Journal of Deaf Studies and Deaf Education
Empirical Article
Needs of Parents of Children Who Are Deaf/Hard of Hearing
With Autism Spectrum Disorder
Susan Wiley*,1, Samantha Gustafson2, Justin Rozniak1
Cincinnati Children’s Hospital Medical Center
Vanderbilt University
1
2
Received May 5, 2013; revisions received August 21, 2013; accepted September 2, 2013
Little is known about children who are deaf or hard of hearing (D/HH) with a coexisting autism spectrum disorder
(ASD). The objective of our study was to understand the
needs of children who are D/HH with coexisting ASD. We
posed questions for group discussion about diagnostic process, impact of dual diagnosis on communication, and helpful resources. Four parents of three children participated.
Challenges in the diagnostic process included the challenges
in the appropriateness of the evaluation tools and the limited
expertise of the professionals performing the evaluations.
Broad-based special educational settings were perceived as
helpful. Families described a range of broad-based communication strategies (spoken, sign, and written language, augmentative communication approaches). Families prioritized a
focus on behavior and day-to-day functioning over academic
performance. Families recognized the lack of professionals
who understand ASD and deafness but have found the internet and technology as a mechanism to connect to information
and families with similar needs.
There is a significant lack of evidence guiding the diagnosis and intervention for children who are deaf or hard
of hearing (D/HH) with a diagnosis of an autism spectrum disorder (ASD). The prevalence of ASD among
children with who are D/HH has been estimated
to be between 1 and 4% (Jure, Rapin, & Tuchman,
1991; Roper, Arnold, & Monteiro, 2003; Szymanski,
Brice, Lam, & Hotto, 2012). However, the prevalence
of ASD in this population is difficult to determine,
and estimates have been based on older literature and
*Correspondence should be sent to Susan Wiley, Division of
Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital
Medical Center, 3333 Burnet Avenue ML 4002, Cincinnati, OH 45229
(e-mail: [email protected]).
incomplete sampling of general populations. The diagnostic evaluations commonly used for those children
suspected to have an ASD have not been validated
on children who are D/HH. In fact, the guidance on
administration of the Autism Diagnostic Observation
Schedule (ADOS; Lord, Rutter, DiLavore, & Risi,
1999; Lord et al., 2000) specifically states that the
ADOS is not validated on children who are D/HH.
The only screening or assessment tools that have been
administered to small samples of children with who are
D/HH include the Autism Behavior Checklist (Roper,
Arnold, & Monteiro, 2003), the Sensory Profile (Gal,
Dyck, & Passmore, 2010), and the Baby and Infant
Screen for Children with aUtIsm Traits (Worley,
Matson, & Kozlowski, (2011). Unfortunately, even
these tools have not been appropriately validated in
children who are D/HH.
Furthermore, the evidence supporting specific
autism-related educational and therapeutic interventions, or information on adapting autism-specific
interventions for children who are D/HH is nearly
nonexistent (Szymanski, Brice, Lam, & Hotto, 2012).
Existing evidence for interventions is primarily found
within case reports on single children. For example,
one study focused on the use of Picture Exchange
Communication System for one deaf child (Malandraki
& Okalidou, 2007). Another study reported on the
effectiveness of a parent-training curriculum administered to one family of a child who was D/HH with
Asperger’s syndrome (Garcia & Turk, 2007). Although
© The Author 2013. Published by Oxford University Press. All rights reserved.
For Permissions, please email: [email protected]
doi:10.1093/deafed/ent044

Deaf/Hard of Hearing Children With Autism Spectrum 41
these two case studies provided some insight into the
beneficial effects of specific interventions, it is difficult
to generalize these studies broadly.
Even less is known regarding family needs for
these children who do not fully fit into the D/HH
community or the autism community (Beals, 2004;
Myck-Wayne, Robinson, & Henson, 2011). Families
are excellent resources for information regarding the
day-to-day needs of their children. Information gained
from families can help us identify appropriate research
questions as well as guide clinical programs and educational settings. Without a clearer understanding of the
impact of this dual diagnosis, it is challenging to move
forward our understanding of appropriate interventions for the dual diagnosis.
