were full. The first author
conducted SIT in this institution to the children who
could not enter GT. Some children were chosen from
the clinic at Nagasaki University. These children were
given SIT by the first author in a SIT room at Nagasaki
University. Most of the subjects in both institutions were
introduced by public health nurses or kindergarten
teachers in order to provide possible therapies and to
get advice for children's behaviour or communication
problems. Therefore, the parents of this study's subjects
did not choose institution and therapy style.
Therapy for children with autism spectrum
disorder
Subjects were given either SIT (1 h) or GT (1.5 h) weekly.
SIT was conducted by the first author individually. The
first author is a SI therapist certified by the Japanese
Sensory Integration Association. During SIT, the first
author, also an occupational therapist, and a child
interacted in a therapy room equipped with sensory
and kinetic equipment such as a swing, ball pit, balance
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
beam, ladder, and trampoline. The child interacted with
the sensory and kinetic materials in an active, meaningful,
and fun manner. Recently, the Ayres Sensory Integration
Fidelity Measure (ASIFM) (Parham et al., 2011) was proposed with the following parameters: 1) Ensures physical
safety; 2) Presents sensory opportunities; 3) Helps the
child to attain and maintain appropriate levels of
alertness; 4) Challenges postural, ocular, oral, or bilateral
motor control; 5) Challenges praxis and organization of
behaviour; 6) Collaborates in activity choice; 7) Tailors
activity to present just-right challenges; 8) Ensures that
activities are successful; 9) Supports a child's intrinsic
motivation to play, and 10) Establishes a therapeutic
alliance. However, the SIT used in this study was not
formally examined by the ASIFM because it had not yet
been established. Instead, the first author incorporated
the principles of SI (Ayres, 1979; Koomar and Bundy,
1991). For example, the therapist established a safe
environment both physically and emotionally, provided
praise, feedback, and instruction, made challenges on
postural, ocular, and bilateral motor controls, and made
appropriative challenges on praxis and organization.
The activities were individually planned to present justright challenges and to tap the client's inner drive, chosen
with regard to be client's interest and opinion, consistently modified to succeed and to engage, and designed
to offer opportunities for enhanced sensory intake of
tactile, vestibular, and proprioceptive information.
The GT programme included social skill training,
communication training, kinetic activities, and child–
parent play. In this therapy, an occupational therapist,
a speech therapist, and three nursery school teachers
interacted with five to six challenged children. Because
the contents of GT were not adapted to each child, GT
only fulfilled parameters “1. Ensures physical safety”
and “2. Presents sensory opportunities” in ASIFM.
Instrument
Subjects were assessed using the JMAP (Tsuchida et al.,
1989), a re-standardized version of the Miller Assessment
for Preschoolers (MAP) for use with Japanese children.
The JMAP is composed of the following five major developmental indices: 1) Foundation Index; 2) Coordination
Index; 3) Verbal Index; 4) Non-verbal Index; and 5)
Complex Index. Items in the Foundation Index evaluate
the child's sense of spatial position and movement, sense
of touch, and development of the basic components of
movement. The Coordination Index includes items that
Sensory Integration Therapy for ASD
evaluate gross, fine, and oral motor abilities. The Verbal
Index includes items that examine memory, sequencing,
comprehension, association, and expression in a verbal
context. The Non-verbal Index includes items that test
memory, sequencing, visualization, and the performance
of mental manipulations not requiring spoken language.
The Complex Task Index includes items that measure
the combined abilities of sensory motor and cognition
(Miller, 1988). Total and Index scores are expressed
using percentile scores.
Procedure
The first author, who has been trained to administer
and interpret the JMAP, administered the JMAP to all
of the subjects individually before and after therapy.
Data were excluded for children who could not follow
or comprehend the instructions for the JMAP, or
whose score was noticeably affected by his inattention,
impulsiveness, hyperactivity, or inability to understand
the instructions.
Data analysis
The Kolmogorov–Smirnov test indicated that JMAP's
Total score and several Index scores for both groups
at first examination were not normally distributed.
Therefore, we used nonparametric statistics. First,
before and after therapy, JMAP data were compared
for each group using the Wilcoxon signed-rank test.
Next, changes in Total score and each Index score
before and after therapy were compared between the
SIT group and GT group using Mann–Whitney test.
Results
Subject selection
The Japanese version of the Miller Assessment for
Preschoolers data were available from a total of 243
children. Of these children, 84 did not have autistic
disorder or Asperger's disorder and were excluded
from the present analyses. Of the remaining 159, 29
were excluded for having IQ scores less than 70. From
the 130 children left, 78 were excluded for having been
tested only once. From the remaining 52, 28 were
excluded for having a test–retest period shorter than
8 months or longer than 10 months. Thus, data from
the remaining 24 children fulfilled the conditions
outlined in the Method section. However, test reports
Iwanaga et al.
described that several item scores in four cases were
lacking in reliability because these subjects had
problems in attention or hyperactivity. Therefore, these
children were excluded, and the data from the
remaining 20 subjects were analyzed in this study. In
these subjects, 8 children received individual SIT and
12 children received GT. Seventeen of the subjects
who met the inclusion criteria were treated in Nagasaki
Prefectural Medical Treatment and Education Center.
Twelve children of them received GT and five received
SIT. Three children who received SIT were treated in
the clinic at Nagasaki University. All individuals who
worked with the children (e.g., public health nurses
or kindergarten teachers) and all parents had no
knowledge of SIT before the first visit. All of the
subjects belonged to regular kindergartens or nursery
schools, and none of the subjects were medicated.
Additionally, no subject had previously received any
other type of therapy.
Japanese version of the Miller Assessment
for Preschoolers Index score changes
before and after therapy within
each group
Figure 1 presents mean scores and standard deviations
for the SIT group before and after therapy on Total and
Index scores on the JMAP. There were significant gains
from before to after therapy for Total score (mean
gain ± SD = 34.38 ± 21.98) (W = 36, p = 0.012), Foundation Index score (mean gain ± SD = 34.13 ± 34.21)
(W = 26.5, p = 0.035), Coordination Index score (mean
gain ± SD = 46.75 ± 36.26) (W = 361, p = 0.012), Nonverbal Index score (mean gain ± SD = 45 ± 24.26)
(W = 28, p = 0.018), and Complex Index score (mean
gain ± SD = 30.75 ± 20.73) (W = 28, p = 0.018). However,
Verbal Index score showcased no significant changes
(mean gain ± SD = 13 ± 44.26) (W = 24, p = 0.401).
Figure 2 shows mean scores and standard deviations for
the GT group before and after therapy on Total and Index
scores. While Total score showed a significant gain from
before to after therapy (mean gain ± SD = 8.25 ± 11.69)
(W = 43, p = 0.015), Foundation Index score (mean
gain ± SD = 11.33 ± 25.54) (W = 13, p = 0.138), Coordination Index score (mean gain ± SD = 8.92 ± 17.87)
(W = 30.5, p = 0.08), Verbal Index score (mean gain ±
SD = 14.67 ± 31.2) (W = 45, p = 0.075), Non-verbal Index
score (mean gain ± SD = 8.25 ± 36.6) (W = 49, p = 0.433),
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
Iwanaga et al.
Sensory Integration Therapy for ASD
Figure 1 Mean scores and standard deviations for the sensory integration therapy group before and after therapy on Total and Index scores
on the Japanese version of the Miller Assessment for Preschoolers
Figure 2 Mean scores and standard deviations for the group therapy group before and after therapy on Total and Index scores on the
Japanese version of the Miller Assessment for Preschoolers
and Complex Index score (mean gain ± SD = 3.83 ± 31.2)
(W = 40.5, p = 0.505) showed no significant changes.
Differences in score changes for Total
score and each Index score before and
after therapy between groups
By using the Mann–Whitney test, significant differences
in score changes from before and after therapy between
the two groups were found for the Total score (U = 84,
p = 0.005), Coordination Index score (U = 82, p = 0.008),
Non-verbal Index score (U = 79, p = 0.016), and Complex
Index score (U = 75.5, p = 0.034) with the greater differences occurring in the SIT group compared with the GT
group. There were no differences between the two groups
for Foundation Index score (U = 69.5, p = 0.086) or
Verbal Index score (U = 48.5, p = 0.969).
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
Discussion
The purpose of the present study was to clarify the
effectiveness of SIT for children with HFASD.
Although the present study did not employ a planned
controlled trial, the efficacy of SIT and GT for HFASD
was compared by examining differences in JMAP data
changes before and after therapy in children with
HFASD who had either received SIT or GT by
analyzing previously collected data from children with
HFASD retrospectively.
In the GT group, Total score was significantly
improved from before to after GT; however, there were
no significant changes in Index scores. Changes in item
scores could not inflate Index scores to a significant
level, whereas Total score might change significantly
because all item score changes were combined in the
Total score. Although the possibility that maturation
Sensory Integration Therapy for ASD
or other factors that may produce changes in JMAP
scores cannot be ruled out, GT might have little positive affect on abilities that were examined by JMAP.
In the SIT group, Total score and all Index scores
except for Verbal Index score significantly increased after
SIT. The results in score changes from before to after
therapy indicated that SIT might improve fundamental
sensory-motor abilities, coordination abilities, nonverbal cognitive abilities, and visual-motor abilities.
Comparison of score changes between the SIT group
and the GT group using Mann–Whitney analysis
showed differences in changes in Total score and three
Index scores between the two groups. Because the
change in the Coordination Index score was greater
in the SIT group than the GT group, the efficacy of
SIT for motor coordination abilities in children with
HFASD was suggested. The present findings of
improved motor coordination with SIT agree with the
results of previous studies conducted on children with
learning disabilities and mild mental retardation
(Humphries et al., 1990; Wilson and Kaplan, 1994;
Wuang et al., 2009). The Complex Task Index score
was also improved in the SIT group compared with
the GT group. Therefore, SIT was suggested to be effective on a combination of motor and cognitive abilities
in children with HFASD. The SIT in the present study
incorporated principles of SI (Ayres, 1979; Koomar and
Bundy, 1991), included activities that were individually
planned to present “just-right” challenges, was consistently modified for success and engagement, and made
appropriative challenges on praxis and postural, ocular,
oral, or bilateral motor control. These elements of SIT
might contribute to improved motor abilities and
combined abilities in motor and cognition in children
with HFASD. Although motor coordination problems
are not described in either the diagnostic criteria of
Pervasive Developmental Disorder in the DSM-IV
(APA, 1994) or ASD in the DSM-5 (APA, 2013), most
children with ASD have motor problems. Green et al.
(2009) reported that 79% of children with ASD had
obvious motor dysfunction. Moreover, Mostofsky
et al. (2006) suggested that children with ASD had
problems in praxis. Several studies indicated that
motor problems affect daily activities. For example,
poor motor skills are a strong risk factor for becoming
bullied (Bejerot et al., 2011). Children with probable
DCD had an increased risk of mental health difficulties
in later years (Lingam et al., 2012). Motor impairment
in children with DCD was independently associated
Iwanaga et al.
with lower participation diversity (Fong et al., 2011).
Because SIT was demonstrated to be effective in motor
coordination and for the combination of motor and
cognitive abilities, it might provide a positive impact
on abilities related to daily life functions. Changes in
Non-verbal Index score from before to after therapy
were greater in the SIT group compared with the GT
group. Additionally, changes in the Complex Index
score that reflect visual-motor function were greater
in SIT than GT. Therefore, the effectiveness of SIT for
visual cognitive abilities in preschool children with
HFASD was suggested.
While three indices significantly changed, the Verbal
Index did not showcase any significant differences in
the scores from before to after SIT. In addition, there
were no differences in the scores between the SIT and
GT groups. Therefore, these results suggested that SIT
did not improve verbal abilities in children with HFASD.
Therefore, the results from the present study might indicate that skills closest to sensory-motor activities related
to SIT are more likely to show changes than verbal skills
that are further from these training elements.
Although previous work has criticized the efficacy of
SIT compared with alternative treatments (Devlin et al.,
2011; Section On Complementary And Integrative Medicine; Council on Children with Disabilities; American
Academy of Pediatrics et al., 2012), the authors did not
examine motor or praxis abilities. To date, there has been
no studies examining the efficacy of SIT on motor,
praxis, or cognitive abilities of ASD compared with no
treatment or alternative treatment using standardized
tests. Although the present study could not provide
counterevidence for previous critical studies, it demonstrated the efficacy of SIT for motor, visual cognition,
and visual-motor abilities, which had not been
previously investigated in children with ASD.
The findings of the present study should be
interpreted with a few limitations in mind. First, the
present study did not compare changes in the score
for SIT with other specific therapies. Additionally, the
sample size was small, and the present study did not
employ a randomized control trial. The number of
children in each group was different, because the
present study included a retrospective analysis of
previously collected data. Both types of therapy were
different in their therapy members. Each session length
was different (1 h in SIT and 1.5 h in GT). Although
treatments were different, there was overlap in that
GT training included kinetic activities that were similar
Occup. Ther. Int. (2013) © 2013 John Wiley & Sons, Ltd.
Iwanaga et al.
to activities provided in SIT. The same therapist
conducted SIT, but multiple staff members took
part in GT, because the data were accumulated over a
16-year span. Parents' characteristics such as socioeconomic status were also unavailable. Furthermore, the
first author did both testing and SI treatment. This
may have biased the findings. Further study should be
conducted with a randomized control trial to clarify
the differences in the effectiveness of SIT and other
forms of therapy for children with ASD.
Conclusion
The present study indicated that SIT was more effective
for motor coordination abilities, non-verbal cognitive
abilities, and the combined abilities of sensory motor
and cognition in children with HFASD when compared
with GT. Thus, occupational therapists could use SIT
as one technique for the treatment of motor, visual
cognition, and visual-motor abilities in preschool
children with HFASD.
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Autism
http://aut.sagepub.com/
A pilot randomized controlled trial of DIR/Floortime parent training intervention
for pre-school children with autistic spectrum disorders
Kingkaew Pajareya and Kaewta Nopmaneejumruslers
Autism 2011 15: 563 originally published online 13 June 2011
DOI: 10.1177/1362361310386502
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What is This?
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A pilot randomized controlled
trial of DIR/Floortime™
parent training intervention
for pre-school children with
autistic spectrum disorders
K I N G K A E W PA J A R E YA
autism © 2011
SAGE Publications
and The National
Autistic Society
Vol 15(5) 563–577; 386502
1362-3613(2011)
Faculty of Medicine, Siriraj
Hospital, Mahidol University, Bangkok,Thailand
K A E W TA N O P M A N E E J U M RU S L E R S
National Institute for Child and Family Development, Mahidol University, Bangkok,Thailand
This pilot study was designed to test the efficacy of adding
home-based Developmental, Individual-Difference, Relationship-Based
(DIR)/Floortime™ intervention to the routine care of preschool
children with autistic spectrum disorder. Measures of functional emotional development and symptom severity were taken. It was found that
after the parents added home-based DIR/Floortime™ intervention at
an average of 15.2 hours/week for three months, the intervention
group made significantly greater gains in all three measures employed
in the study: Functional Emotional Assessment Scale (FEAS) (F = 5.1,
p = .031), Childhood Autism Rating Scale (F = 2.1, p = .002), and the
Functional Emotional Questionnaires (F = 6.8, p = .006). This study
confirms the positive results obtained by a previous DIR pilot study
(Solomon et al., 2007).
A B S T R AC T
K E Y WO R D S
autistic
spectrum
disorders;
DIR/
FloortimeTM;
home-based
intervention;
parent
training
ADDRESS
Correspondence should be addressed to: K I N G K A E W PA J A R E YA ,
Department of Rehabilitation Medicine, Srisanwan Building, Faculty of Medicine, Siriraj
Hospital, Mahidol University, Bangkok,Thailand. e-mail: [email protected]
Autistic spectrum disorder (ASD) is a severe developmental disability.
Children with ASD typically are diagnosed before age 3. Once considered
to be a very rare disorder, occurring in around 3 or 4 children per 10,000,
recent epidemiological research indicates that the prevalence rate of ASD
is approximately 9.0 per 1,000 population (95% CI 8.6–9.3) (Centers for
Disease Control and Prevention, 2006).
Children with ASD have challenges at two levels. At one level, they are
compromised in the basic foundations of relating, communicating, and
Copyright © The Author(s), 2011. Reprints and permissions:
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DOI: 10.1177/1362361310386502
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563
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thinking, such as having difficulty with reciprocal social communication as
part of a relationship. At a second level, they frequently show superficial
symptoms such as repetitive behavior, self-stimulation, and self-absorption
(Richler et al., 2007; Watt et al., 2008).
Children with ASD need a lot of help in developing early skills in establishing joint attention, imitation of caregivers, communicating with gesture
and symbols, tolerating change and thinking logically.
This broad agenda has led to a broad range of approaches to early,
comprehensive and intensive intervention, with concomitant controversial
claims for their efficacy. Among the intensive therapeutic approaches, two
broad types of intervention, behavioral and social-pragmatic, are typical
(Prizant, and Wetherby, 1998).
On one end of the continuum is ABA, a behavioral approach based
primarily on teaching practices derived from tenets of learning theory and
operant conditioning (Lovaas, 1987). This approach shapes the child with
autism's behavior through an operant learning paradigm using discrete
behavioral trials to increase language and socialization and decrease repetitive behaviors. ABA usually consists of up to 40 hours per week of oneon-one intervention, involving repetitive practice of tasks where an adult
determines the focus and goals of the intervention. Lovaas published results
of a study evaluating the efficacy of this intervention in 1987, which had
a tremendous impact. It was the first study to present empirically validated
gains in children with autism. ABA became one of the dominant ways to
work with children with ASD for many years.
In the intervening years, a number of critiques have focused on problems
both with the internal and external validity of the Lovaas (1987) study (see
for example, Gresham and MacMillan, 1997; Conner, 1998; Magiati and
Howlin, 2001; Matson, 2007). The study has been criticized for the use of
different IQ tests before and following treatment, and for its reliance on IQ
as the sole psychometric measure of functioning.
Recent years have brought additional questions about the efficacy of
the ABA model. In particular problems have been reported with a child’s
ability to generalize, dependency on cues, lack of spontaneity and selfinitiated behavior, rote responding, and failure to generalize behavioral gains
across settings and responses (Matson et al., 1996; Schreibman, 1997). In
addition, more recent studies, which partially replicated the UCLA/Lovaas
Model, showed that IQ gains were substantially smaller than in Lovaas’
original study (Weiss, 1999; Harris and Handleman, 2000; Smith et al.,
2000; Cohen et al., 2006). Some studies indicated little or no adaptive
behavioral gains (Salt et al., 2002; Cohen et al., 2006; Reed et al., 2007),
and no emotional differences when compared to a control group (Smith
et al., 2000).
