Effects of Age on the Types and Severity of Excessive Fear or the

Journal of Mental Health Research
in Intellectual Disabilities, 5:215–235, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 1931-5864 print/1931-5872 online
DOI: 10.1080/19315864.2011.596614
Effects of Age on the Types and Severity of
Excessive Fear or the Absence of Fear in
Children and Young Adults With Autism
DAVID M. RICHMAN AND WESLEY H. DOTSON
Burkhart Center for Autism Education & Research
Texas Tech University
CHAD A. ROSE
Department of Language, Literacy and Special Populations
Sam Houston State University
SAMUEL THOMPSON AND LAYLA ABBY
Burkhart Center for Autism Education & Research
Texas Tech University
This study identified (a) patterns of fearful stimuli for children and
young adults with autism spectrum disorder (ASD), (b) the severity
of the fear, and (c) whether excessive fear or the absence of fear
negatively affected the participant’s quality of life. A web-based
survey was used to distribute a modified and extended version of
the Fear Survey Schedule for Children-Revised (Ollendick, 1983)
to 328 families with children with ASD. Sixty respondents completed the survey, representing a cross section of individuals with
ASD from 3 to 22 years old. Responses were analyzed using both
descriptive and multivariate statistical analyses for the total sample
and the 3 age groups: 3–7, 8–13, and 14–22 years old. The overall
severity of fears decreased and the types of stimuli feared changed
from concrete (getting a shot, going to the dentist) to more socially
based (being evaluated, being teased) with increasing age. Thus,
although the severity of fears may decrease throughout childhood
and into early adulthood, the fears that are present may actually have a greater negative effect on daily life functioning and
thus warrant prevention attempts to reduce the probability that
Address correspondence to David M. Richman, Burkhart Center for Autism Education &
Research, Texas Tech University, 3008 18th Street, Room 113 (TTU Mailstop 1071), Lubbock,
TX 79409–1071. E-mail: [email protected]
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fears will become more debilitating and restrict their vocational
and recreational activities. Results are discussed in terms of early
intervention and potential prevention of excessive fears in ASD.
KEYWORDS fears, phobias, autism, autism spectrum disorder,
quality of life, risk-taking behavior, child safety
A lengthy history of research has been devoted to documenting the development of normal and excessive fears in typically developing children and
adolescents (see reviews by Gullone, 1999, 2000), but there is very little
research on fears and phobias in children with neurodevelopmental disorders such as autism spectrum disorder (ASD; Evans, Canavera, Kleinpeter,
Maccubbin, & Taga, 2005; Matson & Love, 1990). This lack of research
impacts our ability to generalize what is known about the typical progression of fears throughout normal child development to individuals with ASD.
Additionally, practitioners working with individuals with ASD struggle with
predicting the most effective and efficient treatments or even identifying
when the presence or absence of fear is normal or abnormal for individuals
with ASD.
FEARS OF TYPICALLY DEVELOPING CHILDREN
Studies about the fears of typically developing children have been conducted
for over a century (Gullone, 1999, 2000). The stimuli that people typically
fear changes from early childhood to adulthood, as does the overall intensity
of fears. Typically developing individuals often progress from concrete fears
in childhood (animals, loud noises, darkness) to more abstract fears in adolescence (social criticism, schoolwork) and global fears (economics, political
concerns) in late adolescence. Overall intensity of fears tends to decrease as
typically developing children get older. Girls tend to report more fears and a
higher overall intensity of fear than boys, and they typically are afraid of different stimuli (e.g., girls are more often afraid of the dark, snakes, dirt, and
animals whereas boys often fear harm, bodily injury, and failure; Gullone,
1999, 2000).
Various methods and measures for the quantification of fear in children have been explored, including adult retrospective reports, child reports,
and self-report interviews (Gullone, 1999). One of the most frequently used
methods is survey research, and the most commonly used assessment is
the Fear Survey Schedule for Children-Revised (FSSC-R; Ollendick, 1983).
A scale containing 80 fear items (e.g., snakes, riding in a car), it measures
the types and severity of children’s fears, and it has been demonstrated to
have high reliability (internal consistency, test-retest reliability, and stability)
Fears in Autism Spectrum Disorder
217
and validity (Ollendick, 1983). In addition to providing information about the
severity of fear for each item, the severity of fear within subsets of the items
can also be determined. The fear items group into five factors, or subsets,
that cluster together by how similarly parents score the fear items. Those five
factors are (a) fear of failure and criticism, (b) fear of the unknown, (c) fear
of injury and small animals, (d) fear of danger and death, and (e) medical
fears (Ollendick, 1983). The FSSC-R has been used with typically developing children, and it has also been used with children with disabilities (Evans
et al., 2005; Matson & Love, 1990).
LACK OF RESEARCH ON FEARS OF CHILDREN WITH ASD
Only two studies have quantified the development and types of fears
of children and adolescents with ASD, and both studies suggest that the
number, intensity, and types of fears of people with ASD are different from
typically developing people. Matson and Love (1990) compared the fears
and phobias of 14 children with ASD to 14 chronological age-matched
neurotypical (NT) children. Parents completed the FSSC-R to document the
types of fears exhibited by the children. Children with ASD presented with
the highest level of fear when exposed to environmentally related events
such as thunderstorms, dark places, large crowds, dark closets, going to bed
in the dark, and closed places. NT children were more fearful of failure or
criticism, physical harm or injury, small animals, and punishment. Matson
and Love did not report differences in fears across age or intelligence level,
and such a comparison would have been difficult to interpret given the very
small sample size.