The purpose of our study was to gain an understanding of the needs of children who are D/HH and
have a coexisting ASD from the family’s perspective.
Methods
This study used focus group methodology with structured, open-ended questions and included parents of
children with a known dual diagnosis of hearing loss and
ASD. All families were identified through a pediatric
urban tertiary care center housing a strong audiology/
pediatric otolaryngology program and a developmental and behavioral pediatrics division. The Division of
Developmental and Behavioral Pediatrics has participated in the Autism Treatment Network (ATN/AIR)
since 2008 and uses a standardized approach to ASD
evaluations. Eligible children and families were identified through a clinical registry of children who are
D/HH. This registry includes children who were evaluated by a developmental pediatrician who collaborates
with the interdisciplinary Ear and Hearing Center in
the multidisciplinary evaluations for children who are
D/HH. Families of children who were D/HH and had
received a diagnosis of ASD through interdisciplinary
assessment were considered eligible for this study.
The interdisciplinary assessment for children
suspected as having an ASD has followed the autism
evaluation protocol based on guidance from the ATN.
This protocol includes a psychological evaluation and
speech/language evaluations. The psychology protocol
uses either the Stanford-Binet Intelligence scale (Roid,
2003) or Mullens scale of Infant Development (Mullen,
1995) for developmental/cognitive testing. Behavioral
measures include the Behavior Rating Inventory of
Executive Function (Gioia, Isquith, Guy, & Kenworthy,
2005), Child Behavior Checklist (Achenbach & Rescorla,
2001), Gilliam Autism Rating scale (Gilliam, 1995),
and the Childhood Autism Rating scale (Schopler, Van
Bourgondien, Wellman, & Love, 2010) and Autism
Diagnostic Interview (Rutter, Le Couteur, & Lord, 1994).
The speech/language evaluation includes a measure of
speech and language abilities (Preschool Language scaleIV (Zimmerman, Steiner, & Pond, 2002, or Preschool
Language scale-V (Zimmerman, Steiner, & Pond, 2011),
or Clinical Evaluation of Language Fundamentals
(CELF; Semel, Wiig, & Secord, 2003), a pragmatic evaluation with the Social Communication Questionnaire
(Rutter, Bailey, & Lord, 2003), Pragmatics profile of
the CELF (Semel, Wiig, & Secord, 2003), and/or an
Autism Diagnostic Observation Schedule (Lord, Rutter,
DiLavore, & Risi, 1999).
Our clinical protocol makes some adaptations for
children who are D/HH. Sign language interpreters are
included in the evaluation process when appropriate. In
children with significant challenges with sign production or processing sign language, we have requested
that an interpreter from the child’s school be used for
the evaluation process in order to convey information
more effectively to the child and understand their sign
utterances if they are somewhat idiosyncratic. This
approach is used to gain the best “snapshot” of the
child’s capabilities and needs. All of the children represented in the study were seen by a developmental pediatrician who has extensive experience with children
who are D/HH. The above evaluation tools were used
to clarify developmental patterns and were interpreted
with the impact of hearing loss on scoring considered.
A team of professionals representing expertise in ASD
and expertise in hearing loss arrived at a consensus
opinion for the diagnosis of ASD.
Families of 22 children with the dual diagnosis
of any degree of hearing loss and the presence of an
autism spectrum label were identified. Eighteen families living within a 2-hr drive received a letter describing the study. This was followed by phone contact by
study personnel to explain the study further, answer
any questions regarding the study, and determine if
42 Journal of Deaf Studies and Deaf Education 19:1 January 2014
families were interested in participating. Of the 18 families receiving a letter, three were returned due to incorrect address. Two phone numbers were disconnected.
Of those 13 families successfully contacted, six families
planned to participate, and two others indicated they
would be interested but distance and scheduling prohibited participation. In an attempt to accommodate
family needs, child care with trained personnel, interpreter services, and dinner were offered to participants.
