Responses Relating to Category 2, Theme 1: Teachers who Understood and Accommodated Sensory Sensitivities (Adult Participants) Age 18-24 (n=5) 25-34 (n=5) 35-44 (n=9) 45-54 (n=2) 55-64 (n=3) 0 0 1 (11%) 0 1 (33%) Location Australia (n=7) United States of America (n=8) United Kingdom (n=3) Canada (n=3) Europe (n=3) 1 (14%) 1 (13%) `0 0 0 A parent participant noted that it helped her/his daughter when teachers allowed her to listen to music through headphones while working to assist her concentration. Another parent explained that her/his daughter cannot tolerate the beach due to her sensory sensitivities, and that this issue was accommodated on a school camp by ensuring she did not have to participate in any activities on the sand. An adult participant provided the following example of how her sensory sensitivities were accommodated: One of the few teachers that was nice to me would let me sit in his room and be alone in the quiet to calm down…one teacher allowed me to draw in his classroom during lunch time, I didn’t like the bustle and noise of the lunch room (Adult Participant 23, Question 2). Although in the following example, no specific accommodations were made for the female student with AS, an adult participant expressed her gratitude to her former teachers for the classroom environments she experienced: “I would firstly thank them for providing me with a quiet, mostly distraction-free environment in which to learn” (Adult Participant 7, Question 7).
Responses Relating to Category 4, Theme 2: The Experiences of Feeling Different and Not Fitting in are Common Among Female Students with AS (Parent Participants) Age 6-9 (n=2) 10-13 (n=3) 14-17 (n=3) 0 0 3 (100%) Location Australia (n=5) United States of America (n=1) United Kingdom (n=1) Canada (n=1) 2 (40%) 1 (100%) 0 0 Among the adult participants, this theme was discussed in 14 (58%) of the surveys. It was described by participants in all age groups, and from all locations. Table 4.28 presents the age groups and locations of adult participants who discussed this theme. Table 4.28 Responses Relating to Category 4, 2: The Experiences of Feeling Different and Not Fitting in are Common Among Female Students with AS (Adult Participants) Age 18-24 (n=5) 25-34 (n=5) 35-44 (n=9) 45-54 (n=2) 55-64 (n=3) 3 (60%) 4 (80%) 4 (44%) 2 (100%) 1 (33%) Location Australia (n=7) United States of America (n=8) United Kingdom (n=3) Canada (n=3) Europe (n=3) 3 (47%) 7 (88%) 1 (33%) 2 (67%) 1 (33%) Participants described in detail the experiences which they or their daughters with AS had regarding not fitting in at school, and feeling different; for example: “I always felt very different in school like I was somehow ‘other’ and didn’t belong” (Adult Participant 23, Question 6). Some participants provided comprehensive
Appendix A: Summary of Articles Reviewed Article reference Aim/Research Questions Participants Summary of Procedure Results/Conclusion Barnhill (2001) Examined the relationship between depressive symptoms and the social attributions of adolescents with AS 33 adolescents with AS (30 male, 3 female) The following instruments were administered to participants: (1) Student Social Attribution Scale (SSAS, Bell & McCallum, 1995), (2) Children’s Depression Inventory(CDI, Kovacs, 1992) A positive correlation was found between attributing social failure to ability, and depressive symptoms Barnhill (2007) Addressed areas associated with adulthood AS N/A Explored current literature on adults with AS Adults with AS experiences difficulties in the following areas: mental health, employment, social
cognition, and neurological and sensory issues Bauminger & Shulman (2003) To compare the development and maintenance of friendships of children with HFA to typically developing children Mother of 28 children (14 HFA, 14 typically developing) -12 boys and 2 girls per group Home visits from first author. Mothers completed demographic questionnaire and Childhood Friendship Survey (Buysse, 1991) The friendships of children with HFA rarely emerged spontaneously (without the influence of parents/teachers) and were of less longevity than of typically developing children. Children with HFA also socialised with their friends less than typically developing children Begeer et al. (2013) Examined sex differences in the timing of identification of ASD 2, 275 children (0-18) and adults (18-85) with ASD (1843 male, 432 female) Participants completed questionnaire developed by Dutch National Autism Society. Surveys completed by parents, next of kin, or individuals with ASD Child participants: AS identified in females later than males, but no delay for PDD-NOS or AD Adult Participants: delay in AD diagnosis in females, but no delay for AS or PDD-NOS Berkman et al. (2007) Examined factors associated with outcomes among individuals diagnosed with N/A Search of electronic databases from September 1980-September 2005 When compared to control groups, individuals who had Anorexia