AU T I S M
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D I R / F L O O R T I M E ™ P A R E N T T R A I N I N G I N T E RV E N T I O N
On the other end of the autism intervention continuum are socialpragmatic approaches that are based on typical child development (see for
example, Rogers and Lewis, 1989; Greenspan and Wieder, 1997; Gutstein
and Sheely, 2002; Mahoney and Perales, 2003). The prototypical socialpragmatic approach is represented by the Developmental, IndividualDifference, Relationship-Based (DIR)/Floortime™ model of Greenspan
and Wieder (Greenspan and Wieder, 1997).
DIR focuses on relationships, social skills, meaningful, spontaneous use
of language and communication, and integrated understanding of human
development. The integrated model of human development includes interaction with caregivers and the environment, biological, motor and sensory
differences, and the child’s functional emotional developmental capacities.
In addition to the study of 200 children with ASD (Greenspan and Wieder,
1997), there have been more recent studies which have used a relationship-based approach incorporating the fundamentals of the DIR/Floortime
model. These studies demonstrate positive results for children with ASD
(Mahoney and Perales, 2003; Solomon et al., 2007). However, the biggest
challenge with the studies based on the DIR/Floortime model is the absence
of a control group.
In Thailand, all of the hospital and special education nurseries use ABA
as their main systematic treatment. Ranging from 20–40 hours per week
of intensive intervention, it represents the gold standard of treatment.
However, this approach is not feasible for almost all of the families in
Thailand as there is a national shortage of personnel trained in these
approaches. Some institutes provide additional training for parental intervention in specific skills with a range of intervention approaches involving
parents in behavior management and promotion of communication skills
which are non-intensive, utilizing teaching in everyday situations.
We focus this pilot study on testing whether adding the new DIR/
Floortime treatment would confer additional benefits over routine clinical
care available to both groups in terms of climbing ‘the developmental
ladder’ and reducing autistic symptoms.
Method
Ethics approval
The study was approved by the Institutional Ethical Committee of Mahidol
University. Written informed consent was obtained from the children’s
parents before enrollment in the study.
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Participants
Subject recruitment was conducted by paper, advertising the DIR/Floortime model shown at the National Institute for Child and Family Development, Mahidol University,Thailand. The parents who were interested in this
new treatment method could call in for registration or more information.
All of the registrations were arranged in sequence and the families were
serially called in to the office for screening and to confirm the diagnosis.
The children whose diagnoses were confirmed by a developmental pediatrician and met clinical criteria for autistic disorders according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric
Association, 1994) were invited to participate in the study, if they were 2–6
years of age. The children were excluded if a) they had any additional
medical diagnosis (e.g. genetic syndromes, diagnosed hearing impairment,
diagnosed visual impairment or seizures); b) they were geographically inaccessible for follow-up visits; or c) their parents were not literate or had
known chronic psychiatric or physical illness.
Thirty-two participants were enrolled in the study. Children were
assigned to either the typical treatment or DIR/Floortime–supplemented
treatment groups using stratified random assignment based on age and
symptom severity. Four strata were thus generated within both treatments
to guarantee baseline similarity: mild autism and age 24–47 months, mild
autism and age 48–72 months, severe autism and age 24–47 months,
severe autism and age 48–72 months. The Childhood Autism Rating Scale
(Schopler et al., 1986) was used to rate the degree of severity. Children
with scores from 30 to 40 points on the CARS scale were placed in the
mild autism category, and children with scores between 41 and 60 were
placed in the severe autism category. There were 8 children in each stratum.
AU T I S M
Intervention
The target treatment was based on the DIR/Floortime™ intervention developed by Greenspan and Wieder (Greenspan and Wieder, 1997). The first
author, who has degrees in rehabilitation medicine, had been trained in the
DIR/Floortime model from books (Greenspan and Wieder, 1998; ICDL,
2000), manuals (Greenspan and Lewis, 2005), the Floortime DVD training
series (ICDL, 2005a,2005b, 2005c), and practiced this technique as a
home consultant for two years before the study started.
The study treatment involved intervention entirely with parents of
children with ASD, rather than directly with the children themselves. Before
the first session, all parents in the intervention group attended a one-day
training workshop with the first author, to learn about the DIR/Floortime™ model. In addition, all parents received a 3-hour DVD lecture,
recorded from the workshop presented by the first author. The lecture
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consisted of the basic concept of DIR technique and the biological challenges of the children with ASD in terms of sensory reactivity, processing
of the sensory data and planning motor responses. This lecture also
included the details of Greenspan’s Six Functional Developmental Levels
(FDL) (Greenspan and Wieder, 1997): 1) self regulation and interest in the
world; 2) engagement and relating; 3) purposeful emotional interaction;
4) social problem solving; 5) creating ideas and 6) thinking logically.
At the first one-on-one visit, the parents were trained for 1.5 hours.
They were trained to observe their child’s cues, follow the child’s lead,
and implement the Floortime™ techniques that were appropriate for their
child’s current level of functional development to achieve the identified
goals.
If the child could not calm down or could not be warm and loving
their parents were encouraged to do Floortime level 1: joining their child
in an activity that gave them pleasure and maintaining mutual attention
and engagement. Floortime level 1 contributed to milestone 1 and 2.
If the child could not engage in two-way gestural communication, did
not express a lot of subtle emotions, or could not open and close many
gestural communications in a row, their parents were encouraged to do
Floortime level 2: using simple communication through animated face to
face interaction with increasing back and forth communication. This
achievement correlated with milestones 3 and 4.
If the child could not engage in pretend play and/or use words to
convey intentions or wishes, the parents were encouraged to do Floortime
level 3: helping their child to express needs, wishes and feelings through
pretend play and using their ideas in daily conversation. This achievement
correlated with milestone 5.
If the child could not connect thoughts logically and hold a conversation for a period of time, the parents were encouraged to do Floortime
level 4: helping their child become a logical and critical thinker. This
achievement correlated with milestone 6.
All of the parents were advised to help their children exhibit these
aforementioned skills through a full range of emotions.
Because children with ASD do not naturally master the milestones in
complete sequential order, some parents had to learn more than one technique to promote their child’s development.
Modeling involved the investigator showing parents how to use Floortime™ with their child. After parents observed the investigator modeling
the skills, they were asked to independently demonstrate the same skills.
Modeling skills first and then asking parents to play after having observed
the investigator was more accepted by Thai families than asking them to
play without previous modeling from the investigator. Coaching involved
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the investigator observing the parents playing with their child and giving
them feedback about their performance.
In addition, each family had a manual or ‘pocket book’ that helped
them identify activities for semi-structured problem-solving daily exercises.
These activities were designed to enhance affect-based communication
skills of the children and to improve basic neurological problems. The
manual was based on the affect-based language curriculum (ABLC)
(Greenspan and Lewis, 2005). The goals and home program were set for
each family and they were asked to carry out their Floortime™ and semistructured problem-solving activities for a minimum of 20 hours per week.
The intervention group was followed up with at the end of the first
month. The observer provided feedback to the parents about how they
related to their children. Controlling and intrusive responses were replaced
with responses aimed at facilitating two-way emotional signaling and communication between parents and their children. Modeling and coaching
were used to improve their performance. The goals, methods and techniques of the home program were refined to synchronize with the child’s
progress.
Families in the intervention group used the study intervention in addition to ongoing routine care of one-on-one treatment intervention based
on behavioral or discrete trial principles throughout the study period.
Meanwhile, the children in the control groups continued their routine
care for three months while they were waiting for the DIR/Floortime™
parent training. The baseline assessment and follow-up time schedule were
similar to those of the intervention group.
AU T I S M
Measures
Baseline demographic data included the children’s profiles and their families’
characteristics: marital status, having siblings or not, educational status of
the mother, working status of the parents and participation in a special education (or regular) preschool program.
Primary outcome measurement
The Functional Emotional Assessment Scale (FEAS) (child behaviors)
(Greenspan et al., 2001) is an observational measure that was used at the
beginning of the first session and the end of the study to measure changes
in children’s functional development. The FEAS is a valid and reliable,
age-normed, clinical rating scale that could be applied to videotaped interactions between children and their caregivers. A 15-minute videotaped
child–parent interaction was collected for each child. Each parent was asked
to play with their child as they normally would at home using a standard
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D I R / F L O O R T I M E ™ P A R E N T T R A I N I N G I N T E RV E N T I O N
set of toys (including symbolic, tactile and movement play materials). The
change of the FEAS child score was used as the primary outcome of the
overall progression.
The assessment team consisted of two developmental psychologists who
had experience in assessing children with autism and were blinded to the
children’s group status. Intra-class correlation coefficient was applied to test
the agreement between two raters. Data from 20 randomly chosen subjects
were analyzed and it was found that the correlation coefficient was 0.96.
At the follow-up period, all of the children were assessed by the same
FEAS items as the beginning of the study. The scores from two assessors
were averaged. The increment of the averaged follow-up score from the
averaged baseline score was used to determine the improvement.
Secondary outcomes measurement
The Childhood Autism Rating Scale (CARS) (Schopler et al., 1986) was used
to rate the degree of autistic symptoms on a scale of 15–60. The decrement
of the follow-up score from the baseline score was used to determine the
improvement.
Developmental rating of the children was estimated by the parent at
baseline and the end of the study using the Functional Emotional Developmental Questionnaire (FEDQ) (Greenspan and Greenspan, 2002). The questionnaire was related to Greenspan’s Six Functional Development Levels
(FDL): 1) shared attention and regulation; 2) engagement and relating; 3)
purposeful emotional interaction; 4) social problem solving; 5) creating
ideas; and 6) thinking logically. The difference between the increments
determined the clinical progression.
The original version of the FEDQ was translated into Thai by the first
author and then translated back into English by a fluent English speaker.
The Thai version was tested for its face validity by three health care professionals who had worked in the field for more than 3 years and by one
parent of a child with ASD. All of them agreed that the FEDQ had face
validity as they appeared to measure the fundamental development of the
children. They then examined each item of the questionnaire to find the
content validity. It was found that the intra-class coefficient of each item
varied from 0.75–1. The content validity of the Thai version of the FEDQ
was then accepted.
Compliance, contamination and co-intervention
At the first visit, the parents were supplied with a set of weekly logs in
order to help them estimate the average number of hours per week that
they used the home-based DIR/Floortime™ technique as well as any other
methods of interventions for their child.
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Because it was nearly impossible to control the co-intervention, the
input from other health and education services (e.g. part-time placement
in a nursery, kindergarten) were reported.
AU T I S M
Results
Baseline characteristics of the children with ASD and their families
Table 1 summarizes the demographic and pre-treatment scores of the intervention and control groups. The gender make-up is an 8:1 male to female
ratio. Ten of sixteen children (62.5%) of the control group and 13 of 16
children (81.2%) of the intervention group were diagnosed with autistic disorder. The remaining children were classified with Pervasive Developmental
Disorder, Not Otherwise Specified (PDD-NOS). The difference of these ratios
was not statistically significant (p = .430). There was no statistical difference in the other baseline parameters of either group including average age
of the children at entry, level of development and symptom severity.
In the sub-category of the overall status, the proportion of the children
who had islands of the capacity to symbolize in the intervention group
(10 of 16) seemed to be greater than the proportion in the control group
(6 of 16) but the difference was not statistically significant (chi-square
test, p = .16).
Regarding the families, parents in the intervention group tended to have
lower levels of education than the parents in the control group and the ratio
of children who had a sibling in the intervention was lower than in the
control group. However, these differences were not statistically significant
(chi-square test, p = .10).
At the beginning of the study, most of the participants in the intervention group (n = 14) and the control group (n = 14) attended either fulltime or part-time special education or a (regular) preschool program for
22.6 (SD = 15.2) and 19.5 (SD = 9.9) hours perweek accordingly. They
also received a mixture of services including one-on-one speech therapy,
occupational therapy or other treatments based on behavioral principles
with 3.1 hours per week for the intervention group and an average of 3.3
hours per week for the control group.
During the study period, 11 families in the intervention group used
home-based DIR/Floortime™ activities in addition to their routine programs, 3 families decreased their child’s time in a pre-school classroom
and 2 families stopped attending the schools in order to increase their
Floortime™ at home. During the study, the intervention group performed
the DIR/Floortime™ intervention at an average of 15.2 hours per week
(SD = 12.4).
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5
5
Associated with moderate-to-severe motor planning problem
On medication
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14
4
14
8/8
10
6
15
3/13
11
3.1 (1.8)
5
6
0
3
3
10
56.6 (10.1)
15/1
13/3
37.2 (6.2)
24.4 (12.7)
44.0 (12.9)
Intervention group
n = 16
p = .22***
p = .70***
p = .54***
p = .06***
p = .50***
p = .62*
p = .50***
p = .71***
p = .26**
p = .24*
p = .60*
p = .43*
p = .28*
p = .86*
p = .51*
Statistics
* from Student-t test; ** from chi-square for trend test; *** from chi-square test.
Note. SD = standard deviation; PDD-NOS = pervasive developmental disorder – not otherwise specified; CARS = Childhood Autism Rating Scale (Schopler et al., 1986);
FEAS = Functional Emotional Assessment Scale (Greenspan et al., 2000); FEDQ = Functional Emotional Developmental Questionnaire (Greenspan and Greenspan, 2002).
Their families
Mother has bachelor degree or higher
Mother in full- or part-time employment
Two-parent household
Sibling in family (yes/no)
11
3.3 (1.4)
0
4
6
6
Overall status
No affective engagement
Only intermittent engagement, no reciprocal communication
Intermittent reciprocal communication, no symbolization
Islands of symbolization
Participation in special education (or regular) preschool program
Average hour per week (SD) of paramedical services
(e.g. speech therapy, occupational therapy)
51.5 (13.9)
13/3
10/6
39.7 (6.6)
23.5 (12.6)
40.7 (15.3)
Control group
n = 16
Demographic and pre-treatment scores of the intervention and control groups
The children
Mean age in months (SD)
Gender (male/female)
Diagnosis (autism/PDD-NOS)
Mean CARS (SD)
Mean FEAS (SD)
Mean FEDQ (SD)
Table 1
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Fourteen families in the control group continued their routine care
whereas two families in the control group acquired Floortime™ techniques from their friends who were already trained and they used this
technique in addition to their routine care with their children during the
control period. In order to protect the RCT design, an ‘intention to treat’
analysis approach was undertaken.
Thirty-one subjects completed the study. One parent from the intervention group refused to use Floortime™ technique and decided to drop
from the study after the first visit because they did not appreciate the goal
set for their child of increasing engagement before trying to make the
child ‘talk’.
Table 2 shows the mean (SD) changes of the three outcomes for the
control and intervention groups. The change of the FEAS score for the
control group reflects the overall developmental progression of only 1.9
(SD = 6.1), compared to the increment of 7.0 (SD = 6.3) for the intervention group. The Student t test shows that the difference is statistically
significant (p = .031). If the primary outcome of the child who dropped
out of the study was estimated as a worst-case scenario (zero gain in FEAS)
the difference is still statistically significant (F = 4.6, p = .045).
The CARS score change reflecting the overall autistic severity improvement of both groups shows a significantly greater decrease for the intervention group as compared to the control group.
Developmental rating of the children was estimated by the parent using
the Thai version of the Functional Emotional Questionnaires at baseline and
follow-up. The change in data for the intervention group shows that there
was a more statistically significant gain in it than in the data of the control
group.
If the secondary outcomes of the child who dropped out of the study
were estimated as worst-case scenarios (zero change in CARS score and
FEDQ) the differences are still statistically significant (F = 1.9, p = .004 for
CARS and F = 6.4, p = .007 for FEDQ).
AU T I S M
Table 2
FEAS
CARS
FEDQ
Mean (SD) changes in standard scores
Control
(n = 16)
Intervention
(n = 15)
Statistics
1.9 (6.1)
0.8 (1.2)
0.8 (1.4)
7.0 (6.3)
2.9 (2.0)
7.7 (8.1)
p = .031
p = .002
p = .006
Note. FEAS = Functional Emotional Assessment Scale (Greenspan et al., 2000); CARS = Childhood
Autism Rating Scale (Schopler et al., 1986); FEDQ = Functional Emotional Developmental
Questionnaires (Greenspan and Greenspan, 2002).
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Fidelity and outcomes
We compared the results of the intervention group to parents’ reports of
fidelity in delivering the weekly hours of intervention. It was found that
the parents who added home-based DIR/Floortime™ intervention 10 hours
per week or more (n = 9) made greater gains in FEAS than the parents who
added the intervention less than 10 hours per week (n = 6), but the difference was not statistically significant (p = .095).
Discussion
This pilot study reported an RCT of a DIR/Floortime™ parent training
intervention for preschool children with ASD. It employed a low-cost and
widely applicable professional-as-consultant, parent-as-therapist model.
Overall the parents in this study were well educated and families were
intact. Many families had one parent who was not working outside. Half of
the families had only one child. The families in this pilot study were volunteers and thus more likely to get the benefit from a parent training model.
Even though the aim of the study was to test the efficacy of Greenspan’s
DIR (Developmental, Individual-Difference, Relationship-Bases)/Floortime
model (Greenspan and Wieder, 1997) added to the children’s routine care,
there were some families in the intervention group who decided to partially
or totally change their approaches; 5 families decreased or stopped their
children’s time in a pre-school classroom in order to increase their Floortime™ at home. The reason for their decision was their satisfaction with
the results after they started the new intervention.
On the contrary, there were many parents who appreciated the results
of their attempt but found it difficult to implement and maintain the
recommended activities as much as they wished, often because of demands
of other children, work, or their family life. Another difficulty encountered
was that parents had to change their practice from giving ‘an order’ and
waiting for ‘the right response’ to challenging their children to be truly
interactive with them.
On the primary outcome measure, the intervention group showed a
gain of 7.0 points during the 3-month period, which was a statistically
significant difference compared to the gain of 1.9 points in the comparison
group. Translated clinically, the newly added intervention could help the
autistic child to better engage, relate and communicate with their caregiver
than those who received the routine behavioral interventions.
A similar effect was found on the secondary outcome measures. The
differences were directly attributed to the home-based training. This data
confirms the results of the treatment intervention based on DIR/Floortime
theory reported by Solomon and colleagues (2007).
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Compared to the results of Solomon’s study, in which the FEAS increased
from 38.1 to 44.6 within a 1-year period of DIR/Floortime-based intervention, our children in the intervention group showed similar results
within a shorter duration. The positive results shown in such a short period
could be explained by the fact that at baseline our children had fewer
opportunities for interaction and lacked adequate and appropriate treatment. They went to school too early and spent more time in school than
those in Solomon’s study. Many children in this study participated in special
education or regular preschool programs even while they were not yet fully
engaged with their parents. In such a situation the teacher or teacher’s
aides could not conduct one-on-one interaction with each child, and the
partially engaged autistic child was therefore being left self-absorbed most
of the time.
Another reason for this impressive improvement related to the fact that
children in our study had lower baseline scores than those in Solomon’s.
This prevented the possibility of a ceiling effect, and also allowed DIR/
Floortime™ work to address more basic capacities such as regulation and
attention.