Focus group questions were generated based on
background literature review. The focus group questions included the following:
1. Tell us about your experiences as you received
your child’s diagnosis of ASD.
2. How has the diagnosis of an autism spectrum
paired with hearing loss impacted your family?
3. How has the dual diagnosis impacted communication decisions and strategies for your child?
4. What resources/supports have you found
helpful? Where did you find out about these
resources (professionals, website, other people,
and so forth)?
5. In thinking about your child with hearing loss
and an ASD, what is on your wish list?
6. What items on your wish list are most important
to you?
During the focus group, a trained facilitator from a
state educational agency focusing on autism and other
low incidence disabilities was used. Responses were
audiotaped and transcribed. As the results were limited
by small family participation, results were described
based on questions rather than by theme.
This study was approved by the Cincinnati
Children’s Hospital Medical Center Institutional
Review Board.
Results
Although six families responded with interest in participating, only three families attended. The four parents
who participated were Caucasian, two parent families,
and were highly educated (all parents and spouses
who did not attend the session had a college degree or
more). Of the three participating families, there were
two mothers and two fathers.
Characteristics of Children Represented
Among the three children represented, there was
a wide range of hearing loss and severity of autism
represented. Table 1 illustrates the characteristics of
interest for each child whose family participated in
the focus group. One child had unilateral hearing loss
of unknown etiology and high functioning pervasive
developmental disorder, not otherwise specified (PDD
NOS). The other two children had profound bilateral
sensorineural hearing loss: one due to congenital cytomegalovirus (CMV) with autism and the other due to a
complex genetic syndrome with PDD NOS.
All children were identified with their hearing loss
and their diagnosis of an ASD at a tertiary care center.
The children attended suburban public school programs. Two of the three children had been enrolled in
Early Intervention Services within the state that provides home-based services with providers knowledgeable in deaf education. The child with unilateral hearing
loss was identified after the age of Early Intervention
Services eligibility.
Family Responses About Suspicions Beyond
Hearing Loss and Diagnostic Process
Two families recognized concerns related to an autism
spectrum at 3–4 years of age. These concerns became
most obvious by children’s structured exposure to
peers in preschool programs. The experience around
the diagnostic process varied for the families. There
were some consistent concerns raised by the families
related to a lack of parental involvement in the evaluation process and all three families noted that their children were asked to do things they knew the child could
not do.
Families described concrete examples of strategies
used to encourage participation in testing that were
not effective, such as using nonmotivating reinforcement for participation. For instance, one child was
given stickers as a reward for completing tasks during
testing.
The parent expressed that “They used stickers in
his evaluation to get him to participate, but he didn’t
care about stickers. They never asked for my input,
like what would help reinforce him or keep him in the
room, keep him happy.”
Social communication classroom
Home-based EI
School for the Deaf with manual approach in
apraxia program
Mainstream setting with IEP supports
Special needs preschool
Oral
Visual schedules
Social stories
Communication mode
Autism-specific strategies used
Visual schedules
PECS
Dynavox
Autism classroom
Home-based EI
Classroom for children with motor
disabilities
Special needs preschool
Developmental disabilities classroom
Signing
CHARGE syndrome
Profound bilateral
Birth due to syndrome
6 months
Unilateral CI, no longer using
PDD NOS
6 years
Unknown
Child 3
Note. ASD, autism spectrum disorder; CI, cochlear implant; CMV, cytomegalovirus; EI, early intervention; HL, hearing loss; HA, hearing aid; IEP, individualized education program; PDD NOS, pervasive
developmental disorder, not otherwise specified; PECS, picture exchange communication system.
Total communication: writing, signing, spoken
language
Visual schedules
Use PECS
Congenital CMV
Profound bilateral
2 months
4 months
Bilateral CI
Autism
4 years
3 years
Child 2
Unknown
Unilateral mild to moderate
3 years
4 years
HA
PDD NOS
6 years
4 years
Child 1
Etiology of HL
Type and degree of HL
Age of HL identification
Age of amplification
Type of amplification
Autism spectrum label
Age of identification of ASD
Age family suspected developmental
difference
Current educational placement
Early educational placements
Characteristic
Table 1 Characteristics of children
Deaf/Hard of Hearing Children With Autism Spectrum 43
44 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Families recognized that the evaluation process
must include things that go beyond a child’s capabilities, but they specifically commented on the challenges
put before their children with the evaluation tools and
process.