Evans and colleagues (2005) expanded on Matson and Love’s (1990)
study by comparing the types and intensity of fears for 25 children with
ASD and 43 children with Down syndrome to NT mental age (N = 45) and
chronological age matched controls (N = 37). Using an exploratory factor
analysis, they identified seven clusters of fears (Situation, Harm, Medical,
Animal, Social, Environment, and Stranger) and then conducted multivariate
analysis of variance (MANOVA) analyses to compare severity scores across
factors for each experimental group. Contrary to the findings by Matson and
Love, children with ASD exhibited higher levels of fear toward situational
events (e.g., meeting new people, being part of a conversation) and medical
fears (e.g., shots, doctor’s exams) and lower levels of fear of potentially
harmful and injurious situations (e.g., guns, death) than NT peers. Although
the investigators reported IQ scores for all participants, they did not report
any analysis of whether IQ level predicted type or intensity of fears in any of
the groups. Also, the sample of individuals with ASD had a lower IQ (mean
Full Scale IQ = 59.6), much closer to the mean IQ for the Down syndrome
group (42.67) than the NT control group (111.91).
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Although Matson and Love (1990) and Evans et al. (2005) provided
important preliminary data on the development and types of fears of children
and adolescents with ASD, additional research is needed to examine the
relation between ASD and fears with a larger sample across different age
ranges and to further refine measurement instruments to explore additional
information about the types and consequences of fears in ASD. Specifically,
there is a need to identify and account for the impact of age on fears in
individuals with ASD and to begin to explore whether reports of excessive
fear or the absence of fear are correlated with adverse consequences.
CONSEQUENCES OF EXCESSIVE OR ABSENT FEARS IN ASD
Understanding the development and types of fears in children and adolescents with ASD will set the stage for better addressing the consequences
(both adaptive and maladaptive) of those fears. Although previous research
(Evans et al., 2005; Matson & Love, 1990) investigated the types of fears in
ASD, none of the prior studies have documented the common consequences
of excessive fears. For example, individuals with ASD who have an excessive fear of crowded spaces or strangers may avoid or act out to escape from
social situations (as suggested in the positive correlation between fears and
problem behavior reported by Evans et al., 2005), thus setting the stage for
decreased opportunities to learn and practice social skills, an area already
difficult for those with ASD. A failure to address excessive fears may also
lead to the development of a clinically significant level of anxiety sufficient
to receive a diagnosis of an anxiety disorder.
Comorbid psychiatric disorders are more prevalent in individuals with
ASD than in their NT peers, with estimates between 30% and 80% of codiagnoses of an anxiety disorder (Klin, Pauls, Schultz, & Volkmar, 2005; Muris,
Steernemen, Merkelbach, Holdrinet, & Meesters, 1998; Wood & Gadow,
2010). Results from a 2005 survey by the National Autistic Society revealed
that one of the most common concerns reported by caregivers was excessive
anxiety (Mills & Wing, 2005). The most common type of anxiety disorder in
individuals with ASD is specific phobia, affecting approximately 47–64% of
the population (Muris et al., 1998). A recent review of anxiety disorders in
ASD (Wood & Gadow, 2010) reports that excessive anxiety has also been
correlated with increased severity of other symptoms of ASD (e.g., stereotypic behavior, obsessive thoughts) and decreased adaptive functioning
(e.g., decreased language use and social interaction).
Current research has also failed to document the potentially damaging absence of fear of stimuli that may be harmful to children with ASD.
Anecdotally, children with ASD sometimes appear completely unafraid of
events that other children tend to avoid (deep water, moving cars), often
occasioning concern on the part of parents and caregivers as well as putting
Fears in Autism Spectrum Disorder
219
the child at direct risk for harm or death. Thus, it is important to document
not only what individuals with ASD are afraid of but also what they are
not afraid of that may result in risky behavior that may result in accidental
self-injury.
PURPOSE OF THE CURRENT STUDY
Little is known about how fears develop, maintain, and change throughout the life span for individuals with ASD. Documenting the types of fears
across different age groups of people with ASD may allow clinicians to better
prevent the development of excessive fears and address the consequences
of excessive or lack of fears for people with ASD. Additionally, questions
concerning consequences of fears and the opposing absence of fears have
yet to be documented for individuals with ASD. Thus, the purpose of this
study was to partially replicate and extend the research on fears in ASD by
assessing the types of fears in a relatively large convenience sample of children and young adults with ASD and for the first time documenting parental
report of consequences of excessive fears and the lack of fear for individuals
with ASD.
METHOD
Participants and Setting
A link to a survey prepared in Qualtrics (an online survey company: www.
qualitrics.com) was emailed to all parents on a mailing list of families with
children with ASD in the West Texas area maintained by the Burkhart Center
for Autism and the South Plains Autism Network. Of the 328 families contacted, 65 responded (20% response rate) to the survey, and the 60 who
completed at least 95% of the survey questions were included for data analysis. We were interested in a representative sample of children and young
adults with ASD, so we explicitly stated in the participant recruitment e-mail
that we wanted a representative sample and we asked all families to consider volunteering for the study whether or not their child had numerous
and excessive fears.
Survey Instrument
The online survey contained 122 items, including all 80 items in the FSSC-R
(Ollendick, 1983). The questions on the FSSC-R ask a caregiver (parent,
custodian, or guardian) to rate different items that children may be afraid of
along a 3-point scale (1 = None, 2 = Some, 3 = A lot of fear). In addition
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to the 80 FSSC-R items, the survey used in this study also included 42 other
items related to potential fears of children with ASD based on both the
modified or additional items used by Evans et al. (2005) and the clinical
experiences of the investigators of the current study (see Appendix for a list
of all items added to FSSC-R). Respondents rated the additional 42 items on
the same 3-point scale.