In addition, it was found that the majority of the parents in the beginning of our study did not know how to play with their children. They spent
most of their time controlling and teaching their children. This may be the
results of Thai culture and educational background that do not prefer the
young to express themselves but rather do only what adults tell them to
do. This was different from the parents in Solomon’s study. As a result,
the parent in our study had a greater chance to improve their abilities after
being coached.
In the situation of being determined as under-treated, adding homebased DIR/Floortime™ intervention for an average of 15.2 hours per week
for three months could ensure more statistically favorable outcomes.
There were a number of methodological limitations. Since the recruitment process included a flyer advertising this new intervention, the results
of the study could have been affected by involving families that were particularly interested in learning this new intervention. There was some contamination, with varying types and amounts of interventions in the control
group. Additionally, the treatment group also contained a varying amount
of intervention.
Families in the intervention group used DIR/Floortime™ in addition to
their children’s routine and behavioral treatment, whereas the control group
received only their routine behavioral care. It is possible that the results,
which demonstrated gains in the intervention group, could be attributed
not only to the DIR/Floortime intervention, but simply to more time spent
with parents and more time spent in intensive intervention.
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D I R / F L O O R T I M E ™ P A R E N T T R A I N I N G I N T E RV E N T I O N
The outcome measurement also presented some limitations. Our main
measurement was the FEAS, which is DIR theory–specific. Information on
other important outcomes was not measured, such as cognitive skills, social
functioning and school performance. Additionally, the impact of the competing demands of other children, work, and family life was not measured.
Although it is difficult to verify the accuracy of parent’s reports regarding the number of hours spent doing the intervention at home, parents’ logs
have been systematically used by other studies evaluating parents’ delivery
of intervention (Solomon et al., 2007; Mahoney and Perales, 2005; Dawson
et al., 2010).
In conclusion, this trial confirmed the replicability of the home-based
DIR/Floortime™ intervention across sites. A large-scale randomized controlled trial should be carried out to enable investigators to analyze variables, such as subjects’ characteristics, that may be associated with favorable
or unfavorable responses to interventions. In addition, the outcome measurement should be more comprehensive.
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Autism
http://aut.sagepub.com/
Pilot study of a parent training program for young children with autism: The PLAY
Project Home Consultation program
Richard Solomon, Jonathan Necheles, Courtney Ferch and David Bruckman
Autism 2007 11: 205
DOI: 10.1177/1362361307076842
The online version of this article can be found at:
http://aut.sagepub.com/content/11/3/205
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On behalf of:
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Pilot study of a parent
training program for young
children with autism
autism © 2007
SAGE Publications
and The National
Autistic Society
Vol 11(3) 205–224; 076842
1362-3613(200705)11:3
The PLAY Project Home Consultation program
RICHARD SOLOMON
Ann Arbor Center for Developmental
and Behavioral Pediatrics, Michigan, USA
J O N AT H A N N E C H E L E S
Northwestern University Feiberg
School of Medicine, Chicago, USA
C O U RT N E Y F E R C H
Wayne State University Medical School,
Detroit, USA
D AV I D B R U C K M A N
Cleveland Department of Public Health,
Ohio, USA
The PLAY Project Home Consultation (PPHC) program
trains parents of children with autistic spectrum disorders using the
DIR/Floortime model of Stanley Greenspan MD. Sixty-eight children
completed the 8–12 month program. Parents were encouraged to
deliver 15 hours per week of 1:1 interaction. Pre/post ratings of videotapes by blind raters using the Functional Emotional Assessment Scale
(FEAS) showed significant increases (p ≤ 0.0001) in child subscale
scores. Translated clinically, 45.5 percent of children made good to very
good functional developmental progress. There were no significant
differences between parents in the FEAS subscale scores at either preor post-intervention and all parents scored at levels suggesting they
would be effective in working with their children. Overall satisfaction
with PPHC was 90 percent. Average cost of intervention was $2500/
year. Despite important limitations, this pilot study of The PLAY Project
Home Consulting model suggests that the model has potential to be a
cost-effective intervention for young children with autism.
A B S T R AC T
K E Y WO R D S
autism;
DIR model;
intervention;
parent;
training
ADDRESS
Correspondence should be addressed to: R I C H A R D S O L O M O N , MD,
2930 Parkridge Drive, Ann Arbor, MI 48103, USA. e-mail: [email protected]
For further information on UK workshops in September 2007,please see www.mindbuildersconsulting.com, or contact Sibylle Janert (e-mail: sibylle.janert.info).
www.sagepublications.com
DOI: 10.1177/1362361307076842
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There is a growing consensus that young children (18 months to 6 years
of age) with autistic spectrum disorders (ASDs) benefit substantially from
comprehensive and intensive therapies (American Academy of Pediatrics,
2001; Dawson and Osterling, 1997; Filipek et al., 2000; Howlin, 1998;
Hurth et al., 1999; Lord et al., 2001; Matson et al., 1996; Rapin, 1997;
Rogers, 2000). Comprehensive therapies address the multiple areas of
developmental differences (i.e. language, sensory, social, educational) in
children with ASDs (Campbell et al., 1996; Rogers, 2000). Intensive
therapies are characterized by: 25 hours per week; high teacher to pupil
ratios (1:1 or 1:2); early intervention (age 18 months to 6 years); and structured, strategic approaches that address the language, social and behavioral
deficits of ASDs (Lord et al., 2001). Typically the therapies are implemented
over 2–4 years until the child is 6 years old. The cost of these interventions
when delivered by professionals is very expensive, ranging between
$25,000 and $60,000 per year. When children who receive intensive
intervention improve their functioning, the cost savings for society may be
substantial (Jacobson and Mulick, 2000; Järbrink and Knapp, 2001). Obviously, an efficient, cost effective intervention is needed both clinically and
financially. A pilot project – The PLAY Project Home Consulting program
– is described which is designed to provide an intensive, cost effective,
structured intervention that addresses the language, social and behavioral
deficits of children with ASD. Specifically, the program evaluation of The
PLAY Project’s Home Consultation (PPHC) program is reported here.
Among the intensive therapeutic approaches, two broad types of
interventions – behavioral and social-pragmatic – are typical (Prizant and
Wetherby, 1998). Though the approaches differ deeply in their fundamental
theoretical underpinnings, they share key elements: early, intensive, oneon-one intervention to start, a strategic direction (language, social skills
and/or pre-academic skills) and structured programs.
The prototypical behavioral approach is represented by the work of Lovaas
and associates (Lovaas, 1987; McEachin et al., 1993; Smith and Lovaas,
1998). Based on applied behavioral analysis (ABA), this approach shapes the
child with autism’s behavior through an operant learning paradigm using
discrete behavioral trials to increase language and socialization and decrease
repetitive behaviors. ABA methods have been carefully evaluated (Matson
et al., 1996). Lovaas’s original randomized controlled trial found that 47
percent of the 19 intervention children were mainstreamed in regular
classrooms with only one of the control group children making equivalent
gains (Lovaas, 1987). Long term follow-up of the original study group
revealed that gains were maintained (McEachin et al., 1993). Careful analysis
of the original study, however, has revealed several serious design flaws; and
various replications of the model have fallen short of the original ‘best
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S O L O M O N E T A L . : P L AY H O M E C O N S U LTAT I O N
outcome’ criteria (including especially being in typical classrooms without
aide support) (Shea, 2004). Limitations of this behavioral approach include:
(1) the difficulty of maintaining the 40 hours per week of intervention, (2)
the high quality of supervision needed and (3) the difficulty replicating
findings in non-research settings (Mudford et al., 2001). Several other
studies, using ABA methods, have shown that children can make significant
gains in specific targeted behavioral areas using this approach, though
maintenance and generalization of skills were problematic (Matson et al.,
1996). Critics often point to difficulties with generalization to natural
environments, continuing difficulties with social pragmatic skills with peers,
and the aversive nature of the discrete trial type of intervention. The original
punishment-based program is no longer used and thus throws doubt on
the generalization of outcomes to current programs.
The prototypical social-pragmatic approach is represented by the work of
Greenspan and his developmental, individualized and relationship-oriented
(DIR) model (Greenspan and Wieder, 1997a) designed to increase socialization, improve language and decrease repetitive behaviors. Joint attention
and the promotion of contingent interaction are at the methodological core
of the DIR model (Kasari et al., 2001; Siller and Sigman, 2002). Greenspan’s
case series (Greenspan and Wieder, 1997b) involved a cohort of 200
children. This sample had a highly motivated, middle- to upper-income
parent population. It can only be considered as an observational study, as
there were no controls and no detailed description of the specific intervention protocols used. Nonetheless, after 2 years of intervention, 58 percent
of treated children showed improvements and no longer met the criteria
for ‘autistic disorder’ on key measures (e.g. CARS). The PLAY Project uses
Greenspan’s theoretical DIR framework to inform its play-based intervention approach. The DIR model is one of several social-pragmatic programs
in clinical use. Several other types are extant (Aldred et al., 2004; MacDonald
and Carroll, 1992; Mahoney and Perales, 2005; Prizant and Wetherby, 1987;
Rogers and Lewis, 1989). Despite clinical acceptance of play-based, social/
pragmatic approaches, the scientific evidence for their efficacy has been
limited (Dawson and Galpert, 1990; Rogers, 2000; Siller and Sigman,
2002). These approaches are more difficult to operationalize and quantify
than behavioral approaches (Rogers, 2000).
Though 25 hours per week of intensive intervention is recommended
by the National Research Council report (Lord et al., 2001), the approach
is not feasible in most financially strapped state departments of education
and is well out of financial reach for most families to obtain privately if
delivered by professionals. Additionally, there is a national shortage of
personnel trained in these approaches even as the number of children
identified with ASDs is increasing (Croen et al., 2002; Scott et al., 2002).
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11(3)
Recent prevalence estimates range from 6.5 per 1000 to 4 per 1000 children
(Bertrand et al., 2001; Fombonne, 1999). Until more developed, institutionalized services are available, a staged approach to intervention using
parents as first interventionists has been recognized as the most practical
way to deliver initial services (Anderson et al., 1987; Howlin, 1980; Rogers,
1996; Schopler and Reichler, 1971; Schreibman and Britten, 1984).
Methodologically rigorous research on parent training interventions is
scant (Drew et al., 2002) but promising. Diggle et al. (2003) were able to
find only two of 68 studies on parent training for young children with autism
that met their strict criteria (randomized controlled studies). Jocelyn et al.
(1998) evaluated a caregiver-based intervention program for children with
autism in community day-care centers. Using an eclectic 12 week training
approach for parents and day care personnel, this randomized controlled
study showed that children with autism improved language skills significantly and parents reported greater satisfaction when compared to the control
group. Smith et al. (2000) used a randomized controlled design of parent
training versus intensive ABA treatment. His group found better outcomes
for the intensive treatment approach though child outcomes in the parent
training group, while statistically less successful on some measures, were
comparable clinically. Mahoney and Perales (2005) used a controlled design
and a parent training model very similar in hours and methods to The PLAY
Project. Their group found highly significant improvements in the intervention group on social reciprocity and language measures. Finally, a recent
randomized controlled trial of parent training, using a social communication
intervention methodology, showed statistical and clinical improvement
compared with controls on the ADOS (Autism Diagnostic Observation Scale)
total score, particularly in reciprocal social interaction (Aldred et al., 2004).
Less rigorously designed studies of parent training also showed promising results in the areas of language, IQ, social skills and school performance.
Sheinkopf and Siegel (1998), in a natural experiment, compared parentled home-based behavioral intervention (i.e. ABA) to a matched control
group receiving school-based, educational intervention. They showed significant improvements in IQ and school placement in the intervention group.
Ozonoff and Cathcart (1998) used a 4 month, structured home/parent
training component in addition to the children’s TEACCH program. They
showed highly significant improvements on psycho-educational measures.
Even brief parent training interventions have shown immediate effects.
Dawson and Galpert (1990) taught mothers to engage in imitative play
with their 2- to 6-year-old children with autism. Increased gaze at the
mothers’ faces and creative toy play were found. In an interesting longitudinal study, Siller and Sigman (2002) found that certain behaviors of parents
predicted subsequent development of the children’s communication skills.
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In particular, caregivers who synchronized their behaviors to their children’s
attention and activities helped children with autism develop superior joint
attention and language when compared to parents who were less contingent or synchronized. In short, parents appear to be able to learn various
methods of intervention to help them effectively interact with their young
children with autism.
In this article we present the program evaluation results of a piloted
parent training program, called The PLAY (Play and Language for Autistic
Youngsters) Project Home Consulting model. Over the last seven years, the
PLAY Project has established itself in southeastern Michigan as a multifaceted, statewide, autism training and early intervention center. Fifteen
agencies use the model in Michigan and, nationally, 50 agencies in 17 States
are using the model. The PLAY Project’s theoretical framework is based on
the developmental, individualized and relationship-oriented (DIR) model
of Stanley Greenspan MD (Greenspan, 1992; Greenspan and Weider,
1997a). The DIR model focuses on helping children with communication
disorders improve social reciprocity and functional/pragmatic communication, an often ignored source of developmental delay (Simpson et al.,
2003). The model is typically comprehensive, intensive and multidisciplinary in approach. It includes early referrals especially to speech and
language and occupational therapy among other services. The project is
consistent with National Research Council recommendations (Lord et al.,
2001) including especially the need for intensity (up to 25 hours per week),
one-on-one intervention, early start (ages 18 months to 6 years) and strategic direction (social reciprocity).
The PLAY Project has four clinical components:
1 medical consultation at the Ann Arbor Center for Developmental and Behavioral Pediatrics clinic with referrals to community resources
2 training including both community-based workshops for parents, pediatricians
and professionals and agency trainings in The PLAY Project Home Consultation model
3 parent support and advocacy services called the Michigan Autism Partnership
(MAP)
4 The PLAY Project Home Consultation (PPHC) program which is described in
the methods section below.
To our knowledge, this is the first report of outcomes related to a programmatic, carefully operationalized approach based on the DIR model.
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Methods
Subjects
All children referred to the University of Michigan Developmental and
Behavioral Pediatrics Clinic from October 2000 to February 2002 were
assessed clinically by the developmental/behavioral pediatrician (RS).
Children were eligible if they were given a diagnosis of autistic disorder,
pervasive developmental disorder not otherwise specified (PDD-NOS) or
Asperger syndrome according to the Diagnostic and Statistical Manual (DSM-IV)
criteria (American Psychiatric Association, 1994). Children were excluded
if they had any of the following: an age less than 18 months or over 6 years
at the time of diagnosis; residence of more than 60 miles outside the city
of Ann Arbor (home consultants travel to families’ homes); participation
in any other intensive intervention (e.g. behavioral or social-pragmatic
program delivering >10 hours per week of 1:1 or 1:2 teacher to pupil
ratio); or the presence of a severe medical disability. Sixty-eight children
had pre/post data available.
Consent procedure
The study design, protocol, and consent forms were reviewed and approved
by the University of Michigan Institutional Review Board. Written informed
consent was obtained from the child’s parents or guardian before enrollment in the study.
Intervention: The PLAY Project Home Consultation program
Families with young children (1.5–6 years) who live in southeast Michigan
are eligible to receive the services of The PLAY Project’s three trained home
consultants. The consultants, who have degrees in child development fields
(one MSW, two recreational therapists), receive 1 month of structured,
intensive and supervised training in the DIR theory and The PLAY Project
model before beginning their work with families. Their training includes
readings on the DIR theory and practice, the use of a structured training
manual and regular supervision visits with the program’s medical director.
Home consultants then make monthly, half-day (3–4 hour) visits to families’
homes to teach parents how to provide intensive, one-on-one, play-based
(social pragmatic) services to their young children with autism. A key
component of training involves review of videotapes obtained during these
home visits and assessment of the child’s progress. The program is paid for
with a combination of fee for service and foundation grant funding. Average
cost per family per year was between $2500 and $3000, depending on the
number of annual visits (e.g. 10 visits/year = $2500).
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A detailed training manual is also used to train parents in The PLAY
Project approach. All parents in this study learned about the play-based DIR
methods through a 1 day workshop given by the project’s director (RS).
The aim is to help parents understand the approach needed to contingently
and reciprocally engage their children a minimum of 15 hours per week
even as the child makes developmental progress. Time spent can be in the
form of structured sessions (e.g. 20 minutes play periods) or by taking
advantage of incidental daily activities (i.e. mealtime, bathtime, bedtime).
A clearly defined seven-step ‘skill sequence’ is used to train parents. In step
1, parents are first taught the principles of play-based intervention and how to
strategically apply these principles to (a) their child’s preferred way of
relating, (b) their child’s sensory motor preferences and deficits and (c) their
child’s current level of functional development. The principles are indebted
in part to Greenspan’s DIR theoretical framework. In step 2, they learn to
assess their child’s unique profile using the above principles and strategies. In
step 3, a list of activities that are likely to be engaging is generated. In step 4,
parents are taught methods of observing their child’s cues, following their lead and
‘reading’ the child’s intentions in order to increase reciprocal interaction. In step 5, specific
techniques enhance the basic methods of following the child’s lead. After
parents observe the consultants modeling the skill sequence, then in step
6, video assessment offers immediate feedback to parents who can review how
they are relating with their child. The consultants are taught to be supportive, non-critical and outcome oriented. In the final step, step 7, as the
child makes progress up the functional developmental hierarchy, home
consultants help parents refine the curriculum,methods and techniques. Thus, the skill
sequence is repeated continuously so that methods are synchronized with
the child’s progress.
Each monthly home visit uses modeling, coaching, video assessment and written
objectives to help implement and then refine the skill sequence. Modeling
involves the consultants showing parents how to use the strategies, methods
and techniques of the play-based approach. Coaching involves the consultant
observing the parents as they play with their child and giving them positive
feedback about their performance. A video assessment of parents’ interactions
occurs at the end of the session. Written objectives are derived from a clinical
tool called The Pre-School Autism Rating Scale (PARS) (Klaw and Solomon,
1990) that profiles the young child with autism’s functioning in key areas
of interest (communication, reciprocal interaction, social skills, repetitive
behaviors) geared to the DIR model. Home consultants review selected
cases and videotaped segments with the project’s medical director on a
weekly basis. Observations and suggestions are recorded on a feedback
form and shared with parents at the next visit. These sessions also serve as
further training for the PLAY home consultants.
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Assessment procedure
All children diagnosed with autistic spectrum disorders were evaluated,
using a pre/post design, at the start and at the end of the first year of The
PLAY Project’s Home Consulting program. Baseline demographic characteristics included marital status, educational status of each parent, number
of parents working outside the home, number of siblings, participation in
special education preschool programs, and the number of hours and type(s)
of interventions being used during the study period.
The following measures were administered before and after intervention to assess changes in children’s behavior and development as well as in
parents’ behavior and satisfaction with home consulting services.