They just tried to do stuff that you knew was a
waste of time.
They went way over his head.
One family also noted a challenge with the communication needs of their child during the evaluation
process. Although, there was a sign language interpreter available for the evaluation to provide access to
the child’s communication and provide a mechanism
for conveying information to the child, this was insufficient due to the child’s lack of experience in using an
interpreter. “The evaluation included an interpreter.
He had never used an interpreter. He had no concept
she was talking to him by someone else.”
Families also had varied emotional experiences
related to receiving the diagnosis of an ASD. One family felt “validated” about their prior concerns and suspicions of the autism spectrum label and noted it was
“freeing.” They were “ready” for testing to know for
sure what they thought was going on. Despite these
feelings of validation and recognition that a label would
open more opportunities for their child, the experience
was still emotional.
The experiences related to the evaluation process varied among the families. One family felt the
process was very open and honest, whereas another
family experienced considerable problems. One family described an evaluation that was particularly concerning. This family felt they were not considered
as part of the evaluation process; that inappropriate
intellectual assessment tools were used (i.e., a tool
not valid in children who are D/HH), and most
importantly, that the evaluator was insufficiently
trained and inexperienced in assessment for the dual
diagnosis for children with hearing loss and an ASD.
It is important to note that this family’s child was
evaluated and diagnosed by a graduate student with
a supervising professional observing through a twoway mirror. This parent commented that the process
was semiprofessional and that she “felt like he was a
guinea pig.”
Not only was this parent concerned with the
diagnostic process but she also expressed discomfort in the diagnostic delivery. This parent felt anger
about how the information was conveyed as she
considered the person disclosing the diagnosis to
have “limited qualifications” to convey the information, have given “blanket statements which were not
true,” and unaware of her emotional cues of needing tissues causing her to “have to ask for the box
of tissues which were behind the student.” This
parent conveyed feelings of being alone and having
significant anger around the diagnostic process. She
recognized that they needed the child’s diagnosis on
paper but wished she did not do the testing. She also
recognized that the student conveying the diagnosis
was likely quite nervous.
In general, families who had an emotional response
to the diagnostic process noted a need to have a diagnostic label to access additional services related to their
child’s communication disorder and seemed to recognize that the assessment battery was insufficient to take
into consideration their child’s needs related to his/her
hearing loss.
Impact of Diagnosis on Family
The families all reported some challenges with informing their extended family about their child’s diagnoses;
however, extended family members showed an interest in learning more. They were interested in understanding how to communicate effectively or provide
appropriate behavioral approaches once they gained
an understanding of the child’s needs related to ASD.
For the family of a child with the complex genetic syndrome, the diagnosis of the syndrome had the greater
impact on extended family members than the label
of an ASD. Some families experienced denial from
extended family members in accepting a child’s needs.
Extended family challenges with acceptance related to
both hearing loss as well as behavioral differences from
the ASD. One grandparent was concerned about pointing out a child’s difference by choosing a colored hearing aid earmold that could be easily visible to others.
Families were also sometimes given advice by extended
family members about behavioral challenges that did
not take into consideration challenges related to ASD.
Deaf/Hard of Hearing Children With Autism Spectrum 45
One family chose to share evaluation reports with
extended family members. This seemed to help their
understanding and processing of the child’s needs.
They now ask more questions such as “did I deal with
that okay, or how did I deal with that?”
Another family noted that extended family members were in denial and commented that “he’s an only
child and he’s been spoiled.” However, over time,
extended family members have sought out more education and shown an interest in taking sign language
classes. This parent reported that “having them on
board and not in denial has been very helpful.”
Positive comments about extended family members
indicated that the impact of “having a child with autism
and hearing loss has been on-going and constantly
evolving. It has made them more compassionate and
brought us closer to our relatives.”