Novel follow-up questions were added to the FSSC-R to gather data
about the impact of the presence or the absence of fears on the child’s
daily functioning. If a parent indicated that the child had “A lot” (max Likert
score of 3) of fear of dogs, they were asked a “Yes/No” follow-up question
about whether the excessive fear negatively impacted the child’s quality of
life (e.g., does the child resist going outside or to parks because he or she
might see a dog). If the respondent indicated “None” for fear of dogs, he or
she was asked a “Yes/No” follow-up question about whether the absence
of the fear was risky or dangerous for the child (e.g., reaching out to touch
an unfamiliar dog). For some items (e.g., riding in a car), an absence of
fear was not dangerous in any possible way, so on those items for which
all members of our research team agreed that an absence of fear could
not be dangerous, the follow-up question was omitted (50 of the items).
Finally, the respondent was asked to (a) describe one particular item or
event that the child was most afraid of and (b) describe how the child
typically reacted when presented with that item. This question was open
ended and respondents typed their responses on the web-based survey and
responses were coded for common patterns of fearfulness and responses to
fearful stimuli. Responses were coded for thematic content (Braun & Clarke,
2006) and ranked by percentage reported. To assess inter-rater agreement,
30 responses (53% of the total responses to the open-ended question) were
randomly selected and coded by a second rater according to the operational
definitions of themes developed by the primary rater; type of fear was accurately categorized for theme with 93% reliability and typical child reactions
to the fearful items were rated with 95% reliability.
Finally, demographic information about both the respondent and the
child with ASD were documented. The survey asked about the respondent’s
relationship to the child and time spent with the child each day on average.
Questions about the child with ASD included the child’s birth date, gender,
phobia and psychiatric diagnoses if any, race, IQ level, and IQ test used for
testing.
Data Analytic Approach
Data were analyzed in a progressive format to sequentially address the
primary goals of the study. First, due to the dearth of literature on fears
associated with students with ASD, descriptive statistics were examined.
Fears in Autism Spectrum Disorder
221
These statistics provided the foundation for understanding topography of
responses based on gender and age grouping. Second, a principal component analysis was conducted for data reduction and construct development.
The identified constructs were then used to examine differences between
the age level groupings of students with ASD.
RESULTS
Descriptive Analyses
See Table 1 for demographic data for the participants. Of the 60 respondents,
child chronological age ranged between 3 and 22 years, with a mean age of
10.5 years. Participants were classified into three groups: (a) 3–7 years old
(n = 22, 36.7%), (b) 8–13 years old (n = 23, 38.3%), and (c) 14–22 years
old (n = 15, 25%) in order to analyze patterns of common fears within early
childhood, elementary and middle school years, and high school through
young adulthood. The sample also included 49 males (82%) and 11 females
(18%), and the most common comorbid psychiatric disorder reported was
an anxiety disorder (6 of the 60 participants). Additionally, respondents
reported intelligence levels for their child with 25 (41.7%) reporting average or above average cognitive abilities, 7 (11.7%) indicating their child had
mild intellectual disability, and 28 (47%) reported that they did not know
their child’s intellectual abilities. Due to the large amount of missing data on
intellectual abilities, and disproportionate gender groupings in the current
sample, statistical analyses were only conducted for the age group as the
independent variable for the multivariate analyses.
Open-ended questions. As can be seen in Table 2, 57 of the 60 participants responded to the open-ended question asking parents to describe (a)
TABLE 1 Demographic Information for the Participants
Mean age
Female
(years)
participants Male participants
11 (range
3–22)
11 (18%)
49 (82%)
Comorbid psychiatric
disorders
Anxiety (6)
Attention-deficit
hyperactivity disorder (2)
Clinical depression (2)
Bipolar disorder (1)
Obsessive-compulsive
disorder (1)
Oppositional defiant
disorder (1)
Ethnic
background
European
American (63%)
Hispanic
American (18%)
Asian/Pacific
Islanders (5%)
Mixed ethnicity
(6%)
No answer (8%)
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D. M. Richman et al.
TABLE 2 The Most Common Fears and Child Responses to Fearful Stimuli
Fearful stimuli
Noises
Social situations
Medical
Animal
Isolation
Harmful stimuli
Miscellaneous
Food
Prevalence
Common responses
15/57 = 26%
12/57 = 21%
8/57 = 14%
6/57 = 11%
5/57 = 9%
4/57 = 7%
4/57 = 7%
3/57 = 5%
Panic/Nervousness
Attempts to escape
Negative vocalization
Obsessive behavior
Prevalence
5/13
3/13
3/13
2/13
=
=
=
=
38%
23%
23%
15%
their child’s most severe fear and (b) how their child typically responded
when exposed to the fearful stimuli. The two most commonly reported fears
were (a) loud (e.g., sirens) or idiosyncratic (e.g., toilet flushing) noises and
(b) social situations representing 26% and 21% of the respondents, respectively. Only 13 of the 57 participants who described their child’s most severe
fear also responded to the second part of the question asking them to
describe how their child typically reacts to the fearful stimuli. Caregiver
report of the most common child reactions to the fearful stimuli indicated
(a) visible signs of uneasiness, nervousness, or anxiousness (38%; e.g., trembling, dropping to floor); (b) negative vocalizations (23%; e.g., screaming);
(c) attempt to escape the stimulus (23%; e.g., covering ears, running and
hiding); and (d) obsessive behavior (15%; e.g., repeated asking about what
would happen if a parent died and where the child would go; repeatedly
finding and checking smoke alarms, fire extinguishers, and fire escapes).