AU T I S M
The Functional Emotional Assessment Scale (FEAS) ratings The FEAS
(Greenspan et al., 2001) was used at baseline and the end of the study
to measure changes in caregiver behaviors and in children’s functional
(social/pragmatic) development. The FEAS is a valid and reliable, agenormed, clinical rating scale that can be applied to videotaped interactions
between children with autism and their caregivers. The FEAS is divided
into two parts – caregiver and child – with six subtests in each part
directly related to Greenspan’s six functional developmental levels (FDLs:
Greenspan and Wieder, 1997a): (1) self-regulation and interest in the
world; (2) forming relationships, attachment and engagement; (3) twoway, purposeful communication; (4) behavioral organization, problem
solving and internalization; (5) representational capacity; and (6) representational differentiation. According to Greenspan, typically developing
children achieve early two-way communication by 7–9 months, which
would correlate to an FDL 1–2. FDL 3 is achieved between 10 and 12
months, FDL 4 between 13 and 18 months, FDL 5 from 25 to 35 months,
and FDL 6 between 3 and 4 years of life. On the FEAS, the higher the
score, the more functional the child’s behavior and the higher the child’s
developmental level. Children with autism are by definition delayed in
their acquisition of functional development (i.e. engagement, initiation,
reciprocal interaction, problem solving, etc.). Their FEAS scores will, as a
result, be lower than would be expected of a typically developing, sameage peer.
The FEAS total scores were used as the primary measure of overall
progress for the caregivers and children in this study. To give an estimate
of clinical progress, FEAS subscale scores were used (referred to as FEAS scaled
scores) based on a predetermined scoring system (see Table 1).
To establish inter-rater reliability for the FEAS, two raters, blind to the
caregiver’s and child’s clinical status, were trained to reliability using a selection of 20 training tapes of children with autism who ranged in severity
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Table 1
Assignment of scaled scores based on subscale FEAS scores*
Functional
developmental level
FEAS possible
score by level
FEAS score to obtain
0.5 level score
FEAS score to obtain
whole level score
1
2
3
4
5
6
14
16
8
4
14
10
5–10
6–12
4–6
2
4–7
2–3
11–14
13–16
7–8
3–4
8–14
4–10
* Example: Child FEAS Level 1 score = 12
Child FEAS Level 2 score = 8
Child FEAS Level 3 score = 7
Clinical FDL assigned to child = 1
Clinical FDL assigned to child = 0.5
Clinical FDL assigned to child = 1
–––
Total FDL assigned: 2.5
across FDLs. Tapes were prepared and reviewed to contain events that captured
the items in the FEAS.
Clinical ratings Home consultants subjectively rated children’s clinical
progress using the six-point scale (with 0.5 increments) related to Greenspan’s
six functional developmental levels (Greenspan and Weider, 1997a).
Intensity At their first visits, families were supplied with a set of daily
logs in order to help them estimate the average number of hours per week
that they used PLAY Project methods as well as any other programmatic
methods of intervention (e.g. speech and language therapy, occupational
therapy, etc.) for their child. Home consultants recorded these estimates at
the conclusion of each home visit in their clinical notes for the visit.
Client satisfaction survey Parents were asked to rate their experience
with The PLAY Project’s Home Consulting program at 3 months and at 1
year. Only the 12 month overall satisfaction survey results are reported, as
the 3 month and 12 month survey results were nearly identical.
Statistical analysis
FEAS reliability To determine the reliability of the raters’ scores across
all of the testing videotapes, paired t-tests (two tailed) were used to test
whether the differences between the raters’ scores were equal to zero for
each FEAS subscale and total score per both caregiver and child outcomes.
An observer agreement analysis using a kappa statistic was applied to four
measures (caregiver pre and post, child pre and post) to test the observer
agreement between two raters. Data from 20 randomly chosen subjects
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were selected from the pilot data and were tabulated. Finally, the training
tapes were segregated from the testing tapes.
AU T I S M
FEAS scores Total and scaled FEAS scores for the caregiver and the child
were compared pre- and post-intervention using two-tailed paired t-tests.
Scaled FEAS scores provide estimates of functional developmental level (FDL)
using 0.5 increments from FDL 1 through 6 (i.e. 1, 1.5, 2, 2.5, etc.).
Autism severity was measured using a numeric scale based on initial
medical evaluation by the developmental pediatrician. Medical evaluation
scores reflect severity from severe, moderate or mild autistic disorder (5,
4, and 3, respectively,) pervasive developmental disorder not otherwise
specified (2) and Asperger syndrome (1).
Intensity Intensity was rated based on the amount of intervention provided
by parents of play-based intervention per week. Families consistently
reporting 15 or more hours per week were rated as 1 (high intensity), 10
to 14 hours per weekas 2 (moderate) and <10 hours per week as 1 (low
intensity). Two-tailed paired t-tests were used to test the relationship of
intensity to total FEAS scores.
Satisfaction surveys Parental satisfaction with PLAY project home consulting services was rated as very satisfied, satisfied, somewhat satisfied or not
satisfied.
Clinical ratings Clinical estimates of improvement, from baseline to
post-intervention, were provided by the home consultants using ratings of
functional developmental level (FDL) 1 through 6 (i.e. 1, 1.5, 2, 2.5, etc.).
To test clinical improvement between baseline and post-intervention, twotailed, paired t-tests were used.
Results
Withdrawal and losses
Seventy-four children diagnosed with autistic spectrum disorders from the
university’s developmental behavioral pediatrics clinic were recruited to
The PLAY Project within a 14 month period and enrolled in the study. Six
families were unable to complete the year-long evaluation. Reasons for
discontinuing participation included decisions to do other therapies (n =
1), moves away from the area (n = 3) and financial considerations (n = 2).
Sixty-eight subjects were analyzed in this study.
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Sample characteristics
Autism severity by DSM-IV diagnosis is depicted on Figure 1. Demographics and clinical characteristics of the sample are presented in Table 2. On
average, children were aged 3.7 years (SE = 0.2) at enrollment with a range
of 2 to 6 years. There were 51 boys and 17 girls. Average age at diagnosis
was 35 months (SE = 1.5). There were three African-American children,
one of whom is of mixed race. No Latino/Hispanic families were part of
the pilot sample. One child had Down’s syndrome and two children had
seizure disorders. Approximately 70 percent of mothers and 70 percent of
fathers had bachelor’s degrees or above.
Other programs and interventions Twelve children less than the age
of 3 were enrolled in an early intervention program which involved approximately 2 hours of school-district-based intervention per week. The remaining 56 children older than 3 years of age were enrolled in special education
DSM IV Diagnoses
25
20
Severe 10
Moderate 22
15
Mild 18
PDD NOS 14
10
Aspergers 3
5
0
Figure 1
Sample characteristics by severity
Table 2
Parent and child characteristics
Variable
Mean
Range
Child age at entry (years)
Age, mother (years)
Age, father (years)
Married (%)
Number of siblings
3.7
37
38
91
0.75
2–7
28–49
27–53
0–3
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preschool programs which typically provided four to five half-days (approximately 21⁄2 hours each day). Importantly, none of the Michigan intermediate school district preschool programs serving the children in this study
routinely provided intensive (more than 5 hours per week), individualized
behavioral interventions (e.g. ABA) to any of the children in this study.
AU T I S M
Functional Emotional Assessment Scale
Parent and child outcomes Table 3 summarizes the primary caregiver
and child FEAS outcome measures. There was no change in parents’ FEAS
scores before and after PLAY implementation (p = 0.63). However, there was
an increase in the children’s total and scaled FEAS scores over the 12 months
of the project (p ≤ 0.0001). Based on FEAS scaled scores, 45.5 percent of
children made good to very good functional developmental progress over
the study period. No statistical relationship was found between initial ASD
severity and FEAS total or FEAS scaled scores.
Intensity and outcomes We compared the FEAS ‘scaled scores’ (Figure
2) to parents’ reports of intensity in delivering the weekly hours of intervention. While not statistically significant, our data suggest an association
between fewer hours per week of intervention and lower outcome scores
(p = 0.09).
Reliability Using standard statistical methods we found there to be high
reliability (p ≤ 0.05, two-tailed t-test) between the two raters’ scores in
measuring both the caregiver’s and child’s total and scaled FEAS score at
pre- and post-intervention testing. Similarly, kappa analysis (Fleiss, 1975;
Fleiss and Cohen, 1975) between raters for individual items, pre to post
for caregiver and child, on the FEAS revealed very good agreement: caregiver pre-test, kappa = 0.71 (95% CI, 0.66, 0.77)); caregiver post-test,
kappa = 0.64 (95% CI, 0.58, 0.70); child pre-test, kappa = 0.78 (95% CI,
0.73, 0.82); child post-test, kappa = 0.65 (95% CI, 0.60, 0.70).
Table 3
FEAS: caregiver and child outcomes (N = 68)
FEAS caregiver
FEAS child
FEAS scaled child
Clinical scores
Pre
Post
86
38
3.6
2.5
86
45*
4.5*
4.2*
* p ≤ 0.0001.
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FEAS Outcome ⫻ Intensity
18
16
14
Outcomes
12
VG/Good
10
8
Fair
6
No Change
4
2
0
High
Moderate
Low
Intensity
Figure 2
Comparison of scaled FEAS improvement and intensity
Clinical outcomes
Children’s progress using clinical FDL levels increased significantly (p <
0.0001) from baseline to the end of the first year’s intervention (Table 3).
Based on clinical scores, 52 percent of children made very good (1.5 FDLs
or better) clinical progress over the study period, with 14 percent making
good progress (1 FDL). Clinical scores were also compared to FEAS scaled
scores (Table 4). Clinicians consistently over-rated improvements when
compared to the FEAS scaled scores of blinded raters. No statistical relationship was found between initial ASD severity and clinical scores.
Table 4
Clinical improvement by FEAS outcome
Clinical improvement (1L,2M,3H)
FEAS outcome
Total
Frequency
G/VG
F
NC
VG (>1)
Good (=1)
Fair (≤0.5)
Total
24
4
3
31
13
6
4
23
8
3
3
14
45
13
10
68
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Satisfaction
Of the 68 families, 74 percent (N = 50) of families completed satisfaction
surveys. Of these, 70 percent (N = 35) were very satisfied with The PLAY
Project, 10 percent were satisfied and 20 percent were somewhat satisfied. None were dissatisfied. Parents who were somewhat satisfied most
commonly rated The PLAY Project as not providing enough services.
AU T I S M
Discussion
This is the first report of a program evaluation based on Greenspan’s
DIR (developmental, individual differences, relationship-based) theory
(Greenspan, 1997). Over the last 4 years, the PLAY Project has piloted a
community-based, ‘train-the-trainer’ model with the aim of translating
DIR’s broad theoretical principles into a well operationalized, communitybased intervention program.
Parent skills
The PLAY Project has taken the DIR theory and created a manual, training,
and evaluation method. The ‘PLAY skill sequence’ (see ‘Intervention’ above),
the use of videotape assessment and the regular, half-day, monthly home
visits appear to be an efficient and cost effective way to teach families in a
community-based setting. We find that a large majority of parents are
capable of interacting with their young children with autism in a reciprocal and contingent manner. Indeed by the time of the first video evaluation
85 percent of parents were rated as appropriately interactive. Families
often attended community-based workshops before beginning The PLAY
Project’s Home Consulting program. They may also have received one visit
with the consultant before the initial FEAS was done. Despite sequential
enrollment of children and families, the sample reflects a middle- to uppermiddle-income group characteristic of the population served in the Ann
Arbor, Michigan vicinity. Indeed, a large percentage of the parents were
well educated with intact families. Many families had one parent who was
not working. The number of siblings in the family was limited to less than
two on average. These facts may, in part, explain the ability of most families
to play in a sensitive and contingent fashion. Alternatively, this group of
families may have had the innate ability to interact well with their children.
In short, the families in this pilot study were self-selected and likely to
benefit from a parent training model to help their young child with autism.
Intensity and outcome
On the other hand, there was a nearly statistically significant trend that
suggests that parents who were not able to spend as much time in interaction
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(low intensity) had children who did not make as much progress regardless of functional developmental level. This dose dependent outcome suggests
that it is not enough to know what to do; the number of hours per week
spent in intervention also matters (Lord et al., 2001).
Children’s developmental gains
The results also suggest that, on the more conservative FEAS ratings, 45.5
percent of the children participating in the project made good to very good
functional developmental gains. When rated clinically by the home consultants, 66 percent of the children rated made very good gains. Both FEAS
scores (FEAS total and FEAS scaled scores) and the clinical scores (clinical
FDLs) were highly statistically significant pre to post. A gain of one or more
levels of functional development within an 8–12 month time frame is also
clinically significant. When a child moves from an FDL 2 to an FDL 3, for
instance, this represents the difference between being self-isolating and
being able to consistently communicate in a two-way interactive fashion.
From an age norm perspective this represents an advance of between 6
months and a year in development. Thus, nearly half of the children made
clinically significant developmental gains, with most making very good
(i.e. greater than 1.5 FDL of progress) clinical gains.
While the families were highly motivated and skilled at interaction, the
children in the sample, however, did represent the typical range of severity
along the autistic spectrum. There was approximately equal representation
between mildly, moderately and severely affected individuals. Diagnosis was
made using the DSM-IV criteria by an experienced pediatric clinician. Boys
were overrepresented in the typical 4:1 ratio reported in the literature and
most children (70%) were between 2 and 4 years of age. Statistically there
were no differences in outcomes based on initial severity. The literature
consistently reports poorer outcomes for more severely affected children
(Harris and Handelman, 2000). Clinically, it is very hard to predict which
children will do well and which will not, especially when the children are
very young (18 months to 3 years). Since the groups, when divided into
severity types, were relatively small, type II errors cannot be ruled out. The
results of child outcomes cannot readily be explained on the basis of selecting high-functioning children with autism.
Study limitations
Several limitations of the present study need to be noted. First, without a
control group, it is impossible to know whether the changes in post FEAS
scores are directly attributable to the home-based training. One goal of a
pilot study is to pilot the procedures. A phase II comparative study is
planned. Second, the finding that the child’s FEAS scores were lower
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(though not quite statistically significant) for the children whose parents
had the fewest hours of interaction suggests that parents’ time of involvement may be more important than the specific effects of the training
program. It is a tenet of the DIR model, however, that in order to help the
child increase functional development they need the guidance of knowing
what to do at each functional developmental level. It is this guidance that is
offered by the home consultants and incorporated into the iterative PLAY
skill sequence. Nonetheless, theoretically, simply instructing a parent, who
is already skilled in interaction, to play 15 hours per week without further
guidance may be enough to induce changes in the child’s functional
development over time. Future studies should include an ‘education only’
control group that addresses this issue.
Nearly all children in this study were simultaneously enrolled in standard
special education early intervention or preschool programs. While it could
be argued that these programs confound the outcomes, the total number
of hours of other one-on-one, intensive interventions was very limited. In
Michigan, intensive interventions in the school system (i.e. ABA, DIR, etc.)
are not typically provided. The literature suggests that even when children
are given up to 10 other hours of intensive intervention it does not substantially affect the course of their development (Lovaas, 1987). Recent evidence,
however, from more ‘social pragmatic’ intervention studies suggests that 15
hours per week may be sufficient to achieve substantial developmental gains
(Aldred et al., 2004; Mahoney and Perales, 2005). The development of
children with autism who do not receive substantial intervention is poor. In
the longest prospective follow-up study with a sound methodological design
(Rutter, 1970) fewer than 2 percent could be considered free of clinically
significant problems by adulthood. Others have found similar long term
courses for children receiving traditional school-based programming alone
(Freeman et al., 1991; Nordin and Gilberg, 1998). Thus our results cannot
be explained easily on the basis of a natural course of improvement.
AU T I S M
Methodological weaknesses
There were a number of other methodological weaknesses in this pilot
project. More in-depth, repeated and objective measures of development
(i.e. language, IQ and/or developmental outcomes) will need to be added
to improve the measurement of the outcomes. Parent measures of stress
and the impact of this demanding method of intervention should be added
to the evaluation protocol (Bristol, 1985; Shorten, 1996). Intensity was a
poorly operationalized concept. Parents were poor at keeping daily logs and
their rough estimates of interaction are likely to be inaccurate especially
given the social desirability of appearing to spend more time with your
child. Though children improved substantially on the FEAS, they did so
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usually with one primary caretaker. Whether or not the gains they made
generalized to other environments should be measured in future studies of
this kind.
Conclusion
The DIR model supports parents as their child’s primary play partners and
offers naturalistic play-based interactions that engage the child’s affect.
Greenspan’s ‘affect diathesis hypothesis’ asserts that it is affect that drives
meaningful development. While children with autism clearly can benefit
from a ‘drill for skills’ approach, it is important to recognize that parents
also play with their children as a primary activity. It is a tenet of The PLAY
Project that a child with autism’s love of other people will depend on other
people doing what he loves. Given the increasing prevalence of these
disorders and the extraordinary costs of providing therapist delivered
intensive intervention, more rigorous studies are urgently needed to establish the clinical and cost effectiveness of this type of low cost, play-based
approach.
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Occupational Therapy In Health Care, 25(4):298–314, 2011
C 2011 by Informa Healthcare USA, Inc.
Available online at http://informahealthcare.com/othc
DOI: 10.3109/07380577.2011.606460
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Family-Centered Occupational Therapy and
Telerehabilitation for Children with Autism
Spectrum Disorders
Varleisha Gibbs1 & Susan Toth-Cohen2
1
Universal Progressive Therapy, Inc., Nutley, NJ, USA, 2 Occupational Therapy Doctoral
Program, Jefferson School of Health Professions, Thomas Jefferson University,
Philadelphia, PA, USA
ABSTRACT. The purpose of this pilot project was to explore the use of telerehabilitation for collaborative occupational therapy sessions with parents of children with autism
spectrum disorders (ASD). The aim was to improve carryover of therapeutic strategies
by parents to address children’s sensory modulation in their natural environments. Four
families participated in clinic-based sessions with the therapist followed by online sessions for six weeks. Data consisted of family schedules, sensory diets, archived webcam
sessions, and Sensory Processing Measure Home Form scores before and after initiation
of the telerehabilitation sessions. Results demonstrated the potential for using telerehabilitation as a tool to provide collaborative occupational therapy in order to improve
carryover of home programs for children with ASD by providing opportunities for parents to ask questions, review sensory techniques, and understand the therapist’s clinical
reasoning
KEYWORDS. Telerehabilitation, family centered, autism, telehealth, sensory integration
With the rise in diagnosis of autism spectrum disorders (ASD), outpatient services are sought more frequently than in previous years (Shimabukuro, Grosse,
& Rice, 2008). Clinic-based occupational therapy services are among the outpatient services provided to children with ASD. Children with ASD have atypical responses to sensory stimuli, resulting in impaired ability to regulate and organize
sensory input, and they are often unable to achieve or maintain necessary levels of
sensory modulation for participation in typical childhood activities. Occupational
therapy using a sensory-based approach to treatment has been shown to mediate
sensory modulation abilities, allowing some children to realize improvement in
their daily functioning (Baranek, 2002).