One family discussed how they decide who to
disclose information about a child’s needs. They prioritized sharing information about their child’s needs
with people who have closer interactions and a need to
know how to respond to specific needs.
Finding Effective Resources
All three families noted that schools were their
primary resources for information and support.
Teachers were specifically identified as critical professionals for assisting them in learning more about
their child’s needs and in identifying interventions
and resources for their child. It was particularly
important for families to have strong communication
between school and home to allow consistent followthrough for supporting their child’s development at
home. “It all depends on your teacher. We used to get
materials to bring home that we could work on with
her on vacations and breaks. Now we aren’t getting
any of that.”
Additionally, the internet was noted as a consistent resource used among the families. All three families used the internet to learn more about strategies to
help their children, to network with other families, and
to connect with professionals via e-mail for providing
guidance when problems arose. One family mentioned
the positive impact of daily e-mail communication with
their child’s teacher.
Other Identified Themes: Challenging Behaviors
Families also identified behavioral struggles as potential challenges from time to time. The need for routine
and the need to prepare their children for change was a
common experience. One parent described the necessity of preparing for change related to their child’s
anticipation of needing to change his hearing aid battery. “If the hearing aid battery goes dead, you have to
work him through that. We have to have a plan. It’s little things like that.” Another family noted the broad
need for preparing their child on what to expect from
the day.
You really have to prep him for what it is going to
be ahead of time otherwise you don’t know what is
going to happen, or when it is out of his expectations, you really have to deal with a meltdown. He
is extremely routine driven.
Another family struggled substantially with behavior when out in the community. “This is a child who is
doing well in several subjects, but in the hallway, he’s
attacking other children, he’s hitting or kicking, he lays
around on the floor.”
These challenges prompted the families to discuss
their priority to focus on functional and social skills
over academic skills.
It’s very difficult to teach him what’s socially
acceptable…At some point, I’m going to look at
him and say, it doesn’t matter to me you know your
multiplication table, I can’t take you anywhere,
I can’t take you to the grocery store.
Other Identified Themes: Child’s
Communication Needs
The impact of the dual diagnosis on communication
was also evident. The use of visual schedules was also a
common theme among the families. All families noted
how important and helpful visual schedules are. Social
stories and social skills groups were also mentioned
as helpful, but families were limited by geographical
considerations because most social skills groups were
housed far from their region of the city and would
require scheduling considerations and travel time in
order to participate.
46 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Other’s noted that it is difficult to follow through
with communication strategies that are used at school
(picture exchange communication system [PECS]) in
the home setting.
I don’t force it. I follow his lead. At home, if he
weren’t communicating with me, I would force the
issue (PECS). He really is a total communication
child. He does best if you put things in writing, and
you sign, and you speak. He can soak and absorb
everything you throw at him.
One family noted it was challenging for their
child to initiate communication. “He has a hard time
expressing his wants. He can’t express when he is hurt.
I have to prompt him to use his signs and he is getting
better with that.”
Another family described the importance of amplification for their child. Their child gets very upset
when he does not have his amplification. This child has
unilateral hearing loss and can understand and communicate when not using amplification, but this comment suggests he relies on unilateral amplification for
processing information.
Issues related to interpreters were raised by two families. One family noted that using an interpreter during
the diagnostic process posed challenges as their child had
never used an interpreter. Over time, this child was able to
rely on an interpreter to access communication. This parent described current concerns about losing interpreter
services through the school program as he was doing well
with oral communication as well. Another family had to
advocate strongly for an interpreter for their child during school. This addition to the child’s programming has
allowed expansion of the child’s communication strategies.
The qualifications and expertise of professionals
were important to families. Having at least a master’s in
the content area (autism/special education or deaf education) was mentioned as important. It also was noted
that it would be helpful if the clinical therapists outside of the educational system who focus on ASD were
knowledgeable about needs related to deafness.
Wish List
Families were asked to convey what was on their wishlist. Two families indicated that they had found schools
in other states with specialized instruction for dual
diagnosis (deafness and autism, deafness and vision
impairment) that they wished were readily accessible.