Likert responses. All responses to the 122 questions were initially analyzed to determine the items that were rated the most and least feared as
determined by mean scores on the 3-point Likert scale for each question.
This analysis was completed for all respondents and then for each of the
three age groups. Percentage of respondents who indicated an excessive
fear (questions that yielded score of 3) or the absence of fear (Likert score
of 1) negatively affected their child’s quality of life are reported in the parentheses in Table 4. For each descriptive analysis, the 10 most severe and
10 least severe items were identified. If multiple items had the same mean
severity score as the 10th item on the list, all items with that score were
included in the list of most and least severe fears.
Tables 3 and 4 present the results of the descriptive analysis. As seen in
Table 3, of the top 10 fearful items or events across all respondents, medical
or dental fear items were the largest proportion, with 4 of the 10 items.
Loud sounds appear in 2 items (possibly 3 given large crowds are often
associated with loud noises), and unfamiliar events (strangers and doing
something new) also appear. “Eating unfamiliar things” rounded out the top
10. Of the 10 most severe fear items or events, for 5 of them (loud noises,
being in a big crowd, eating food I don’t like, loud sirens, doing something
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Fears in Autism Spectrum Disorder
TABLE 3 Fears Reported Across All Age Groups
Severity
Highest
Lowest
Item or event
M
SD
All 122 questions (N = 60)
Loud noises
Getting a shot from doctor
Being in a big crowd
Eating food I don’t like
Loud sirens
Doing something new
Dentist’s drill
Going to the dentist
Noise of dentist’s drill
Touched by a stranger
Riding on the train
Elevators
Church
Women
Cats
Cemeteries
Report card
Electronic devices
Getting carsick
Small rooms
1.61
2.37
2.28
2.28
2.20
2.15
2.10
1.98
1.97
1.97
1.95
1.22
1.20
1.18
1.17
1.15
1.15
1.15
1.14
1.12
1.07
0.78
0.71
0.78
0.72
0.78
0.76
0.71
0.75
0.76
0.80
0.65
0.49
0.48
0.43
0.38
0.44
0.44
0.40
0.39
0.32
0.25
new) respondents indicated that the severity of the fear decreased the quality
of life of the person with ASD over 85% of the time. For bottom 10 items
(women and cats), fewer than 25% of the respondents reported the absence
of fear put their child with ASD at risk.
Table 4 shows the most and least severe fears by age groups. For the 3to 7-year-old group, medical or dental fears represented 5 of the 10 most
severe fears, with the other 5 items representing several kinds of fears.
Of the 10 most severe fear items, 85% of the respondents for 4 of them
(being in a big crowd, loud noises, having things put in mouth, haircut)
indicated that the severity of the fear decreased the participants’ quality of
life. For the 11 least fearful items, only 3 items (terrorists, bombing attacks,
and lakes) asked a follow-up question about the potential danger of the
absence of fear. Although no respondents felt the absence of fear of bombing attacks put the child with ASD at danger, 25% reported that a lack of
fear of terrorists did, and 62% reported an absence of fear of lakes was
dangerous.
For children in the 8–13 age group, only 2 medical or dental fears
appeared in the top 10 fear items (getting a shot, finger prick), whereas
the other 8 items represented several kinds of fears. Of the 10 most severe
fears, for 3 of them (being in a big crowd, eating food they don’t like, doing
something new) 100% of the respondents indicated that the severity of the
fear decreased their child’s quality of life. Only one other item (loud noises)
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Lowest
Getting carsick
Terrorists (5/20 = 25%)
Riding on the train
Bombing attacks (0/1 = 0%)
Church
Going to the dentist
(6/9 = 67%)
Noise of dentist’s drill
(8/11 = 73%)
Getting a cut or injury
(3/6 = 50%)
Dentist’s drill (8/10 = 80%)
Things put in mouth
(7/8 = 88%)
Getting a haircut
(9/10 = 90%)
2.13 (.69)
2.13 (.69)
Bee sting (3/7 = 43%)
Finger prick (3/7 = 43%)
Burglar breaking in
(3/7 = 43%)
2.14 (.89)
2.14 (.77)
2.09 (.92)
1.09
1.09
1.09
1.09
1.09
(.29)
(.29)
(.29)
(.29)
(.29)
Cemeteries
Church
Lizards (2/17 = 18%)
Cats (2/19 = 11%)
Report cards
2.17 (.78)
1.26
1.26
1.22
1.22
1.22
(.54)
(.49)
(.42)
(.52)
(.52)
2.09 (.74)
2.26 (.69)
2.14 (.64)
2.18 (.91)
2.26 (.75)
Food I don’t like
(10/10 = 100%)
Something new
(9/9 = 100%)
Carnival rides (2/9 = 22%)
2.18 (.80)
2.30 (.63)
2.39 (.67)
2.35 (.76)
Loud sirens (6/11 = 54%)
Shot from doctor
(7/13 = 54%)
Big crowd (9/9 = 100%)
2.41 (.73)
2.41 (.80)
2.36 (.66)
2.52 (.67)
Loud noises (10/13 = 77%)
1.72 (.78)
M (SD)
2.64 (.66)
Shot from doctor
(6/16 = 37%)
Big crowd (12/12 = 100%)
Food I don’t like
(10/12 = 83%)
Loud noises (10/10 = 100%)
8–13 years (n = 23)
Highest
M (SD)
1.55 (.83)
3–7 years (n = 22)
All 122 items
Severity
TABLE 4 Fears Reported by Age Group
Mean-looking dogs
(1/4 = 25%)
Doing something new
(4/4 = 100%)
Making mistakes (2/2 = 100%)
Giving an oral report
(4/5 = 80%)
Being laughed at
(3/3 = 100%)