Parental involvement plays a vital role in the success of occupational therapy
intervention for children with ASD (Cohn, Miller, & Tickle-Degnen, 2000). In
Address correspondence to: Varleisha Gibbs, 164 Brittany Court, Clifton, NJ 07013, USA. Tel: 973-800-6291
(E-mail: [email protected]).
(Received 26 June 2010; revised 14 July 2011; accepted 15 July 2011)
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299
the clinic, skilled occupational therapists provide deliberate and focused treatment
techniques in stimulating environments that meet the sensory needs of children,
thereby enabling occupational performance (Cohn et al., 2000). As a way to foster
carryover of occupational therapy treatment to environments outside of the clinic,
occupational therapists often provide parents with recommendations for sensory
diets and other home programs (Cohn et al., 2000).
Throughout the continuum of occupational therapy services, parental involvement is critical, with the parent collaboration pivotal in delivering home programs.
By creating stimulating and rewarding environments outside the occupational therapy clinic, parents can support the occupational therapy intervention and possibly
improve their child’s sensory experiences and quality of life for them and their family (Cohn et al., 2000). When devising a home program, occupational therapists
must look at a child’s occupations, environment, and family. With respect to child
occupations, the goal of occupational therapy is to facilitate the development of
skills a child needs for activities of daily living. For children, play, social interaction,
and development are usually the focus. Because home therapy programs affect daily
family routines and rituals, therapists must emphasize parent involvement and collaboration to facilitate gains of instrumental goals (Segal, 2004).
Genuine partnership with parents for home programs reflects a family-centered
approach to intervention. In contrast to a client-centered approach, a familycentered approach acknowledges the family as the constant in a child’s life and
embraces both the child’s and the family’s needs and priorities in the therapy process (Lawlor & Mattingly, 1998). As such, when practicing from a family-centered
approach, occupational therapists must respect the need for work, play, and rest
for the families involved with the special-needs child. Concurrently, there must be
respect for family occupations, which is crucial to the effectiveness of intervention.
The practice of only providing a written sensory diet or home program without addressing the broader needs or concerns of the parents and the family as a whole is
inadequate for an effective home program (Segal & Beyer, 2006).
Family-centered programs must also take into consideration the family’s economic circumstances. Currently, more individuals are experiencing economic hardship. While clinic-based services are important to parents, cost is a major concern
for families of children with ASD (Shimabukuro et al., 2008). The out-of-pocket
cost of outpatient services can be huge, ranging from four to six times higher than
for those children without ASD (Shimabukuro et al., 2008). Moreover, parents’
concerns about the costs of outpatient services may affect overall reimbursement
for occupational therapy services, since parents may cancel appointments, request
to attend less frequently, or simply stop using occupational therapy services. Most
importantly, poor attendance may lead to difficulty in intervention planning for goal
attainment, resulting in decreased follow-through on the home therapy programs.
Technology now exists that may allow more convenient ways to partner with
parents (Klein, 2002). Parent collaboration sessions can occur in the clinic, but
other options also exist, such as virtual participation using webcams. The use of
virtual collaboration allows occupational therapists to develop another method
of partnering with families. Virtual collaboration may also improve participation in therapy while reducing the costs incurred by families. For example, travel
may affect attendance. Parents who may not be able to travel for occupational
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therapy may be able to use technology to continue or increase therapy intensity by eliminating or decreasing geographic and temporal constraints (Chiu &
Henderson, 2005; Kairy, Lehoux, Vincent, & Visintin, 2009). And, while the
cost of accessing the Internet must be taken into account, other costs to parents such as transportation and childcare for other children (if applicable) are
eliminated. As far as costs to the partnering occupational therapist, telerehabilitation still involves the cost of the therapist’s time but may not require an
office or clinic space for services. Thus, telerehabilitation has some important
advantages and should be evaluated as a possible means for improving carryover of occupational therapy home programs. Telerehabilitation has been successfully used with videoconferencing, via a high-speed Internet connection, to
perform consultations to observe specific areas of play performance in children
with special needs (Wakeford, 2002). Additionally, telerehabilitation has also been
used as a supportive service for parents of children with cancer and has been
shown to decrease parental levels of stress, anxiety, and depression (Bragadottir,
2008). Moreover, telerehabilitation may help facilitate quality of life by enabling service provision within a child’s natural environments (McCue, Fairman, &
Pramuka, 2010).
In response to preliminary studies that showed benefits of telerehabilitation, an
Internet-based Service Development (IBSD) model was established to form guidelines for occupational therapy practice with telerehabilitation for service delivery
(Chiu & Henderson, 2005). The IBSD model has provided a guideline as well as displayed its use for Internet-based occupational therapy services to caregivers. Based
on website and caregiver survey, seven guidelines were established for Internetbased occupational therapy services. When used in practice, caregivers showed support for online therapy services and were less likely to seek face-to-face services.
The purpose of this paper is to describe a telerehabilitation project used to help
parents improve home programs of occupational therapy strategies designed to improve sensory modulation in their children with ASD. The project explored the use
of telerehabilitation for collaborative occupational therapy sessions. Telerehabilitation was defined in this pilot project as parent–therapist collaboration in the home
therapy program, with the use of Internet-based occupational therapy consultations
through webcams (Chiu & Henderson, 2005).
THEORETICAL FOUNDATION
The theoretical frameworks that guided this project were the parent–therapist collaborative model (Bazyk, 1989) and the IBSD model (Chiu & Henderson, 2005).
Chiu and Henderson’s (2005) The IBSD model is a seven-step comprehensive approach to developing such a program (see Table 1).
All are necessary steps and must be involved in developing the Internet-based
aspect of the pilot project intended (Chiu & Henderson, 2005).
In addition to the IBSD model, a service model for parent involvement is
also necessary to ensure optimal collaboration. Bazyk (1989) developed six guidelines for parent–therapist collaboration that reflect, among other concepts, familycentered care. This model provides an important foundation for the pilot project.
The first guideline, the parent as decision-maker, places the parent in control as a
Family-Centered OT and Telerehabilitation for Children with ASD
301
TABLE 1. Steps for Implementing the IBSD Model
Step
Description of tasks
Do a site survey
Gather needed information such as possible host sites,
target users, and existing Internet-based programs.
Identify the targeted population and intended use of the
website (create a “persona”).
Identify and adhere to professional code of ethics and
standards. This must be followed when developing logins,
passwords, and archived information to ensure the
personal information of the participants is kept
confidential.
Develop a purpose statement to inform users of the intent of
the service.
Outline the delivery services and link to outcome
statements. The developer thus matches intended
services with the expected outcomes and acknowledges
the desired goals and intent of the service.
Ensure that the specific site is user friendly for the
occupational therapist and the users.
Develop the user profile and needs
Follow regulations and legislations
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Define the purpose of the service
Develop a program logic model
Identify website design requirements
decision-maker. The therapist’s role is that of the service provider. The family’s
needs are taken into account when a program is established. The second guideline,
support of parental role development versus the role of parent as therapist, highlights
the concerns of the parent. When parents are placed into the therapist role, they are
taken away from the role as the caregiver. Placing them into the therapist role could
affect the overall parent–child relationship. The therapist needs to take into account
all of the parental roles in occupational role development. The third guideline, collaborative home treatment programs, emphasizes treating the parent as equal to the
therapist. Both the parent and the therapist must collaborate on treatment ideas.
Parental input is necessary due to their knowledge of the child’s daily life and of the
child’s likes and dislikes. The fourth guideline, differences in collaboration with families, acknowledges the differences in families and their needs. The therapist must
assess the parent’s desired level of involvement. Not all parents will desire to play a
major role in treatment. The fifth guideline, options for parents, identifies the need
to provide more than one intervention strategy and plan for the parents. The treatment strategies must have options and be flexible to adjust to the changes in the
parents’ daily lives. The sixth guideline, the child’s needs, specifies that the children
are not seen solely as individuals but within their various family roles. As a family
member, he/she may be the only child or sibling. The other family members must
have love for him/her and a desire to play and interact. Parental acceptance must
be promoted. These guidelines provide a model for developing a parent collaborative program, with the intent to ensure a true collaborative effort and possibly to
enhance carryover (Bazyk, 1989).
The pilot project consisted of the therapists and parents formulating sensory diets collaboratively using Bazyk’s (1989) model. However, this paper’s focus is the
development of the telerehabilitation program using parent–therapist collaboration. All sessions for the pilot project were conducted in the clinic setting, where
sensory integration therapy was the primary form of intervention, followed by
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supplemental telerehabilitation sessions. The pilot project was designed to provide
collaboratively developed telerehabilitation sessions as an additional strategy to
improve carryover of intervention provided for children with ASD.
METHOD
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Participants
During the program development phase, six families with computers and Internet
service were recruited for the study, with four families agreeing to participation in
the study. The families were receiving occupational therapy services through the
author’s private pediatric practice in the greater New York City area. All families
recruited had children with ASD receiving at least one clinic session per week. The
children with ASD were between five and 12 years of age. All of the children were
males, living with both parents, with the exception of one child, who lived in a singleparent home. All four families included at least one sibling.
Procedure
The pilot project consisted of three phases. The phases were program development, contact, and evaluation. The Thomas Jefferson University Institutional Review Board granted approval for this project.
Program development
The two major components of the program development phase included a needs
assessment and development of a website for the contact phase of the project.
Preliminary need assessment surveys of parents and occupational therapists were
developed as a way to evaluate needs for this program. The parent questionnaire
obtained information about parent’s levels of knowledge of their child’s therapy
program, telerehabilitation, and family-centered therapy. Four parents whose
children were already participating in occupational therapy sessions completed
the questionnaire. An occupational therapist who worked at the clinic and six
colleagues of the first author were asked to complete the therapist questionnaire
designed to elicit insight into interest in the parent–therapist collaboration. In
addition to these surveys, websites for telerehabilitation services were identified
and reviewed via Internet search engines. The first author created a family
schedule and a sensory diet template based on the initial surveys of the parents
and therapists (see Figure 1).
An important aspect of the program development phase involved the development of a parent-friendly website, based on the IBSD model. The website was established for parents and therapists to collaborate using webcams. Based on the
IBSD model, a profile and intended service were clearly identified. Previously performed website surveys and a program logic model were reviewed by the occupational therapist and a web developer. Information from the website surveys was
used for the website design based on the program logic model.
The website, www.piecingthepuzzletogether.com, was established. The web developer designed a webpage and a link to WebEx. The WebEx site included the
capability for Internet conferencing through webcams. This allowed for privacy
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Family-Centered OT and Telerehabilitation for Children with ASD
303
FIGURE 1. Sensory diet template completed by parent(s).
limiting access to the therapist and the parent. The website was reviewed, and
changes were made based on feedback from parents and professional colleagues.
Parents were asked to arrange for their own webcams. If they were not able to
obtain one, the occupational therapist provided one for their use during the pilot
project. Webcam compatibility was established to ensure use through the website.
Contact phase
The contact phase consisted of two stages: clinic-based occupational therapy and
telerehabilitation. The clinic-based occupational therapy occurred once a week for
four weeks and involved 30-minute sessions with the four parents and children
from the program development phase. The needs assessment and evaluation of the
child’s sensory processing were performed during the sessions. The Sensory Processing Measure (SPM) Home Form was selected as an assessment tool to formulate a baseline for the participating children. The SPM is a valid tool for assessing a
child’s sensory processing skills in the home environment and has yielded reliable
data in this population (Parham & Ecker, 2007). Norm-referenced standard scores
are provided for five sensory areas, praxis, and social participation. The child’s performance on the SPM Home Form was assessed at the start and end of the contact
phase. The sections assessed were social participation, vision, hearing, touch, taste
and smell, body awareness, balance and motion, and planning and ideas. A fourpoint Likert scale provided scores ranging from “never” to “always,” relating to
a particular action performed by the child. Total scores revealed three categories:
typical, some problems, and definite dysfunction.
Weekly 30-minute in-person sessions followed in the clinic for four weeks. They
included parent education, involving review of sensory integration and techniques.
Techniques were demonstrated by the therapist and also shown through video clips.
In addition, weekly family schedules were established within the developed template. The sensory diet activities were identified through collaboration with the parents. Parents’ perceptions of activities seen as important and feasible were included.
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The activities identified by the sensory diets were strategically placed throughout
the developed family schedules and within the “Activities” section of the sensory
diet template. To obtain data on follow-through of sensory diets, the families kept
track of their implementation and documented application of the home therapy
program by completing the blank areas of the sensory diet templates. The completed sensory diet templates were reviewed during the weekly collaboration sessions.
The second stage of the contact phase was the use of telerehabilitation. Weekly
consultations with the parents occurred through the website via webcams. Over a
six-week period, parents and the occupational therapist meet online for collaboration sessions. Four 30-minute sessions were scheduled with each family. Sessions
involved review of the weekly schedule and the sensory diet template, and discussions of parent challenges and concerns related to the home therapy program.
Observations of techniques performed also occurred through parent and therapist
demonstration via webcams. In addition, video clips were used for parent review of
techniques. With parent permission, sessions were archived for therapist review.
Evaluation phase
The last phase of the pilot project was the evaluation phase. Challenges and successes in using the supplementary telerehabilitation program to improve carryover
of the prescribed sensory diets were identified through review of sensory diets and
archived sessions. Challenges were defined as activities with poor follow-through,
activities causing stress, and activities resulting in poor response of the child.
Successes were identified as activities with appropriate follow-through, activities
resulting in positive response of the child, and activities enjoyed by the parents.
Additionally, program assessment included parents’ completion of sensory diet
templates, their level of participation in online sessions, and their overall feelings
about the program expressed during an interview at the time of program completion. Eight of the archived webcam sessions were summarized using content
analysis (Weber, 1990) to determine primary topics discussed and specific activities
performed. The archived webcam sessions included video and audio recordings
of each session, from which activities were observed and categorized. Archives
also automatically recorded the start and stop times of each session and the length
of each session. Reassessment of the participating children was performed upon
completion of the contact phase (after telerehabilitation) using the SPM Home
Form and was compared with the initial SPM scores obtained at the start of the
pilot project. The responses of children and parents to the telerehabilitation were
recorded in the typical narrative format that is used at the first author’s clinic.
RESULTS
A summary of the eight webcam sessions is shown in Table 2. All webcam sessions included review of specific techniques in the home program and discussion
of the child’s response to the home program. Specific techniques were reviewed
by the therapist, who observed the parent or child performing the technique and
provided feedback (by the therapist showing a webvideo of correct performance
or himself/herself demonstrating the proper technique). In the majority (5/8) of
Family-Centered OT and Telerehabilitation for Children with ASD
305
TABLE 2. Summary of Telerehabilitation Sessions
Child/
Session length
session
(minutes)
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A1
B1
C1
A2
B2
C2
A1
B2
21
21
27
25
13
27
24
26
Average = 23
minutes
Review home Parent–-child
program
demonstration
X
X
X
X
X
X
X
X
Therapist
demonstration
Video
demonstration
Explain
rationale
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
the sessions, parents asked the therapist for specific guidance about correct performance of the home program. Areas in which parents requested clarification included ways to properly position the child on a therapy ball, how much pressure
to apply during joint compression, how frequently to perform sensory techniques,
and how insistently they should try to engage the child’s participation in the home
program. Education of the parent about the reasoning behind specific components
of the home program occurred in five of the eight sessions.
Parent Response to the Telerehabilitation Program
Parents’ participation and response to the pilot project were gathered through attendance records, post-program interviews, and comments made during the webcam sessions, which were recorded in narrative format on therapy progress notes.
Three of the four parents participated in all four telerehabilitation sessions. Two
parents also reported positive effects of the program on their child’s participation
with peers or siblings. For example, one parent noted that her child was calm and
engaged while doing the prescribed swing activity, stating, “he loves the swing! His
sister often pushes him while he is on it, they are so close.” Another parent reported,
“It was so wonderful to see (her child) being able to do things like the other children (obstacle course with friend),” noting that her child’s motor planning abilities
had improved. A third parent verbalized “improvements in his (child’s) attention
and focus, noting that (the child) is more available to learn following the sensory
diet.” Overall, therapy progress notes indicated that parent–therapist collaboration,
parental stress, parental feelings of competence, and family interaction improved
for most of the participants.
Therapy Goals
Summaries of progress reported in therapy documentation includes both clinical
outcomes (see Table 3) and process outcomes (see Table 4). Figure 2 provides a
visual image of each child’s initial and post-program SPM scores. It provides a concise image of each child’s specific changes in the various areas assessed. With the
exception of Child D, total SPM scores remained stable or improved after the contact phase.
