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] 215 216 D. M. Richman et al. 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). 218 D. M. Richman et al. 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 220 D. M. Richman et al. 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%) 222 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 223 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) 224 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 226 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. REFERENCES Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Evans, D. W., Canavera, K., Kleinpeter, F. L., Maccubbin, E., & Taga, K. (2005). The 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 Psychology Review, 20(4), 429–451. Klin, A., Pauls, R., Schultz, R., & Volkmar, F. (2005). Three diagnostic approaches to Asperger syndrome: Implications for research. Journal of Autism and Developmental Disorders, 35, 221–234. 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. Wood, J. J. & Gadow, K. D. (2010). Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clinical Psychology: Science and Practice, 17(4), 281–292. 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 A lot A lot A lot A lot A lot A lot A lot
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