Walking in crowds
(3/3 = 100%)
Criticism (2/2 = 100%)
Standing in a crowd
(2/2 = 100%)
Sharp objects (2/12 = 100%)
Bats or birds (1/12 = 8%)
Ants or beetles (3/13 = 23%)
Cemeteries
Mystery movies
Touched by a stranger
(1/3 = 33%)
Being teased (4/4 = 100%)
Big crowd (5/5 = 100%)
Loud sirens (1/3 = 33%)
Loud noises (5/6 = 83%)
14–22 years (n = 15)
1.20
1.20
1.20
1.20
1.20
(.41)
(.41)
(.56)
(.56)
(.56)
1.87 (.64)
1.87 (.64)
1.87 (.74)
1.87 (.74)
1.87 (.64)
1.87 (.92)
1.93 (.80)
1.93 (.80)
2.00 (.76)
2.00 (.65)
2.07 (.80)
2.00 (.65)
2.13 (.83)
1.51 (.66)
M (SD)
225
1.09
1.05
1.05
1.05
1.00
1.00
(.29)
(.21)
(.21)
(.21)
(0)
(0)
Elevators
Women (2/18 = 11%)
Electronic devices
Getting carsick
Small rooms
1.22
1.22
1.22
1.17
1.13
(.51)
(.42)
(.52)
(.39)
(.34)
Worms or snails (1/12 = 8%)
Examining mouth
Riding on the train
Church
Talking on the telephone
Escalators (0/12 = 0%)
Running appliances
(2/12 = 17%)
Getting sick at school
(0/12 = 0%)
Women (2/13 = 15%)
Getting carsick
Being left with a sitter
Cats (0/14 = 0%)
Small rooms
Electronic devices
(.41)
(.41)
(.56)
(.56)
(.56)
(.56)
(.41)
1.13
1.07
1.00
1.00
1.00
1.00
(.35)
(.26)
(0)
(0)
(0)
(0)
1.20 (.41)
1.20
1.20
1.20
1.20
1.20
1.20
1.20
Note. Percentages noted in parenthesis ( ) after each item indicate yes responses about follow-up questions on consequences of excessive or absent fears.
Failing a test
Getting poor grades
Small rooms
Lakes (13/21 = 62%)
Cemeteries
Report card
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D. M. Richman et al.
resulted in over 55% of the respondents suggesting that the fear decreased
their child’s quality of life. For the bottom 10 items, only 3 items (lizards,
cats, women) asked a follow-up question about the potential danger of
the absence of fear, and in all 3 cases fewer than 25% of the respondents
reported the absence of fear put the person with ASD at risk.
For adolescents and young adults in the 14–22 age group, 13 items were
included in the most severe fears group. Surprisingly, no medical or dental
fears were ranked as the most severe group, whereas social fears represented
the largest proportion of items (7 of 13). Of the 13 items, for 7 of them (being
in a big crowd, being teased, doing something new, making mistakes, being
laughed at, walking in crowds, criticism, and standing in a crowd) 100%
of the respondents indicated that the severity of the fear decreased their
child’s quality of life. Two other items (loud noises, giving an oral report)
received a rating of 80% or more respondents indicating these fears resulted
in decreased quality of life. For the bottom 19 items, 9 items asked a followup question about the potential danger of the absence of fear, and in all
cases fewer than 25% of the respondents reported the absence of fear put
the person with ASD at risk for harm.
Examining the data across all three age groups, several fear items consistently appeared. First, being in a big crowd and loud noises appeared in
the top 4 most severe fears for all three age groups. Other items appeared
on at least two of the lists (loud sirens, getting a shot, doing something new,
eating nonpreferred food). Across time, medical fears decreased in number
(from 4 to 2 to 0 most severe fears), whereas social fears increased (from
1 to 2 to 7 items). As reported for typically developing children (Evans et al.,
2005; Gullone, 1999, 2000), the overall mean severity score of top fears
decreased across the age groups, with the highest severity item in the oldest
group receiving a score at the bottom of the two younger groups for their
most severe fears. An interesting additional note, however, is that although
the severity scores for older individuals with ASD were lower, more of the
respondents reported that the presence of excessive fear negatively affected
the quality of life for the older individuals with ASD. In other words, even
though the intensity of fear decreased in the older age groups, the negative
consequences on the participants’ quality of life increased.
Principal Component Analysis
A principal component analysis with a Varimax rotation was conducted with
the original 80 FSSC-R items and the additional 42 items created for this
study to establish constructs through data reduction. Similar to analysis of
7 fear factors identified by Evans et al. (2005), eigenvalues for all 7 factors
identified in the current principal component analysis for all 122 rating scale
items exceeded 2.00. Items within factors were retained if their loadings
Fears in Autism Spectrum Disorder
227
were greater than .40 and did not have equal or greater loadings on any
other factor. Additionally, the items that loaded at .40 or above on two or
more constructs were maintained on the construct for which they loaded
the highest and deleted from all other constructs. Items were also removed
if they did not maintain the theoretical integrity of the component (e.g., we
removed “getting car sick” from the Animal factor) and dropping the item
did not lower the eigenvalues below 2.00. Of the 122 items, 71 were retained
to represent the 7-factor model.