Access to social skills groups near their home region
was also noted as desirable by two families.
Families were appreciative of extended school year
(ESY) services, but in general found them insufficient
to meet their children’s needs. “He qualifies for ESY,
but it’s two days a week for just a couple of hours.
I appreciate them doing it, but it is not enough. He
needs intensive programming year-round.”
It was also important to families to be able to
observe their children’s outpatient clinical therapy. In
some settings there are video monitors where families
can observe therapy. This was appreciated by families
who had experienced this technology and agreed by
others that if they had access to this, they would find it
very helpful and allow them to observe interventions to
try at home with their child.
Discussion
With the paucity of information about family needs
in the literature, focus group methodology can serve
as a first-step to address the tremendous gap in care
that children who are D/HH with an ASD experience. Despite a small number of parent participants,
valuable information related to the diagnosis and care
of children with a dual diagnosis of hearing loss and
ASD were shared. Challenges in the diagnostic process
included the impact of not having appropriate evaluation tools that can take into consideration a child’s
hearing loss and communication needs as well as difficulties with comfort level of the professionals who
are evaluating children with ASD. In our setting, many
members of the team of providers are knowledgeable in
ASD but do not have much exposure to or experience
evaluating children who are D/HH.
Many families indicated concerns about their child
being asked to do things that they felt were beyond their
capability. This is a common aspect of structured evaluations as many tools require children to miss a number
of consecutive items in order to obtain a “ceiling” of
capabilities. Whereas this information may be helpful
in understanding a child’s strengths, it is important to
convey this aspect of evaluation to families. Families
Deaf/Hard of Hearing Children With Autism Spectrum 47
were also interested in providing more guidance to
evaluators related specifically to how their children
may participate more effectively. With the realization
that evaluation items may need to be presented in a specific manner, it is helpful to have the family’s expertise
about their child’s interests to encourage continued
participation.
A struggle one family experienced during their
child’s evaluation was the inclusion of a trainee. Many
tertiary assessment locations also serve as training sites.
This is helpful in exposing new professionals into the
field to the complex presentations of children. However
the inclusion of individuals newer to the field of assessment may contribute to families being less trustworthy
of the conclusions from the assessment. In these more
complex evaluations, it may be appropriate for supervisors to be more actively involved in the evaluation and
the discussion of the results with the family. It is also
noteworthy to mention that the established protocols
for children with autism are not fully appropriate for
children who are D/HH. However, even with the lack
of validated protocols, it is reasonable to make a case for
the use of standardized measures to evaluate children
rather than relying solely on clinical impression. There
are limitations in using protocols. For example, the
cognitive testing battery commonly used for children
with ASD may not be appropriate for children who are
D/HH. Therefore, evaluators need to recognize when
to shift from a protocol to choose a more appropriate
measure of a similar construct.
Families also noted a challenge in finding knowledgeable professionals in therapeutic settings where
there is a paucity of providers with expertise in both
content areas of hearing loss and autism. This challenge is similar to that of the families described by the
work of Myck-Wayne et al. This study noted that families described fragmented care, challenges in responsiveness of professionals to collaborate, and insufficient
knowledge within the deaf education programs to
address needs related to an ASD. The families who
participated in our study found broad-based special
educational settings to be more effective for their children than deaf education programs or clinical therapeutic settings. This may be due to the educators and
therapists in school settings having access to expertise
across disability labels with close proximity. In clinical
settings, services may be provided with little opportunity to collaborate with individuals outside the content
area of expertise. The lack of proximity and time to
build teams of providers is a significant limitation for
the interventions of these more complex children.