Carrington et al. (2003b) To investigate the perceptions of friendship among adolescents with AS Five adolescents with AS (4 male, 1 female) Semi-structured interviews Key findings: (1) participants had difficulty describing what a friend is, (2) participants has less difficulty describing characteristics not associated with a friend, and (3) the researchers observed evidence of masquerading from participants to conceal social deficits. Carter (2009) To measure the frequency of bullying children and adolescents with AS 34 parents of children with AS aged between 5 and 21. 88% of children reported on were male, 12% were female. Participants were mailed the following surveys: (1) Juvenile Victimization Questionnaire (JVQ, Hamby & Finkelhor, 2009) (2) An instrument with three shunning items (Little, 2002) 65% of parents reported their child had been victimised by peers over the past year. Church et al. (2000) To explore the social, behavioural and academic experiences of children with AS 40 children with AS between 5 and 15 (39 males, 1 female) Retrospective chart review of children diagnosed with AS between 1986 and 1998 Social skills remained the greatest challenge for children with AS
Children with AS face the challenge of “looking normal” and having their challenges and behaviour misunderstood Fombonne (2003) Review of epidemiological studies of PDD’s, including AS N/A Review of 32 surveys published between 1966 and 2001 Prediction of 42.7% increase in children under 5 diagnosed with a PDD by 2050 (USA) Improved awareness of PDD’s may explain increases in diagnosis over time Autism is overrepresented among males Hill & Bird (2006) To compare the executive function of individuals with AS to controls 44 participants (22 with AS, 22 controls. (AS: 16 males, 6 females) (Controls: 14 males, 8 females) Tests of executive functioning Measure of autistic symptoms Significant executive dysfunction was found in participants with AS
Test of verbal and non-verbal communication Humphrey & Lewis (2008) To explore the and everyday experiences of students with AS in mainstream schools, and to identify teaching practices which facilitate or constrain learning and participation of students with AS 20 secondary school students with AS (gender not stated, although only male participants are mentioned) Semi-structured interviews, student diaries and student drawings An awareness of being “different” or “not normal” was a recurring theme Teasing and bullying was experienced regularly Anxiety and stress were common Kalyva (2009) To compare the eating attitudes of adolescent females with AS to typically developing females 56 female adolescents with AS and 56 typically developing controls (and the mothers of the adolescents) Participants (adolescents and mothers) completed the EAT-26 (Garner et al., 1982) 26.8% of the AS group were at risk of developing an eating disorder, in comparison to 7.1% of the control group Kopp & Gillberg (1992) Could the social deficits associated with autism be more common in females 6 female children with Autism, with IQ’s ranging from 60-100 6 case histories reported None of the female children with Autism received a diagnosis prior to the age of 6 despite
characteristics (age, gender, diagnosis) with peer victimisation AS and age were positively correlated with all peer shunning variables on the JVQ Mandy et al. (2012) To investigate the presence and stability of sex differences in individuals with ASD through childhood and adolescence 325 children aged between 3 and 18 (273 males, 52 females) AD: 97 males, 16 females AS: 81 males, 13 females PDD-NOS: 95 males, 23 females The following measures were used: Developmental Dimensional and Diagnostic Interview (3Di ) : Semi-structured parent interview administered by child psychiatrist or psychologist Autism Diagnostic Observational Schedule (ADOS, Lord et al., 2000): Semi-structured A distinct female prototype for ASD was found: Based on direct observation and parent reports, females demonstrated less repetitive and stereotyped behaviours compared to males Females had superior fine motor skills Females were reported by parents to have more emotional problems, compared with males, who were reported by teachers to have more externalising
observational assessment Strengths and Difficulties Questionnaire (SDQ, Goodman, 1997): Completed by parents and teachers Picture Vocabulary Scale (Dunn et al., 1892) Wechsler Abbreviated Scale of Intelligence (Wechsler, 1999) Wechsler Intelligence Scale for Children-3rd ed (Wechsler et al., 1991) and interpersonal problems. It was concluded that the milder presentation and less obvious and severe difficulties at school contributes to the under diagnosis in females.