Overall, the components were similar to Evans et al. (2005) and
Ollendick (1983) and represented a wide range of fears. The seven principle components represented fears associated with (a) social criticism and
evaluation (e.g., taking tests, being laughed at, being criticized by others;
α = .92), (b) medical or dental (e.g., dentist’s drill, going to the doctor;
α = .91), (c) animals (e.g., rats; α = .85), (d) darkness or death (e.g., cemeteries, dark rooms; α = .85), (e) transportation and public outings (e.g.,
riding the bus, busy malls; α = ..81), (f) heights (e.g., roller coasters or
carnival rides; α = .83), and (g) physical harm or punishment (e.g., not
being able to breathe, getting punished; α = .56), and with the exception
of physical harm or punishment, all components demonstrated strong internal consistency. The total variance accounted for by the seven-factor model
was 56.12% (see Table 5 for item-specific factor loadings). Also, a 10:1 ratio
of observations to variables is generally recommended for factor analytic
procedures, and due to the limited number of respondents and extensive
number of items, these results should be interpreted with caution.
Multivariate Analysis of Variance
In order to examine difference in associated fear factors between the
established age groups, MANOVA was conducted with the seven factors
serving as dependent variables and age group serving as the independent
variable. An overall MANOVA effect (see Table 6) was found for age
grouping (Wilks’s λ = .56, p < .05, partial η2 = .25), and univariate
analyses indicated that the groups differed on Social Criticism or Evaluation
(F = 5.69, p < .05, partial η2 = .17), Medical and Dental (F = 7.08, p < .05,
partial η2 = .20), and Heights (F = 3.50, p < .05, partial η2 = .11). However,
the groups did not differ on Animals (F = 1.39, p > .05, partial η2 = .05),
Darkness or Death (F = 3.02, p > .05, partial η2 = .10), Transportation and
Public Outings (F = 1.45, p > .05, partial η2 = .05), or Physical Harm or
Punishment (F = 1.00, p > .05, partial η2 = .03).
To further examine these differences, a Tukey Post Hoc test was conducted. Analysis for Social Criticism or Evaluation indicated that children
3–7 years old (m = 1.32) reported significantly lower severity of fear
(p < .05) than respondents in the 8- to 13-year-old group (m = 1.73)
228
Eigenvalue
% of variance
Being criticized by others
Looking foolish
Taking tests
Being called on by the teacher
Failing a test
Being teased
Taking a test
Being sent to the principal
Being laughed at
Having to put on a recital
Getting poor grades
Crying in front of others
My parents criticizing
Giving an oral report
Having to go to school
Getting a report card
Making mistakes
Having to stay after school
Someone examining mouth
Having teeth cleaned
Having things put in mouth
Dentist’s drill
Going to the doctor
Going to the dentist
Sight of dentist drilling
Noise of dentist’s drill
11.653
16.185
.806
.803
.792
.730
.729
.720
.693
.675
.648
.613
.586
.582
.576
.566
.526
.504
.476
.449
Social
criticism or
evaluation
.864
.802
.793
.680
.680
.672
.662
.661
9.003
12.504
Medical/
Dental
5.023
6.976
Animals
4.550
6.320
Darkness or
death
TABLE 5 Factor Loading With Varimax Rotation for Reported Fears Across Age Groups
4.068
5.650
Transportation
and public
outing
3.333
4.63
Heights
.466
.413
2.779
3.86
Physical
harm or
punishment
229
Doctor exam
Getting a haircut
Having to go to the hospital
Finger prick
Getting a shot from the doctor
Rats or mice
Insects
Lizards
Worms or snails
Ants or beetles
Snakes
Bats or birds
Strange or mean-looking dogs
Bears or wolves
Getting a bee sting
Going to bed in the dark
Dark places
Dark rooms or closets
Ghosts or spooky things
Being alone
Standing in a crowd
Death or dead people
Cemeteries
Nightmares
Riding on the train
Church
Men
Riding in the car or bus
Women
Being left at home with a sitter
Doing something new
Busy malls
Flying in an airplane
High places like mountains
.440
.411
.644
.623
.566
.555
.493
.740
.736
.695
.687
.672
.667
.619
.535
.510
.477
.792
.778
.730
.628
.561
.498
.494
.474
.463
.743
.720
.676
.662
.616
.555
.523
.435
.429
.447
.448
.414
.781
.414
(Continued)
230
Heights
Falling from high places
Elevators
Roller coaster or carnival rides
Escalators
Choking
Not being able to breathe
Bombing attacks–being invaded
Getting punished by my mother
Getting punished by my father
Having my parents argue
TABLE 5 (Continued)
Social
criticism or
evaluation
Medical/
Dental
Animals
Darkness or
death
.402
Transportation
and public
outing
.739
.731
.668
.495
.491
Heights
.703
.693
.617
.575
.530
.449
Physical
harm or
punishment
231
Fears in Autism Spectrum Disorder
TABLE 6 Multivariate Analysis of Variance With Age Groupings and 7-Factor Structure
Factor
Social criticism or
evaluation
Medical and dental
Animals
Fear of dark or death
Transportation and
public outing
Heights
Physical harm or
punishment
3–7 years
7–13 years
14–22 years
F
Partial η2
1.321 (.090)
1.729 (.088)
1.641 (.109)
5.687∗
.166
2.101
1.418
1.452
1.354
1.843
1.591
1.744
1.498
1.518
1.420
1.489
1.333
(.120)
(.101)
(.110)
(.087)
7.078∗
1.388
3.018
1.446
.199
.046
.096
.048
1.456 (.122)
1.578 (.102)
3.503∗
.998
.109
.034
(.099)
(.083)
(.091)
(.072)
1.364 (.101)
1.500 (.084)
(.097)
(.081)
(.089)
(.071)
1.725 (.098)
1.667 (.083)
Note. Mean (SE).