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Gibbs and Toth-Cohen
Table 3. Clinical Outcomes Based on Parent and Therapist Report (from Therapy
Progress Notes)
Clinical
outcomes
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Fine motor
skills
Self-help
skills
Selfstimulatory
behaviors
Child A
Child B
Child C
• Good
• Improved ability to • Slight
improvement
improvement
manipulate
observed with the
observed by
fasteners.
child’s grasp,
therapist with
• Improved
translation, and
child’s ability to
translation, grasp,
graphomotor
perform
and graphomotor
skills.
appropriate grasp
skills
patterns, such as • Home-based
• Improvement in
activities involving
pincer and tripod
handwriting skills
fine motor
with graphomotor
(parent report)
exercises
tasks; required
increased (parent
less physical and
report)
verbal cueing
• No other
improvement was
reported
• Improvement
•Slight improvement • No significant
observed by
improvement was
in ability to don
therapist in child’s
observed by
socks and shoes
ability to
therapist
(initially required
manipulate
moderate physical
fasteners and tie
assistance),
his/her shoes
required verbal
cueing at the end
of the pilot project
as observed by
therapist
• Not applicable
•Hand flapping was • Parent reported
significant
evident at the start
decrease in
of the pilot project
self-stimulating
and significantly
behaviors
decreased at the
end as per parent • Child was able to
seek out more
report
appropriate
activities, based
on therapist’s
recommendations
Child D
• No significant
improvement
observed by
therapist
•Home-based
activities involving
fine motor
exercises
increased (parent
report)
• No significant
improvement
observed by
therapist
• Not applicable
DISCUSSION
This pilot project demonstrated the potential for using telerehabilitation as a tool to
provide collaborative occupational therapy in order to improve carryover of home
programs for children with ASD. The four families with children who have ASD
appeared to be successful in using telerehabilitation to collaborate with occupational therapy in their child’s home program, to gain clarity on specific techniques
they were asked to perform with their child, and to receive additional explanation
from the occupational therapist on the reasoning behind the home program. Furthermore, telerehabilitation provided the therapist the opportunity to observe the
parent–child interaction in the home environment and to provide meaningful and
307
Parent satisfaction
Family interaction
• Therapist observed good
improvement in parent’s ability
to deliver recommended
activities
• Parent reported feeling more
competent
• Parent reported increased
• Parent reported increased
interaction between the child
interaction with the family; all
and his sibling
involved in webcam sessions
• Parent noted child’s participation • Due to decreased stress, the
parent reported having more
in recommended activities with
time for herself and the other
sibling
family members
• Parent reported satisfaction that • Parent reported satisfaction with
the increased interaction with the
interaction with therapist
therapist
increased, but preferred
• Parent was able to discuss
face-to-face sessions as she
concerns without feeling as if
believed her child was distracted
she were interrupting his session
by the webcam
time
• Parent reported she was
extremely happy with the
changes seen at home
Parental competence
Parent reported significant
reduction in stress as shown by:
• Decreased stress in relation to
providing meaningful activities
for her child at home
• Better understanding of how to
meet her child’s sensory needs
• Therapist observed that parent
was calmer and better able to
redirect her son appropriately
• Therapist observed good
improvement in parent’s ability to
deliver recommended activities
• Parent reported feeling more
competent
Child B
No significant changes
Child A
Parental stress
Parent and family
outcomes
Child D
(Continued on next page)
• Therapist observed good
• Therapist observed fair
improvement in parent’s ability to
improvement in parent’s ability
deliver the therapist
to deliver recommended
recommended activities
activities
• Parent reported feeling more
• Parent did not report feeling
competent
more competent
• Parent did not report any
• Parent did not report changes
changes
in this area and had previously
reported poor sibling
interaction
• Webcam sessions showed
sibling assisting brother with
ASD in recommended activities
• Parent reported satisfaction with • Parent reported satisfaction
the increased interaction with the
with the increased interaction
therapist
with the therapist
• Parent stated that she was
• Parent stated that the webcam
pleased with immediate
sessions were no more helpful
feedback during the activities
than clinic based sessions
and appreciated knowing
whether she was doing the
exercises correctly
• Parent did not report any
• Parent did not report any
decrease in stress
decrease in stress
• Parent expressed difficulty
• Parent expressed difficulty
getting the child to perform the
getting the child to perform the
recommended exercises at
recommended exercises at home
home
• During webcam sessions, parent
reported improvement in son’s
behavior and participation with
therapist present
Child C
Table 4. Process Outcomes Based on Parent and Therapist Report (from Therapy Progress Notes)
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308
Child B
• Increased satisfaction with family • Satisfaction noted with the
increased communication with
interaction, with opportunity for
the parents; however therapist
therapist to meet father and
would have preferred more
sister for the first time
consistency with sessions
• Increased ability to view child in
the natural environment
• Increased communication with
child’s parents
Child A
Adherence to sensory diet • Parent reported child’s increased • Parent did not report optimal
participation by child in
participation in sensory-based
sensory-based activities in
activities to therapist
weekly reports but increased
• Parent’s inquiries about
participation was noted by
therapeutic techniques
therapist
increased
• Parent’s inquiries about
therapeutic techniques
increased
•Parent provided video of child
participating in home-based
activities successfully
Therapist satisfaction
Parent and family
outcomes
Child D
• Satisfaction noted with the
increased communication with
the parent
• Significant difficulty with and
lack of understanding of the
suggested home-based
activities was observed;
therefore, the therapist was
able to provide more feedback
to the parent during webcam
and clinic-based sessions
• Parent did not report optimal
participation by child in
sensory-based activities in
weekly reports but increased
participation was noted by
therapist
• Parent’s inquiries about
therapeutic techniques
increased
Child C
• Parent stated that she enjoyed
having the additional time
following clinic-based sessions
• Therapist noted that parent’s
knowledge of SI improved
following the project
• Parent reported that she wanted
to continue the online sessions
in conjunction with the
clinic-based sessions
• Satisfaction noted with the
increased communication with
the parent
• Difficulty with and lack of
understanding of the suggested
home-based activities was
observed; therefore, the
therapist was able to provide
more feedback to the parent
during webcam and clinic-based
sessions
• Parent did not report optimal
participation by child in
sensory-based activities in
weekly reports but increased
participation was noted by
therapist
• Parent’s inquiries about
therapeutic techniques
increased
Table 4. Process Outcomes Based on Parent and Therapist Report (from Therapy Progress Notes) (Continued.)
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309
Therapist–
parent consultation post
study (6 months post)
Consultation time
• Consultation time significantly
increased as the
parent–therapist consultation
had been limited to less than 15
minutes in each clinic-based
session
• Consultation occurred
throughout the week, at least
twice weekly, during the study.
• Both e-mail and telephone
communication increased
• Consultation significantly
decreased
• While e-mail communication
occurred periodically, the parent,
along with the child, no longer
attended the sessions due to
scheduling issues;
communication occurred
through the grandparent
• Consultation time significantly
• Consultation time significantly
increased as the
increased as the
parent–therapist consultation
parent–therapist consultation
had been limited to less than
had been limited to less than 15
15 minutes in each
minutes in each clinic-based
clinic-based session
session
• Consultation occurred at least
• Consultation occurred at least
once weekly, during the study.
once weekly, during the study.
• Both e-mail and telephone
• Both e-mail and telephone
communication increased
communication increased
• Consultation did not decrease
• Consultation significantly
• Consultation significantly
but occurred primarily face to
decreased.
decreased
face
• E-mail communication no longer • E-mail and phone
• Parent and therapist continued
communication no longer
occurred from the parent.
to collaborate before and after
occurred from the parent, but
clinic-based sessions
consultation continued following
clinic-based sessions
• Consultation time significantly
increased as the
parent–therapist consultation
had been limited to < 15
minutes in each clinic-based
session
• Consultation occurred at least
once weekly, during the study.
• Both e-mail and telephone
communication increased
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Gibbs and Toth-Cohen
FIGURE 2. SPM subscores on initial and follow-up assessment. SOC: social, VIS: vision,
HEA: hearing, TOU, touch, BOD: body awareness, BAL: balance and motion, PLA: planning
and ideas, TOT: total raw score. Sensory area ranges: typical: 40–59, some problem: 60–69,
definite dysfunction: 70–80. Total score ranges: typical: 56–78, some problems: 79–118,
definite dysfunction: 119–224.
real-time feedback. The use of telerehabilitation revealed a need for parents to receive continued support. Most telerehabilitation sessions involved parents seeking
feedback on techniques demonstrated during clinic-based sessions and frequently
requesting clarification on the sensory diets. Thus, therapists should not assume
that in-clinic training will automatically result in proper carryover to demonstrate
appropriate techniques and strategies in the natural environment. Thus, it may provide much needed guidance without requiring additional clinic visits. The results of
this pilot project are consistent with other literature, showing that telerehabilitation
can serve as a method to improve continuity (Marshall, Shaw, Honles, & Sparks,
2008).
Three children’s SPM scores either remained stable or improved. This cannot be
attributed to the telerehabilitaton intervention; however, it does provide support
that indicates further research is needed. Two factors may have contributed to the
drop in the fourth child’s scores – specifically, the parent’s initial concern about
using the computer and the family’s hectic schedule may have made it difficult to
follow the sensory diet.
LIMITATIONS
The pilot project included a possible selection bias, since all children were recruited
from the same (the author’s) clinic. They were currently receiving services; hence,
their needs and abilities were already known. Further limitations relate to the time
frame. As revealed in previous literature, research involving families’ daily routines
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Family-Centered OT and Telerehabilitation for Children with ASD
311
and rituals should be performed in a longitudinal design (Segal, 2004). This would
enable researchers to examine the ways in which routines and rituals evolve over
time. Interventions must adjust to changes in the family’s and child’s life to be effective.
Since the pilot project included only four participants and a relatively short period (total of eight weeks), outcomes of the SPM cannot be fully attributed to the
pilot project nor can they be generalized to the larger population of families with
children who have ASD. Moreover, the children’s scores on the SPM Home Form
may not reflect their overall level of sensory processing. Completion of the main
classroom and school environments forms would have provided more information
about the child’s level of sensory processing. The children in this project all attended
school for the majority of the day. Evaluation of their performance should have
included this crucial time frame, because best practice involves the evaluation of
individuals in various natural environments (Miller-Kuhaneck, Henry, Glennon, &
Mu, 2007). Thus, completion of the main classroom and school environments forms
would not only eliminate parental bias, but that doing so might also encourage team
collaboration.
Although improvement as reflected by the SPM was minimal, parents reported
appreciation of the collaboration with the therapist in the telerehabilitation program. Most parents expressed a feeling of being more competent in providing their
child with needed sensory input and activities. In addition, post-program interviews
revealed parents’ belief that the family members were all happier and less stressed
as a result. Their newfound appreciation of a family-centered approach parallels
previous studies. As seen in research performed by Vanleit and Crowe (2002), parents appreciated this approach versus past therapy experiences focusing solely on
their child.
IMPLICATIONS FOR PRACTICE
This pilot project provides support for the use and further need of research in the
use of telerehabilitation in occupational therapy and informs practice in several
areas. First, findings suggest that telerehabilitation may serve as a complementary
method of service delivery for families with children who have ASD to better ensure follow-through and enable parents to clarify how to best apply a collaboratively designed sensory diet to their individual needs and schedules. This is consistent with findings from other studies of home interventions that indicate improved
follow-through of healthcare professionals’ recommendations and satisfaction with
telerehabilitation outcomes by patients/clients and therapists (Kairy et al., 2009).
Follow-through, and patient/client and therapist satisfaction are considered process
outcomes that have received little attention in previous work (Kairy et al., 2009).
Such process outcomes appear to be crucial factors in the successful application of
telerehabilitation for specific populations and may be particularly important when
evaluating the use of home programs for parents and their children with ASD. Although much more systematic evaluation is needed, the telerehabilitation project
described in this paper takes an important step by identifying key process outcomes,
which include adherence to sensory diets, parent and therapist satisfaction, family
interaction, and consultation time.
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Gibbs and Toth-Cohen
Future study of telerehabilitation should also include its use as a supplement to
school-based services for consulting with teachers. The children in the project were
all school aged who spent the majority of time during the day in school. When the
parents completed their weekly schedules, most of the time was left blank, indicating the child was at school. Therefore, the performance of the home therapy
programs was limited to small intervals of time. Thus, extending the application of
telerehabilitation to the school setting may provide further benefit by revealing a
more complete picture of the child’s sensory processing and response to intervention.
Finally, concerns regarding payment need to be acknowledged. Presently, reimbursement for telerehabilitation provided by occupational therapists is very limited
(American Occupational Therapy Association [AOTA], 2010). If insurance companies will not cover telerehabilitation services, will parents be willing to participate?
Furthermore, therapists must be aware of ethical issues in telerehabilitation, such as
applicable licensure laws, standards of practice, and confidentiality (AOTA, 2010).
IMPLICATIONS FOR PROFESSION
The AOTA’s Centennial Vision indicates a vision for a “globally connected” field
(AOTA, 2009). Klein (2002) discussed potential benefits of the Internet for the
field of occupational therapy, such as the use of webcams to allow therapists to
reach a more broad geographical range. Those who may not have been able to receive treatment, such as families living in rural areas, can receive direct consultation
with a qualified therapist. Telerehabilitation may also promote opportunities for
occupational therapy to provide services for those in need in other countries, consistent with initiatives in other disciplines such as speech and language pathology
(Mashima & Doarn, 2008).
When evaluating carryover of improved sensory modulation and parent involvement in therapy interventions, several factors must be addressed. Skill, knowledge,
daily activities, challenges, and support systems all must be considered when determining the feasibility of telerehabilitation. However, the benefits may be substantial. Telerehabilitation focused on parent collaboration may enable occupational
therapy services to become more convenient and accessible to many. Although
clinic-based occupational therapy services are frequently sought by parents of children with ASD, telerehabilitation may provide an alternate method of service delivery that assists parents with carrying out home therapy programs and may help
to improve the child’s sensory modulation in natural environments. In addition to
consulting on the home therapy program, telerehabilitation may assist in providing
parent education. Despite the availability of parent support groups and sensorybased play groups, parents may be unaware of specific information about sensory
integration and the reasoning behind specific techniques. Thus, parents question the
meaning of sensory integration or may avoid or adapt therapist-suggested sensorybased activities when the child responds negatively. As a result, sensory diets may
not be performed appropriately or may be avoided (Dickie, Baranek, Schultz,
Watson, & McComish, 2009). Occupational therapy has become a familiar service
to many parents seeking treatment for their children with ASD (Dickie et al., 2009).
Through telerehabilitation, parents can be further educated about the background
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Family-Centered OT and Telerehabilitation for Children with ASD
313
and evidence in support of occupational therapy for children with ASD. If occupational therapists can help parents gain a better understanding of the techniques
they are expected to use, home programs may be implemented more consistently
and increased carryover will occur within the child’s natural environments. This
in turn may then lead to increased recognition of the value of occupational therapy for its contributions to these children (Segal & Beyer, 2006). Thus, web-based
education for parents might be utilized as a lecture and facilitate conferencing or
discussion.
Finally, peer collaboration plays a major role in the field of occupational therapy.
On many occasions, individual scheduling needs and lack of time may not allow
for direct consultation. Therapists may then have to rely upon documentation and
verbal narratives to get assistance from their peers. However, if peers can join an
online session or view an archived webcam session, the consultation may be more
beneficial to all parties (Lysaght & Bent, 2005).
In summary, telerehabilitation may provide much needed support for parents
and facilitate improved practice of occupational therapy. In order to use telerehabilitation wisely, occupational therapists must gain further knowledge and skills in
program development of Internet-based service delivery models and uphold state
guidelines and ethical standards (AOTA, 2010). The use of telerehabilitation in
occupational therapy may help the profession to expand services to various geographical areas and assist occupational therapists in providing services to caregivers, teachers, and other health professionals. Expanded use and additional research demonstrating efficacy for specific uses may make telerehabilitation services
for occupational therapy a demonstrated method of care, similar to its integration
into other fields such as psychology and speech and language pathology (Chiu &
Henderson, 2005). Since it remains unclear how telerehabilitation may affect longterm carryover of home therapy programs, direct patient interaction, use with other
diagnoses, and long-term costs require further exploration and research. However,
the potential for the application of telerehabilitation shows promise for moving occupational therapy forward to meet the needs of clients in all areas of practice.
ACKNOWLEDGMENTS
The authors thank the children and parents who participated in the pilot project.
The authors also thank Dr M.J. Mulcahey, PhD, OTR/L, and Dr. Aisha Lord Ryan,
MSPT, DPT, for their review of a previous version of the manuscript.
Declaration of interest: The authors report no conflict of interest. The authors
alone are responsible for the content and writing of this paper.
ABOUT THE AUTHORS
Varleisha Gibbs, OTD, OTR/L, is President, Universal Progressive Therapy, Inc.,
Nutley, New Jersey, USA. Susan Toth-Cohen, PhD, OTR/L, is Professor and Director, Occupational Therapy Doctoral Program at the Jefferson School of Health
Professions, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
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Gibbs and Toth-Cohen
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Occupational Therapy In Health Care, 26(4):257–269, 2012
C 2012 by Informa Healthcare USA, Inc.
Available online at http://informahealthcare.com/othc
DOI: 10.3109/07380577.2012.720052
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Considering College?: Adolescents With Autism
and Learning Disorders Participate
in An On-Campus Service-Learning Program
Jennifer Gardner, OTD, OTR1 , Claire M. Mulry, MSOT, OTR, CAPS1 ,
& Sandee Chalik, MS, OTR2
1
Department of Occupational Therapy, Kean University, Union, New Jersey, USA,
2
The Newgrange School, Hamilton, New Jersey, USA
ABSTRACT. This paper presents an example of successful collaboration between an
entry-level occupational therapy program and school-based setting that resulted in innovative programming for high school students living with autism and learning disorders. The two-day programming provided opportunity for high school students (n = 30)
to practice a variety of life skills on the university campus as a way to support transition
to secondary education and learning in the natural environment. Occupational therapy
master’s students developed and implemented the programming as a service-learning
experience. Key factors for successful collaboration and outcomes, as well as considerations for future programming and research, are outlined.
KEYWORDS.
Autism, secondary education, service learning
This paper highlights a successful, innovative program that was initiated by a
school-based occupational therapy practitioner to meet the needs of high school
students living with autism and learning disorders. The programming provided
opportunity for the high school students to experience college life, while providing
a successful service-learning opportunity for occupational therapy master’s students at Kean University, New Jersey. The presentation includes (1) the literature
identifying the need for occupational practitioners to address the transition from
high school to college for autism and learning disorders, (2) the motivation for
initiating the collaboration with the university faculty members and the steps
to sustain the collaboration between the school-based setting and entry-level
program, (3) how the programming was constructed to fit within the occupational
therapy program, and (4) a description of how the innovative programming was
structured and implemented. Limitations of the collaboration are briefly presented
Address correspondence to: Dr Jennifer Gardner, OTD, OTR, Department of Occupational Therapy, Kean
University, 1000 Morris Avenue, East Campus 226, NJ 07083, USA (E-mail: [email protected]).
(Received 13 April 2012; accepted 7 August 2012)
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as well as a description of the benefits for all the stakeholders involved and future
considerations for programming and research.
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DEVELOPING INNOVATIVE PROGRAMMING OPPORTUNITIES
Occupational therapy practitioners work with people of all ages, ethnicities, race,
diagnoses, and functional impairments across a variety of settings (American
Occupational Therapy Association (AOTA), 2008, 2011a). The largest number of
occupational therapy practitioners (24.7%) work in schools and early intervention
(American Occupational Therapy Association, 2009a). Occupational therapy
practitioners working in school-based settings work with students with a variety of
physical, emotional, and cognitive disabilities, including Autism Spectrum Disorders, Nonverbal Learning Disorders, and Learning Disorders (Case-Smith, 2001).
The goal of treatment in the school-based setting is to promote successful participation in the area of education, including academic (math, reading, working on a
degree), non-academic (recess, lunch, getting from class to class), extracurricular
(sports, band, cheerleading, dances), and prevocational and vocational activities
(Knippenberg & Hanft, 2004). The school-based occupational therapy practitioner
working with high school students may focus treatment on the transition to higher
education as a way to support future vocational goals. Students with learning and
developmental disorders may have more difficulty with this transition, particularly
in the areas of socialization, communication, independent living skills, academic
functioning, and self-advocacy (Adreon & Durocher, 2007). Research indicates
that students with special needs are able to demonstrate success with the help of
proper support systems, accommodations, and preparation (VanBergeijk, Klin, &
Volkmar, 2008). Young adult success is frequently characterized by educational attainment (high-school completion, post-secondary degree, or occupational certification), constructive engagement in 35 hr per week in school, employment or homemaking, and civic engagement in volunteer work, political participation, or charitable giving. Physical health, life skills, psychological and emotional well-being,
ethical behavior, and healthy family and social relationships are also the markers of
young adult success (Bill & Melinda Gates Foundation, 2004; Cronin & Mandich,
2005).