Families indirectly mentioned a number of needs
related to communication. Similar to the findings of
Myck-Wayne et al., the children represented in our
small group used communication systems relying on
multimodal strategies. This was the case even with all
participating families having pursued amplification
and when clinically appropriate, cochlear implantation. Families described a range of strategies, including reliance on visual supports, social stories, Picture
Exchange Communication System, written language,
sign language, and augmentative communication
devices. These strategies span well beyond the traditional communication choices of families with typically
developing children who are D/HH. Providers within
the field of deafness should recognize that the traditional communication tools used by children who are
D/HH are insufficient for addressing the underlying
communication disorder of children who are D/HH
with an ASD. By limiting the communication intervention to traditional strategies and misunderstanding
the need to develop foundational communication skills
such as joint attention, turn taking, and choice making
further delays in the development of an effective communication system for children with the dual diagnosis
are likely to occur.
Within educational settings, families preferred
to identify goals and interventions which focus on
behavior and day-to-day functioning over academic
performance. Families found schools to be a strong
resource for information. This may relate to the
interdisciplinary nature of school intervention and
the opportunities within their specific school districts for collaborative intervention. Furthermore,
families found the internet to be very helpful in finding resources and in family-to-family networking.
Connecting with families with similar experiences is
limited by the geographic spread of children with the
dual diagnosis as well as the lack of support groups
specific to the dual diagnosis. Thus, the internet can
serve as a source of connection to others with similar
needs for some families.
48 Journal of Deaf Studies and Deaf Education 19:1 January 2014
It is important to recognize that there were positive experiences that families had in their journey. They
described that family members became more accepting of their child’s needs and their child’s needs have
prompted extended family members to become more
compassionate.
Our families conveyed some similarities and differences in their experiences as compared with families of
children who are D/HH. Within the literature regarding family needs and perspectives about early identification of hearing loss Young & Tattersall (2007) and
McCracken, Young, & Tattersall (2008) noted that, in
general, families felt positive about identifying a hearing loss at a young age; however, there were pressures
related to achieving based on a time table. They also
noted families were desiring to avoid abnormal development and had greater dissatisfaction when it was
not clear how to best intervene for their child’s needs.
These investigators also indicated family’s desire for
family-to-family support as well as receiving familycentered practice. Families were willing to convey how
a system might be improved. The overlapping experience of the families in our study were in their desire
for family-to-family support and willingness to convey
improvements in the current system of care.
Safe, Joosten, & Molineux (2012) interviewed families of children with ASD. The families of children
with ASD described similar challenges as compared
with the families in our study. Safe’s families described
changing expectations of normality, frustrations in
finding the right supports, including within school
settings, and a sense of social isolation. These families
also noted difficulties in finding peers for their children. These families also indicated it can be difficult to
manage behaviors and they experience restrictions in
activities in which their families can participate. Many
families noted low levels of social supports.
This study was limited by low participation despite
offering skilled daycare and interpreter services for
children. We had hoped these strategies would assist
with the children’s care needs and allow families to
more readily participate. However, as the parents who
did participate indicated, it is hard for their children to
have a different schedule, particularly without knowing
specifically how to prepare their child for a new experience. With a small group of highly educated parents,
the information from this study may be difficult to
generalize to a broader scope of families. Furthermore,
participating parents were particularly effective advocates for their children, were technologically knowledgeable, and had ready access to the internet. Studies
of this type often include information from mothers rather than both caregivers. The inclusion of two
fathers participating in the focus group provided a
broader perspective on important issues. Despite these
limitations, this forum was an important step in beginning to understand the needs of families of children
who are D/HH with ASD.
The information gleaned from families’ experiences is important to help guide knowledge, provision
of care, and prioritizing research questions to answer in
order to develop and implement evidence-based practice for this complex group of children.
Funding
Health Resources and Services Administration
(R40MC21513); The Health Resources and Services
Administration, US Department of Health and
Human Services (HRSA-11–036); Leadership
Education in Neurodevelopmental and Related
Disabilities.
Conflicts of Interest
No conflicts of interest were reported.
Acknowledgments
We wish to thank the participating families for helping guide our understanding of the unique needs of
children who are D/HH with an ASD. Their candor
in sharing their personal experiences is invaluable, and
we hope their knowledge will make us better people
and professionals. We would also like to thank Donna
Owens from the Ohio Center for Autism and Low
Incidence for facilitating the focus group.
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