∗ Indicates age group discrepancies significant at .05 level.
and the 14- to 22-year-old group (m = 1.64). Analysis for Medical and Dental
revealed that the 3- to 7-year-old group (m = 2.10) and the 8- and 13-yearold group (m = 1.85) reported significantly higher severity of fear (p <
.05) than respondents in the 14- to 22-year-old group (m = 1.52). These
results were consistent with findings in the descriptive analysis (increase
in social fears and decrease in more concrete and medical fears over time).
Analysis for Heights indicated that respondents for the 3- to 7-year-old group
(m = 1.36) reported significantly lower severity levels of fear (p < .05) than
respondents for the 8- to 13-year-old group (m = 1.73).
DISCUSSION
Results of this study examining patterns of fears in ASD across early childhood, primary and middle school years, and adolescence/young adulthood
represent the largest quantitative sample published on this topic to date.
At the most basic level, it is interesting to note that responses to open-ended
questions suggested that the most common fears for children and young
adults in this study were (a) loud or idiosyncratic noises and (b) social
situations. This finding matches respondents’ quantitative ratings of severity
across all three age groups with (a) being in a big crowd and (b) loud noises
ranked in the top most severe fears for all three age groups. Across the three
age groups, the types of medical fears decreased in number, whereas social
fears across the three age groups increased. Similar to the findings with
typically developing children (Evans et al., 2005; Gullone, 1999, 2000), the
overall mean severity score of the top fears decreased with age, suggesting that the severity of fears in many individuals with ASD may gradually
decrease as they get older. An interesting additional finding is that although
the severity scores for older individuals with ASD were lower, a greater
232
D. M. Richman et al.
proportion of the respondents reported that the presence of excessive fear
negatively affected the quality of life for the older participants (i.e., 14- to
22-year-olds). Thus, although the severity of fears may decrease throughout
childhood and into early adulthood, the fears that are present may actually
have a greater negative effect on daily life functioning and thus warrant preventive attempts to reduce the probability that the fear will become more
debilitating and restrict vocational and recreational activities.
Another interesting finding was that the principal component analysis,
MANOVA, and follow-up analyses produced similar findings to open-ended
and quantitative descriptive analyses. That is, younger children (3–7 years
old) with ASD showed more severe levels of fear related to (a) medical
and dental procedures and (b) heights, but both of the groups of older
children showed more severe levels of fears centered on social criticisms
and evaluation. These findings suggest that children with ASD may progress
from more concrete fears (heights, injections) to more socially based fears
as they progress through childhood and into young adulthood.
Limitations
The primary limitation of this study is that it is unclear how the participants’
intellectual functioning may have affected the severity and patterns of fears
across the three age groups. Intellectual functioning was only documented
via caregiver report, and 47% of the respondents reported that they did not
know their child’s intellectual functioning level. For the remaining 53% of
the sample, all of the participants were reported to be functioning in the (a)
average to above average or (b) mild intellectual disability range. Thus, it is
quite possible that the convenience sample of 60 individuals with ASD was
heavily loaded with participants with very mild levels of intellectual disability
or typical cognitive functioning, which is not representative of the majority
of individuals with ASD. Similarly, we did not confirm the diagnosis of ASD
for the participants. The parents were recruited from a family contact list for
a research center for autism and it is possible that some of the children may
have been erroneously diagnosed with ASD. A third substantial limitation is
that the principal component analysis data need to be interpreted with caution and viewed as preliminary data due to the small sample size. Although
this is a substantial limitation for the principal component analysis, it should
be noted that the degree of similarity of findings across the open-ended
questions, descriptive analyses, and the MANOVA and follow-up analysis on
the seven factors identified in this study are quite similar to the two other
empirical studies of fears in ASD (Evans et al., 2005; Matson & Love, 1990).
Finally, in order to continue to make progress on documenting patterns of fears across different groups of participants, it will be important that
the FSSC-R be revised to include more contemporary items such as threats
Fears in Autism Spectrum Disorder
233
of terrorism and technology-based fears. Another potential limitation of the
FSSC-R is the 3-point scale used to quantify severity of fear. The narrow
range of available scores both limits caregiver options in scoring and creates
difficulties in statistical analysis of results because the severity scores inherently have little variance (between 1 and 3). A wider range in the Likert
scale may provide a more sensitive measure of fear severity and allow a
more fine-grained analysis of changes in fear severity over time.
Future Research
Although the sample of 60 was the largest sample of ASD to date to be
analyzed for patterns of fear across age cohorts, the sample was a convenience sample from one geographic location (West Texas, United States)
and the range of intellectual functioning was narrow. Future research in
this area should obtain a larger and more geographically diverse sample
with careful documentation and stratification across intellectual functioning
levels and gender and compare the results for individuals with ASD to a
contrast group(s) with matched chronological age and developmental quotients. Although this would be a very costly study that would likely require
external funding to complete, without correcting these sampling limitations,
it is impossible to make broader generalizations of the findings to children
and young adults with ASD.
Additional assessment research on patterns of fears exhibited by people
with ASD across the life span is certainly needed, but future research should
also focus on early identification and treatment of excessive fears in ASD that
decrease quality of life by restricting vocational and recreational options.
If additional research can confirm ASD-specific developmental patterns of
fearful stimuli, it may be possible to incorporate preventative programs
and strategies into educational curriculum or individual support services.