Approximately one in 110 children in the United States lives with an autism spectrum disorder (Centers for Disease Control and Prevention, 2011). Autism spectrum disorders are a group of developmental disorders that significantly impact
a person’s socialization, communication, and behavior (Centers for Disease Control and Prevention, 2011). The three most commonly recognized disorders under
this umbrella categorization of autism spectrum disorder are autistic disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified
(Centers for Disease Control and Prevention, 2011).
Autistic disorder is characterized by qualitative impairment in social interaction
(i.e., lack of spontaneous seeking to share enjoyment), qualitative impairment
in communication (i.e., delay in, or total lack of, the development of spoken
language), restricted repetitive and stereotyped patterns of behavior, interest,
and activities (American Psychiatric Association, 2000). Asperger’s disorder is
characterized by similar qualitative impairment in social interaction and restricted
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259
repetitive and stereotyped patterns of behavior, but with no clinically significant
delay in language, cognitive development, development of age appropriate selfhelp skills, adaptive behavior, and curiosity about the environment (American
Psychiatric Association, 2000).
Learning disorders (also known as academic skills disorders and learning disabilities) include the following conditions: reading disorder, mathematics disorder,
and disorder of the written expression (American Psychiatric Association, 2000).
Research shows that 8 to 10% of American children under 18 years of age have
some type of learning disability (National Institute of Neurological Disorders and
Stroke, 2011). Nonverbal learning disorder is characterized by deficits in social
perception, including identifying facial expressions and gestures, understanding
social cues, and making inferences based on emotional factors (Klin, Volkmar,
Sparrow, Cicchetti, & Rourke, 1995). These deficits are similar in students with
Asperger’s disorder who experience difficulties in social interaction, which are frequently related to misperceptions of social intent, reciprocal communication, and
misunderstandings (Klin et al., 1995; Semrud-Clikeman, Walkowiak, Wilkinson, &
Minne, 2010). These disorders affect the way the brain processes information for
learning and have a direct impact on students’ ability to successfully participate
in academic performance, social participation, transition to work, and secondary
education.
Students with autism spectrum disorders and nonverbal learning disorders face
distinct challenges to achieving young adult success (Adreon & Durocher, 2007).
Specifically, post-secondary and employment opportunities for these students
have been limited (Hendricks & Wehman, 2009). Most of these students are determined eligible to receive services under Individual with Disabilities Education
Improvement Act (IDEA) or 504 plans (US Department of Education, 2012; US
Department of Labor, 2012). Transition services are mandated to be included
in individualized education plans (IEP), starting when a student is 14 years old.
Barriers to effective transition plans for students with autism spectrum or nonverbal learning disorders include executive functioning deficits, such as organization,
time management, self-monitoring, planning, problem-solving, and social skills.
Specifically, areas to be considered in transition plans for students with autism
spectrum and nonverbal learning disorders include deciding the type and size of
college, living arrangements and independent living skills, disclosure of disability,
identifying appropriate academic and social supports and accommodations, identifying healthy leisure activities, and identifying strategies to assist with adjusting
to the environment (Adreon & Durocher, 2007).
According to the literature, learning can be enhanced by providing instruction
in natural and community-based environments. However, despite legal mandates
to ensure that schools plan for transition (IDEA), transition planning and implementation is falling short of the intended results for students with learning disorders, including autism spectrum and nonverbal learning disorders (Eaves & Ho,
2007; Hendricks & Wehman, 2009). Innovative programming is needed to bridge
that gap between intended results and reality. School-based occupational therapy
practitioners, entry-level occupational therapy programs, community partners, and
other stakeholders can seize this opportunity to develop these innovative programs
to meet this societal need.
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PRACTITIONER PERSPECTIVE
Professional development is an essential component of occupational therapy practice. In the profession of occupational therapy, it is expected that practitioners
stay current with evidence-based research in order to embed that research into
their practice in keeping with the AOTA’s centennial vision (Christiansen, 2004;
Parkinson, Lowe, & Keys, 2010; Townsend, Sheffield, Stadnyk, & Beagan, 2006).
There are many local, state, and national courses and/or workshops available to
occupational therapy practitioners to expand their knowledge and practice. However, practitioners often have difficulty finding opportunities for professional development when their goals include contributing to the evidence base of the profession without enrolling in post-professional academic coursework. The occupational
therapy literature contains numerous examples of collaboration between academia
and practice that is initiated from academic programs (Bazyk, Glorioso, Gordon,
Haines, & Peraciante, 2010; Lukasiewicz, 2008; Raiz, 2007; Schindler, 2011; Wall
et al., 2008). However, there is a dearth of evidence discussing collaboration between a practitioner and university faculty member, of which is initiated and sustained by the practitioner (Forsyth, Melton, & Summerfield Mann, 2005; Kielhofner, 2005).
School-based practitioners can contribute to the evidence base of occupational
therapy by developing innovative treatments based on evidence, writing articles, becoming fieldwork educators, and attending and/or presenting workshops; however,
these activities present significant challenges in practical settings (Forsyth et al.,
2005). They may also seek to expand their practice by collaborating with university faculty members to develop innovative programs to benefit their students and
school communities. An example of how a practitioner can fulfill this role occurred
when an occupational therapy practitioner collaborated with teachers and an occupational therapy student to expand intervention and create a method of data
collection and analysis to support the validity of the high school’s Nonverbal Learning Disability program. Subsequently, the occupational therapy practitioner invited
the coordinator of this program to co-present a poster at the AOTA Conference in
Orlando, 2010. The presentation helped to provide an example of interdisciplinary
collaboration to the occupational therapy community.
Barriers to participating in research and other academic pursuits include time,
funding, and opportunity (Karlson & Tornquist, 2007; Kielhofner, 2005). The occupational therapy practitioner overcame these barriers by networking with fellow
clinicians and university faculty members at the AOTA National Conference. This
networking resulted in collaboration that created innovative programming while
facilitating the transition goals of students with unmet needs.
UNIVERSITY PERSPECTIVE
The definition of “collaborate” is “to work together with a sharing of mutual
thoughts and ideas” (American Occupational Therapy Association, 2009b, p. 47).
The initial conversation between the occupational therapy practitioner and the university faculty members from a local university at the national conference afforded
the opportunity for collaboration to occur between the school-based setting and
occupational therapy program. The two parties initially participated in discussion
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261
and together created programming that met the needs of the stakeholders (high
school students living with autism and learning disorders), which resulted in the
dissemination of evidence-based practice.
A multitude of factors contributed to creating a strong foundation for the
collaboration between the school-based practice setting and occupational therapy
program for the success of the program. First, the occupational therapy practitioner initiated collaboration, which helped to ensure continued motivation
and execution of the program. Second, Kean University’s mission challenges its
faculty members to “prepare students to think critically, creatively, and globally;
to adapt to changing social, economic, and technological environments; and to
serve as active and contributing members of their communities” (Kean University,
2012). In addition, the Accreditation Council for Occupational Therapy Education (ACOTE) (Accreditation Council for Occupational Therapy Education of
the American Occupational Therapy Association, 2011) articulates curriculum
standards that require occupational therapy programs to prepare occupational
therapy providers to meet society’s occupational needs. One of the current
standards charges occupational therapy programs to “apply the principles of the
teaching–learning process using educational methods to design experiences to
address the needs of the client, family, significant others, colleagues, other health
providers, and the public” (Accreditation Council for Occupational Therapy
Education of the American Occupational Therapy Association, 2011, p. 25).
Using the University mission and ACOTE standards for support of the collaboration, the Department of Occupational Therapy at Kean University has a course
titled, Service learning, which provides the graduate students opportunity to service the community (i.e., high school students with autism and learning disorders)
while meeting their academic objectives. Service learning is similar to volunteerism
in that it serves a community need; however, service learning also meets an academic need (Flecky & Gitlow, 2011). After learning how to facilitate groups in the
first semester of school, the occupational therapy master’s students then practice
these skills in the second semester while working with clients within the local
community.
A common barrier to the development, and utilization of, evidence-based practice is the mismatch between the university faculty member’s identification of community needs and the occupational therapy practitioner’s identification of clients’
needs. However, using a service-learning model is a natural fit for collaboration
between educational systems and practice settings to help overcome this barrier.
In fact, the literature highlights the benefits of service learning within healthcare
professions, including occupational therapy. Brandon and All (2010) share how a
curriculum based on social constructivism and collaboration increased teaching effectiveness while helping student nurses increase their speed and comfort in analyzing evidence and using evidence-based practice. For occupational therapy, Precin’s
(2009) aggregate fieldwork model illustrates how service learning can meet the rigorous academic standards. In this case, service learning helped to develop a reciprocal process that allowed the two parties to enter each other’s realities. The occupational therapy practitioner helped to identify a community need and sought
the assistance of the university faculty members, which in essence created a clinical
question and grounded the university in reality-based care, and develop a program
to fulfill an unmet societal need (Ho et al., 2008).
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PARTICIPANT AND PROGRAM DESCRIPTION
The Newgrange School, located in Hamilton, New Jersey, is a New Jersey Department of Education-approved school for children living with disabilities (Newgrange
School, 2012). The school educates students with language-based and nonverbal
disabilities who are aged between 7 and 21 years. The school prides itself in a low
student to staff ratio, innovative educational programs and strategies, and experiences to support attainment of academic and life skills. In order to meet curriculum standards, the high school students often participate in various activities,
community-based instruction (CBI), and work experiences. Visiting Kean University’s campus served as means to meet a standard related to higher education and
the transition process.
The planning of the program began in the fall of 2010. The occupational therapy practitioner received administrative support and collaborated with high school
educators and the Transitions Coordinator to determine those students who would
benefit from the program. Some of the high school students were striving to attend college, while others were still determining if college was a good fit for their
long-term plans. Parents/guardians consented to all school activities outside of the
Newgrange campus at the beginning of the school year. Parents and guardians were
also specifically informed about their student’s visits to Kean University via a letter,
including the purpose and plans for student participation in the transition program.
The letter included when the trip was scheduled, the location, who would be attending, including the staff, and the planned group activities to occur.
In order for the occupational therapy master’s students to become familiar with
the selected high school students who would attend the program, the high school
students created short biographies. The biography included the students’ name, age,
grade, and their plans after graduation. It also included interests as well as any questions they may have had about college life and transition to secondary education.
Some of the high school students’ questions included are as follows: How many
courses do you have to take for the year; how big is the campus; how to get accepted
into Kean University; what is college like; how much homework; how hard is college; and how difficult is it to ask for assistance. The occupational therapy master’s
students were provided the biographies and questions in advance in order to individualize the program as much as possible. In addition, the educators, occupational
therapy practitioner, and other staff members at the high school collaborated to
provide an outline of suggested topics and/or needs of the students. This outline was
forwarded to the university faculty members for preparation and included (but not
limited to) the following: How to apply, how to pick a major, how to make friends,
how to get involved on campus, and how to manage the course load effectively and
in a timely manner.
A total of 30 (five females, 25 males) high school students participated in the transition programming at the university over two days. These students had mixed diagnoses, including autism spectrum disorder, Asperger’s disorder, nonverbal learning
disorder and learning disorders, representing the Newgrange population. Twenty
students were in 9th and 10th grades, exposing them to college life early as a way to
support their anticipated transition. The remaining students in 11th and 12th grades
were those who self-identified their plans to attend college after graduation or those
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who were encouraged to attend by the high school staff as a way to explore all possibilities. Although those in 11th and 12th grades had previously visited vocational
programs and some community college programs, they had not participated in a
transition program specifically designed to target concepts and skills they would
need within their roles as college students.
Service learning occurs in the second semester of the first year of graduate school
in Kean University’s Department of Occupational Therapy. Therefore, the Kean
University’s faculty members planned the two-day program for implementation in
spring of 2011. The high school students would arrive at campus approximately at
9:45 am for a 10:00 am start on both days and leave at approximately 1:00 pm for a
total of 6 hr, 3 hr per day for the various group activities and lunch in the cafeteria.
Regular school hours provided a constraint to the number of hours spent on campus
secondary to travel time to and from campus.
While the university faculty members provided the outline of how the overall
programming would be structured, the occupational therapy master’s students were
responsible for the creation and implementation of the specific learning experiences
and activities to be provided via group intervention. When planning for the programming, the occupational therapy master’s students considered the high school
students’ needs and those identified by staff (i.e., needs assessment) in combination
with the current literature focused on successful transition planning for individuals living with autism and learning disorders. Literature indicates that group interventions are effective for young individuals living with autism spectrum disorders
(Fullerton & Coyne, 1999; Hillier et al., 2007; Hillier, Fish, Cloppert, & Beversdorf,
2007; Winner, 2002). Specifically, Orentlicher and Olson (2010, p. 689) encourage
occupational therapy practitioners to utilize a variety of intervention approaches
when working with this population, including “psychoeducational groups, social
groups, occupation-based groups, and self-help groups.” The programming at Kean
University primarily used psychoeducational (i.e., time management), social (i.e.,
welcome and wrap-up groups) and occupation-based groups (i.e., cafeteria).
The occupational therapy master’s students planned and implemented a welcome group as a way to provide opportunity for introductions, as well as a wrap-up
group, on both days. Orentlicher and Olson (2010, p. 690) highlight that this type
of group provides “an organized, safe, and comfortable environment for practice
and development of social relationships.” The development of socialization skills is
an identified need for this population. In addition to these social groups, the high
school students participated in three psychoeducational classes, which were meant
to teach specific skills related to college life (Orentlicher & Olson, 2010). The three
classes focused on teaching organizational skills, the decision-making process related to choosing the “right” college for one’s needs, and how to access the numerous resources and extracurricular activities available on a college campus.
The literature indicates that those individuals living with autism spectrum disorders have difficulty in executive functioning, which includes organizing materials
(Orentlicher & Olson, 2010). Another activity introduced the high school students
to dormitory living via a tour through freshmen housing. In order to expose the
high school students to the college cafeteria, the high school and occupational therapy master’s students purchased and ate lunch in the campus cafeteria, an example
of an occupation-based group. Those juniors and seniors who were college-bound
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attended two specialized psychoeducational classes, including what to expect as a
college freshman and how to request assistance from a variety of individuals (i.e.,
professors, admission, and registration counselors).
On the first day of programming, each high school student was introduced to
an occupational therapy student to create a mentee–mentor relationship. The pairs
were generated by the university faculty members in advance of the programming
in order to help alleviate anxiety for both students. One role of the mentors was to
provide extra support throughout the day, especially when the students navigated
the campus cafeteria during lunch. The mentor also provided his or her school email address so that the mentee had the option to ask questions in preparation for
the next visit.
OUTCOMES OF THE PROGRAM
One of the outcomes related to the innovative programming relates to the successful utilization of CBI within the high school’s educational curriculum. CBI is defined as the “use of sustained and repeated instructional activities that take place
in various natural community environments outside of the school building in order
to facilitate skill development and generalization” (Baker, 2010, p. 3). The resulting collaboration between The Newgrange School and the Kean University’s Department of Occupational Therapy resulted in a transition program that blended
Newgrange students’ college preparatory goals with CBI within natural environments and contexts. The students were taught life skills within the physical and social environments of a college campus, as well as the cultural and temporal contexts
(American Occupational Therapy Association, 2008).
Other outcomes of the collaboration were positive feedback from the parents
and/or guardians. Most parents expressed satisfaction with their child’s report of
participation in activities and what they learned over the two-day programming.
One mother commented that her daughter “loved everything about the trip, especially the food court.” Another mother commented that her son was “nervous about
going to Kean. However, he thoroughly enjoyed the trip and came back relaxed.”
Another parent commented: “Thank you for giving the students the opportunity to
visit a college.” Parents also commented on the value of their child having a mentor
(e.g., “She thought her mentor was great and enjoyed the one-on-one experience,”
and “His mentor was very nice.”).
An assignment for the high school students was to write journal reflections about
the experiences, what they learned, and the value of the transition workshops. Considering the reality of going to college, student feedback included the following
comments: “I was not always sure that I would be cut out for college, but our trip
[to Kean] showed me that I am,” “Knowing where to get help [in college] is really
valuable to me because it makes me feel safer and more prepared,” “Going to a
large cafeteria actually helped me get over some of my anti-social behavior and I
wound up enjoying myself,” and “I learned that organization is more important than
I thought!” The high school students also indicated the value of the mentors. “When
my mentor was showing me around all the campus, he explained half the things I
need to do to get ready for college,” “[The mentors] were smart, cool, generous,
and they know what they were doing . . . We got a chance to know each other . . . ,”
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and “My mentor was really helpful. She talked to me and guided me when I got lost
in my thoughts.”
The university faculty members elicited feedback from the occupational therapy
master’s students through group processing at the end of each of the two days and
the end of semester course evaluations. Facilitated by the university faculty members, all participants were able to offer feedback. The most frequently offered comment related to the occupational therapy master’s students appreciation for client
contact during their first year of graduate school. For example, one student commented: “It was neat to work with the kids and use the skills that we learned last
semester in activity group process.” Occupational therapy master’s students were
pleased to able to facilitate various socialization opportunities for the high school
students in addition to meeting a need that has been identified in the literature.
Another student was surprised: “I didn’t think that they would be so talkative in
groups and one on one.” The occupational therapy master’s students also indicated
feelings of satisfaction related to how prepared they were in group development
and facilitation, as well as overall enjoyment with working with the high school
students, specifically wishing they had more time with the high school students.
Another positive outcome was the continued collaboration between Kean University’s Department of Occupational Therapy and The Newgrange School through
development of Level I and Level II fieldwork sites. Finally, the occupational therapy master’s students who participated in the 2011 programming developed an advocacy project that addressed the transition needs of students living with autism and
learning disorders the following year in their administration and supervision course.
LIMITATIONS OF PROGRAMMING
Despite the positive feedback and perceived benefits of the programming, there
were limitations associated with the way the programming was structured and analyzed. The first limitation relates to the two-day immersion time at the university.
Since learning is seen to occur in stages over time, occupational therapy practitioners should expose clients to the specific context and activity for long periods of time.
The extended time will ultimately assist with generalization of skills (Vogtle, 2011).
In future programming, occupational therapy practitioners are encouraged to advocate for increased time on campus when collaborating with universities. High
school students are then afforded the opportunity to practice skills repeatedly.
The second limitation relates to the lack of a complete needs assessment at start
of the programming planning and development. A needs assessment is a systematic
set of procedures that helps to identify a need of a particular population, in this
case, youth living with autism and learning disorders (Cole, 2012), and should
include gathering of background data, identification of participants of survey,
distribution of a survey, facilitation of face-to-face and telephone interviews,
identification of key informants and focus groups, utilization of secondary data,
analysis of data, and completion of a participant profile (Cole, 2012). While this collaboration did utilize some of the steps of a needs assessment (e.g., letters written
by the high school students that introduced themselves and asked questions, use
of curriculum standards to guide needs, educator and transition coordinator feedback), future programming should include a more complete process or assessment.
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Occupational therapy master’s students can complete a more in-depth needs assessment improving the program and meeting additional accreditation standards.