One focus of these early intervention or prevention programs could be on
teaching children with ASD how to identify when they are afraid of certain stimuli, discriminate whether or not there is an actual threat, and then
respond accordingly by tolerating exposure to the fearful but benign stimuli
or appropriately avoid or escape stimuli that are potentially harmful.
Fear should be an adaptive emotional response that helps individuals with ASD avoid or escape dangerous situations. From an operant
and respondent conditioning conceptual framework, the exaggerated physiological responses (e.g., increased heart rate and rapid breathing) and
hyperawareness associated with fear prepare a person to either escape the
fearful stimulus or defend themselves when presented with a dangerous
situation. Fear can also motivate a person to avoid potentially dangerous situations, and the lack of fear when exposed to dangerous situations
can be maladaptive because it may result in an increased probability of
234
D. M. Richman et al.
getting hurt. Most human responses to fear (e.g., confronting, avoiding, or
escaping) are learned through direct experiences with dangerous or painful
events, observational learning, or rule-governed behavior via vocal descriptions of high-probability consequences between available response options.
Although fear in the presence of threatening stimuli is adaptive and desirable, excessive fear (i.e., fear of nonthreatening stimuli or excessive fear
responses to minimal threats) can interfere with a person’s daily life functioning and quality of life. Previous research suggests that individuals with
ASD are at an increased risk for developing specific phobias and other anxiety disorders (Muris et al., 1998), and the current study’s findings add to this
literature by suggesting that as individuals with ASD grow into adulthood
their excessive fears appear to become more debilitating or the potential
harm from the absence of fear of dangerous stimuli may increase. Early
intervention for excessive fears or the lack of appropriate fear should be a
priority for future intervention research for individuals with ASD.
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fears, phobias and anxieties of children with autism spectrum disorders and
Down syndrome: Chronologically age matched children. Child Psychiatry and
Human Development, 36(1), 3–26.
Gullone, E. (1999). The assessment of normal fear in children and adolescents.
Clinical Child and Family Psychology Review, 2(2), 91–106.
Gullone, E. (2000). The development of normal fear: A century of research. Clinical
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Klin, A., Pauls, R., Schultz, R., & Volkmar, F. (2005). Three diagnostic approaches
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Matson, J. L., & Love, S. R. (1990). A comparison of parent-reported fear for autistic
and nonhandicapped age-matched children and youth. Journal of Intellectual
and Developmental Disability, 16(4), 349–357.
Mills, R., & Wing, L. (2005). Researching interventions in ASD and priorities for
research: Surveying the membership of the NAS. London, UK: National Autistic
Society.
Muris, P., Steernemen, P., Merkelbach, H., Holdrinet, I., & Meesters, C. (1998).
Comorbid anxiety symptoms in children with pervasive developmental disorders. Journal of Anxiety Disorders, 12, 387–393.
Ollendick, T. H. (1983). Reliability and validity of the revised fear survey schedule
for children (FSSC-R). Behavior, Research, and Therapy, 21(6), 685–692.
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235
Fears in Autism Spectrum Disorder
APPENDIX
SURVEY ITEMS ADDED TO THE FEAR SURVEY SCHEDULE FOR
CHILDREN-REVISED (FSSC-R) FOR THIS STUDY
81.
82.
83.
84.
85.
86.
87.
88.
89.
90.
91.
92.
93.
94.
95.
96.
97.
98.
99.
100.
101.
102.
103.
104.
105.
106.
107.
108.
109.
110.
111.
112.
113.
114.
115.
116.
117.
118.
119.
120.
121.
122.
Loud noises . . . . . . . . . . . . .
Being laughed at . . . . . . . . . . . .
Getting a shot. . . . . . . . . . . . .
Someone examining mouth . . . . . . .
Having to open mouth . . . . . . . . .
Being touched by a stranger . . . . . . .
Being looked at . . . . . . . . . . . .
Having teeth cleaned . . . . . . . . . .
Dentist’s drill . . . . . . . . . . . . .
Sight of dentist drilling . . . . . . . . .
Noise of dentist’s drill . . . . . . . . .
Having things put in mouth. . . . . . . .
Crying in front of others . . . . . . . . .
Seeing others cry . . . . . . . . . . .
Getting a haircut . . . . . . . . . . .
Choking . . . . . . . . . . . . .
Sight of blood . . . . . . . . . . . .
Rats . . . . . . . . . . . . .
Ghosts . . . . . . . . . . . . .
Being alone . . . . . . . . . . .
Church . . . . . . . . . . . . .
Theaters . . . . . . . . . . . . .
Busy malls . . . . . . . . . . . . .
Walking in crowds . . . . . . . . . .
Heights . . . . . . . . . . . . .
Escalators . . . . . . . . . . . . .
Small rooms . . . . . . . . . . . .
Burglars . . . . . . . . . . . . .
Finger prick . . . . . . . . . . . . .
Doctor exams. . . .. . . . . . . . .
Taking tests . . . . . . . . . . . . .
Meeting a new person . . . . . . . .
Other children . . . . . . . . . . .
Pools . . . . . . . . . . . . .
Insects . . . . . . . . . . . . .
Lakes . . . . . . . . . . .
Dark places . . . . . . . . . . . . .
Women . . . . . . . . . . . . .
Men . . . . . . . . . . . . .
Electronic devices . .. . . . . . . . .
Running appliances . . . . . . . . .
Standing in a crowd . . . . . . . . .
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
None
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
Some
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
A lot
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A lot
A lot
A lot
A lot
A lot