Another limitation was the lack of formal assessment of programming efficacy.
This program can be strengthened by adding the use of pre- and post-outcome
measures to determine the benefits for all stakeholders, including the high school
students, occupational therapy master’s students, university faculty members,
occupational therapy practitioner, and parents/guardians. While the high school
elicited feedback from the students and their parents/guardians via written format,
and the university faculty members elicited feedback through group processing,
more in-depth and/or formal assessment did not occur. Occupational therapy
practitioners can request the assistance of the university faculty members, if
desired, in the creation of pre and post measures as a way to capture the benefits.
The university faculty members should utilize its office of research and obtain institutional review board approval to collect data for purposes of formal presentation
and/or publication.
Finally, good communication is critical. As demonstrated, the occupational therapy practitioner and university faculty member dialogue is crucial to achieve the
mutual goals of these stakeholders. Each player must willingly share, cooperate,
and check pride or need to “own” the process, respect, trust, effectively communicate, and navigate through conflict. Threats to an effective collaboration may be
mutual intimidation, differing work issues, slow return on investment, and lack of
team building (McWilliam, Desai, & Grieg, 1997) all of which need to be addressed
proactively to maintain success.
CONCLUSION
This paper offers an example of how a school-based occupational therapy practitioner used a networking opportunity at AOTA’s annual conference with university
faculty members to develop and provide innovative programming that meets a societal need. Occupational therapy practitioners are urged to network with university
faculty members as a way to develop innovative programs to meet the transition
needs of youth living with autism and learning disorders in addition to promoting
professionalism and occupational-based best practice. Successful collaboration between graduate occupational therapy programs and school-based settings could be
a powerful avenue for realization of using occupation-based practice in communitybased program as proposed in AOTA’s Centennial vision.
Declaration of interest: The Newgrange School provided approval for the development and dissemination of the paper, as well as identification of the school’s name in
print. The authors presented a poster presentation at AOTA’s national conference
in 2012. Kean University and The Newgrange School provided travel reimbursement for the 2012 AOTA conference.
ABOUT THE AUTHORS
Dr Jennifer Gardner, OTD, OTR, is affiliated with the Department of Occupational
Therapy, Kean University, Union, New Jersey; Prof. Claire M. Mulry, MSOT, OTR,
CAPS, is affiliated with the Department of Occupational Therapy, Kean University,
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267
Union, New Jersey; and Sandee Chalik, MS, OTR, is affiliated with The Newgrange
School, Hamilton, New Jersey.
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ARTICOLO 1 (SE L'INTERAZIONE SOCIALE Può ESSERE CONSIDERATA UNA
TERAPIA )
sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23615687
Title
Social Participation Among Young Adults with an Autism Spectrum Disorder.
Abstract
Investigating social participation of young adults with an autism spectrum disorder (ASD) is important given the
increasing number of youth aging into young adulthood. Social participation is an indicator of life quality and
overall functioning. Using data from the National Longitudinal Transition Study 2, we examined rates of
participation in social activities among young adults who received special education services for autism (ASD
group), compared to young adults who received special education for intellectual disability, emotional/behavioral
disability, or a learning disability. Young adults with an ASD were significantly more likely to never see friends,
never get called by friends, never be invited to activities, and be socially isolated. Among those with an ASD,
lower conversation ability, lower functional skills, and living with a parent were predictors of less social
participation.
ARTICOLO 2
sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23576962
Title
A review of "music and movement" therapies for children with autism: embodied
interventions for multisystem development.
Abstract
The rising incidence of Autism Spectrum Disorders (ASDs) has led to a surge in the number of children
needing autism interventions. This paper is a call to clinicians to diversify autism interventions and to promote
the use of embodied music-based approaches to facilitate multisystem development. Approximately 12% of
all autism interventions and 45% of all alternative treatment strategies in schools involve music-based activities.
Musical training impacts various forms of development including communication, social-emotional, and motor
development in children with ASDs and other developmental disorders as well as typically developing children.
In this review, we will highlight the multisystem impairments of ASDs, explain why music and movement
therapies are a powerful clinical tool, as well as describe mechanisms and offer evidence in support of music
therapies for children with ASDs. We will support our claims by reviewing results from brain imaging studies
reporting on music therapy effects in children withautism. We will also discuss the critical elements and the
different types of music therapy approaches commonly used in pediatric neurological populations
including autism. We provide strong arguments for the use of music and movement interventions as a
multisystem treatment tool for children with ASDs. Finally, we also make recommendations for assessment and
treatment of children with ASDs, and provide directions for future research.
ARTICOLO 3
sito internet : http://adc.bmj.com/content/91/12/1018.short
Title
Auditory integration training and other sound therapies for autism spectrum
disorders: a systematic review
Abstract
Objectives: To determine the effectiveness of auditory integration training (AIT) or other
methods of sound therapy in people with autism spectrum disorders (ASD).
Study design: A systematic review was carried out of randomised controlled trials
(RCTs) of adults or children with ASD. Meta-analysis was attempted.
Results: Six RCTs of AIT, including one crossover trial, were identified, with a total of 171
participants aged 3–39 years. 17 different outcome measures were used, with only two
outcome measures used by three or more studies. Meta-analysis was not possible owing
to very high heterogeneity or presentation of data in unusable forms. Three studies did not
show any benefit of AIT over control conditions. Three studies reported improvements at 3
months in the AIT group for total mean scores of the Aberrant Behaviour Checklist (ABC),
which is of questionable validity. Of these, one study also reported improvements at 3
months in the AIT group for ABC subgroup scores. No significant adverse effects of AIT
were reported.
Conclusion: At present there is not sufficient evidence to support its use.
ARTICLE 1
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23140036
Title
A one-year prospective follow-up study of a DIR/Floortime parent training
intervention for pre-school children withautistic spectrum disorders.
Abstract
OBJECTIVE:
Determine the results of 1-year Developmental, Individual-Difference, Relationship-Based (DIR)/Floortime parent
training in developmental stimulation of children with autistic spectrum disorder (ASD).
MATERIAL AND METHOD:
Thirty-four, two to six years old children with ASD participated. Parents were encouraged to deliver 1:1 interaction
according to their child's developmental level, as they were modeled and coached. Pre-post videotapes were rated by
blinded assessors.
RESULTS:
Thirty-one families completed the present study. The data showed that adding home-base DIR/Floortime intervention at
the average 14.2 hours/week for one year could help 47% of the children to make good improvement (1.5 Functional
Development Level, FDLs or more), with 23% making fair progression (1 FDL), and the last 29% making poor
progression (0.5 FDL or less). There were significant increases in children's total Functional Emotional Assessment
Scale (FEAS), and Functional Emotional Developmental Questionnaire (FEDQ) scores and there was significant
decrease in the Childhood Autism Rating Scale (CARS) scores (p < or = 0.001). It showed that fidelity of the parents,
severity of the children, and baseline developmental status might affect the outcome.
CONCLUSION:
Adding home-base DIR/Floortime intervention at the average 14 hours/week for one year helped 47% of children
with autism to make good improvement in their development, and decreased autism's severity significantly.
ARTICLE 2
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/21977608
Title
[Autism spectrum disorders. Functional-emotional development hypotheses and their
relationship with therapeutic interventions].
Abstract
Autism Spectrum Disorders do not have a treatment that offers definitive solution to the serious challenges faced by
people who suffer from them. Consequently, as in other chronic conditions, many therapeutic interventions are offered,
each based on different neurobiological or psychological hypotheses. In the present article criteria for the organization
of the proposed interventions are suggested, and the main aspects of the affective diathesis hypothesis are summarized.
This theory emphasizes the importance of emotional signaling as a basis for development and is the theoretical
framework for one of the therapeutic options in the field of autism that is earning recognition in our country: the DIRFloortime model.
ARTICLE 3
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/21690083
Title
A pilot randomized controlled trial of DIR/Floortime™ parent training intervention
for pre-school children withautistic spectrum disorders.
Abstract
This pilot study was designed to test the efficacy of adding home-based Developmental, Individual-Difference,
Relationship-Based (DIR)/Floortime™ intervention to the routine care of preschool children
with autistic spectrum disorder. Measures of functional emotional development and symptom severity were taken. It
was found that after the parents added home-based DIR/Floortime™ intervention at an average of 15.2 hours/week for
three months, the intervention group made significantly greater gains in all three measures employed in the study:
Functional Emotional Assessment Scale (FEAS) (F = 5.1, p = .031), Childhood Autism Rating Scale (F = 2.1, p = .002),
and the Functional Emotional Questionnaires (F = 6.8, p = .006). This study confirms the positive results obtained by a
previous DIR pilot study (Solomon et al., 2007).
ARTICLE 4
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/17478575
Title
Pilot study of a parent training program for young children with autism: the PLAY
Project Home Consultation program
Abstract
The PLAY Project Home Consultation (PPHC) program trains parents of children with autistic spectrum disorders
using the DIR/Floortime model of Stanley Greenspan MD. Sixty-eight children completed the 8-12 month program.
Parents were encouraged to deliver 15 hours per week of 1:1 interaction. Pre/post ratings of videotapes by blind raters
using the Functional Emotional Assessment Scale (FEAS) showed significant increases (p <or= 0.0001) in child
subscale scores. Translated clinically, 45.5 percent of children made good to very good functional developmental
progress. There were no significant differences between parents in the FEAS subscale scores at either pre-or postintervention and all parents scored at levels suggesting they would be effective in working with their children. Overall
satisfaction with PPHC was 90 percent. Average cost of intervention was $2500/ year. Despite important limitations,
this pilot study of The PLAY Project Home Consulting model suggests that the model has potential to be a costeffective intervention for young children with autism.
ARTICLE 5
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23899200
Title
Considering college?: adolescents with autism and learning disorders participate in an
on-campus service-learning program.
Abstract
ABSTRACT This paper presents an example of successful collaboration between an entry-level
occupational therapy program and school-based setting that resulted in innovative programming for high school
students living with autism and learning disorders. The two-day programming provided opportunity for high school
students (n = 30) to practice a variety of life skills on the university campus as a way to support transition to secondary
education and learning in the natural environment. Occupational therapy master's students developed and implemented
the programming as a service-learning experience. Key factors for successful collaboration and outcomes, as well as
considerations for future programming and research, are outlined
ARTICLE 6
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23899082
Title
Family-centered occupational therapy and telerehabilitation for children
with autism spectrum disorders.
Abstract
ABSTRACT The purpose of this pilot project was to explore the use of telerehabilitation for collaborative
occupational therapy sessions with parents of children with autism spectrum disorders (ASD). The aim was to improve
carryover of therapeutic strategies by parents to address children's sensory modulation in their natural environments.
Four families participated in clinic-based sessions with the therapist followed by online sessions for six weeks. Data
consisted of family schedules, sensory diets, archived webcam sessions, and Sensory Processing Measure Home Form
scores before and after initiation of the telerehabilitation sessions. Results demonstrated the potential for using
telerehabilitation as a tool to provide collaborative occupational therapy in order to improve carryover of home
programs for children with ASD by providing opportunities for parents to ask questions, review sensory techniques, and
understand the therapist's clinical reasoning.
ARTICLE 7
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23893373
Title
Pilot Study: Efficacy of Sensory Integration Therapy for Japanese Children with
High-Functioning AutismSpectrum Disorder.
Abstract
This study's objective was to investigate the efficacy of sensory integration therapy (SIT) for children with highfunctioning autism spectrum disorder(HFASD). The subjects were 20 HFASD children with IQs above 70 selected
from previously collected data. Eight participated in individual SIT sessions, and 12 participated in group therapy (GT)
including social skill training, communication training, kinetic activities, and child-parent play for 8-10 months.
Changes in Total score and five Index scores on the Japanese version of the Miller Assessment for Preschoolers before
and aftertherapy between children in the SIT and GT groups were compared. The results showed that Total score and all
Index scores except for Verbal Index increased significantly in the SIT group, while only Total score increased in the
GT group. Furthermore, the SIT group showed more improvement compared with the GT group in Total score and on
Coordination, Non-verbal, and Complex Index scores. SIT might have a more positive effect on motor coordination
abilities, non-verbal cognitive abilities, and combined abilities of sensory motor and cognition in children with HFASD
when compared with GT. This study has limitations such as being an analysis of previously collected data. Further
study should be conducted with a randomized control trial. Copyright © 2013 John Wiley & Sons, Ltd.
Copyright © 2013 John Wiley & Sons, Ltd.
ARTICLE 8
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23888732
Title
Systemic multimodal approach to speech therapy treatment in autistic children.
Abstract
INTRODUCTION:
Conditions in which speech therapy treatment is applied in autistic children are often not in accordance with
characteristics of opinions and learning of people with autism. A systemic multimodal approach means
motivating autistic people to develop their language speech skill through the procedure which allows reliving of their
personal experience according to the contents that are presented in the their natural social environment. This research
was aimed at evaluating the efficiency of speech treatment based on the systemic multimodal approach to the work
withautistic children.
MATERIAL AND METHODS:
The study sample consisted of 34 children, aged from 8 to 16 years, diagnosed to have different autistic disorders,
whose results showed a moderate and severe clinical picture of autism on the Childhood Autism Rating Scale. The
applied instruments for the evaluation of ability were the Childhood Autism Rating Scale and Ganzberg II test. The
study subjects were divided into two groups according to the type of treatment: children who were covered by the
continuing treatment and systemic multimodal approach in the treatment, and children who were covered by classical
speech treatment.
RESULTS:
It is shown that the systemic multimodal approach in teaching autistic children affects the stimulation of communication,
socialization, self-service and work as well as that the progress achieved in these areas of functioning was retainable
after long time, too.
CONCLUSION:
By applying the systemic multimodal approach when dealing with autistic children and by comparing their
achievements on tests applied before, during and after the application of this mode, it has been concluded that certain
improvement has been achieved in the functionality within the diagnosed category. The results point to a possible
direction in the creation of new methods, plans and programs in dealing with autisticchildren based on empirical and
interactive learning.
ARTICLE 9
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/23882192
Title
Autism as a developmental disorder in intentional movement and affective engagement.
Abstract
We review evidence that autistic spectrum disorders have their origin in early prenatal failure of development in
systems that program timing, serial coordination and prospective control of movements, and that regulate affective
evaluations of experiences. There are effects in early infancy, before medical diagnosis, especially in motor sequencing,
selective or exploratory attention, affective expression and intersubjective engagement with parents. These are followed
by retardation of cognitive development and language learning in the second or third year, which lead to a diagnosis of
ASD. The early signs relate to abnormalities that have been found in brain stem systems and cerebellum in the embryo
or early fetal stage, before the cerebral neocortex is functional, and they have clear consequences in infancy when
neocortical systems are intensively elaborated. We propose, with evidence of the disturbances of posture, locomotion
and prospective motor control in children with autism, as well as of their facial expression of interest and affect, and
attention to other persons' expressions, that examination of the psychobiology of motor affective disorders, rather than
later developing cognitive or linguistic ones, may facilitate early diagnosis. Research in this area may also explain how
intense interaction, imitation or "expressive art" therapies, which respond intimately with motor activities, are effective
at later stages. Exceptional talents of some autistic people may be acquired compensations for basic problems with
expectant self-regulations of movement, attention and emotion.
KEYWORDS:
autism, communication, education, emotional expression, motor development, therapy
ARTICLE 10
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/22978246
Title
Use of assistance and therapy dogs for children with autism spectrum disorders: a
critical review of the current evidence.
Abstract
BACKGROUND:
Autism spectrum disorders (ASD) are characterized by deficits in social reciprocity and communication, and by
unusually restricted, repetitive behaviors. Intervention strategies based on the exploitation of the emotional aspects of
human-dog relationships hold the potential to overcome the difficulty of subjects with ASD to relate and interact
effectively with others, targeting core symptoms of this disorder.
METHODS:
This review summarizes the results of six published studies on the effects of brief interactions with dogs and the effects
of introducingdogs in families with a child diagnosed with ASD, with an emphasis on social behaviors and language use.
Furthermore, the possible mechanisms responsible for the beneficial effects observed are discussed.
CONCLUSIONS:
Although the studies described here are encouraging, further research with better designs and using larger samples is
needed to strengthen translation of such interventions to the clinic. In addition, potential applications of analyzing childdog interactions are highlighted to screen for early signs of the disorder.
ARTICLE 11
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/21689015
Title
Can dogs prime autistic children for therapy? Evidence from a single case study.
Abstract
BACKGROUND AND OBJECTIVES:
Canine-assisted therapy has been receiving growing attention as a means of aiding children
with autismspectrum disorder (ASD). Yet, only limited studies have been done and a great deal of literature related to
this intervention is anecdotal. The present study aims at providing additional quantitative evidence on the potential
of dogs to positively modulate the behavior of children with ASD.
SETTINGS/LOCATION, SUBJECTS, AND INTERVENTIONS:
A 12-year-old boy diagnosed with ASD was exposed, at his usual treatment location (the Portuguese Association for
Developmental Disorders and Autism at Vila Nova de Gaia, Portugal), to the following treatment conditions: (1) oneto-one structured activities with a therapist assisted by a certified therapy dog, and (2) one-to-one structured activities
with the same therapist alone (as a control). To accurately assess differences in the behavior of the participant between
these treatment conditions, the therapist followed a strict research protocol. The behavior of the participant was
continuously video-recorded during both treatment conditions for further analysis and comparison. Treatment outcomes:
In the presence of the dog, the participant exhibited more frequent and longer durations of positive behaviors (such as
smiling and positive physical contacting) as well as less frequent and shorter durations of negative behaviors (such as
aggressive manifestations).
CONCLUSIONS:
These findings are in accordance with previous experimental work and provide additional support for the assertion
that dogs can prime autistic children for therapy. Ultimately, this study may contribute toward a change for full
acceptance of canine-assisted therapy programs within the medical milieu. Additional studies using a similar research
protocol on more autistic children will certainly help professionals to work on the most effective methods to
individually serve this population through canine-assisted interventions.
ARTICLE 12
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/2793790
Title
Brief report: pet-facilitated therapy with autistic children.
ARTICLE 13
Sito internet : http://www.ncbi.nlm.nih.gov/pubmed/17826922
Title
Play with online virtual pets as a method to improve mirror neuron and real world
functioning in autistic children.
Abstract
Autism is a severe disease with no known cause and no cure or treatment. Recently, ourselves and subsequently others
found that so-called "mirror neurons" - neurons that respond not only when a person moves, but upon observation of
movement in another - are dysfunctional in autistic children. Here I suggest an easy, simple, inexpensive and fun
method to improve mirror neuron functioning in autistic children, increase appreciation in autisticchildren for the theory
of mind and thinking of others, and most importantly hopefully to improve real world functioning: play with virtual
online pets that are the "embodiment" of a stuffed animal the child has. Adoption and then care and play with online
pets forces, in a fun way, one to think about the world through the eyes and needs of the pet. A simple method to test
this play with online virtual pet therapy is described