Wechsler Intelligence Scale for Children-4th ed (Wechsler, 2003) Martins et al. (2008) To compare the feeding and eating behaviours of children with ASD and typically developing children 41 children with ASD (83% male, 17% female) and 14 siblings 41 typically developing controls (56% male, 44% female) Mothers completed questionnaires Mothers completed the following measures: Eating Behaviours Questionnaire (Martins et al., 2008) Behavioural Pediatric Feeding Assessment Scale (BPFAS, Crist & Napier-Phillips, Children with ASD were more likely to demonstrate problematic feeding and eating behaviours, although the rates of ritualistic feeding behaviours were consistent in all three groups.
Shtayermman (2008) To examine the level of suicidal ideation, Major Depressive Disorder and Generalised Anxiety Disorder among adolescents and young adults with AS 10 adolescents and young adults with AS (9 males, 1 female) and their parents Measures completed by adolescents/young adults with AS and their parents Measures used: Suicidal Ideation Questionnaire (Reynolds, 1991) Patient Health Questionnaire for Adolescents (PHQ-A, Johnson, Harris, Spitzer & Williams, 2002) Krug Asperger’s Disorder Index (KADI, Krug & Arick, 2003) 50% experienced clinically significant suicidal ideation 20% met criteria for Major Depressive Disorder 30% met criteria for Generalised Anxiety Disorder Sofronoff et al. (2011) Evaluate factors predict bullying among Parents of 133 children with AS aged between Parents Completed the following measures Social vulnerability distinguishes children with
Wainscot et al. (2008) How do students with AS/HFA the school day, in and out of class? do students with AS/HFA spend recess and lunch? How much do students with AS/HFA enjoy lessons and school, and is this reflected in attendance? How do students with AS/HFA perceive their friendships, and do they feel they are bullied? 57 students aged between 11-18 years (55 male, 2 female) (30 AS/HFA, 27 controls) Semi-structured interview at the end of the school day Participants wore pedometers for the day to track physical activity Students with AS/HFA had social interactions Students with AS/HFA preferred to spend recess and lunch in quiet areas with adult supervision Students with AS/HFA reported having friends, and were more likely to be bullied Students with AS/HFA were less physically active Students with AS/HFA had good attendence
How physically active are students with AS/HFA? Whitehouse et al. (2009) Investigated the relationship between friendship, loneliness and depression adolescents with AS 35 adolescents with AS (28 males, 7 females) 35 typically developing adolescents (29 males, 6 females) Participants completed four questionnaires: (1)Friendship Quality Questionnaire (FQQ, Parker & Asher, 1993) (2)Friendship Motivation Questionnaire (FMQ, Richard & Schneider, 2005) (3) Centre for Epidemiological Studies Depression Version Weissman, Orvaschel & Padian, 1980) (4)De Jong-Gierveld Loneliness (De Students with AS had higher levels of depressive symptoms For students with AS, loneliness was negatively correlated with friendship quality In students with AS, loneliness was predicted by friendships with high levels of conflict and betrayal Depression is related to poor friendship quality among adolescents with AS
& Kamphuis, 1985) Whiteley et al. (2010) To ascertain male: female ratio for PDD sub-groups (Autism, ASD and AS) 1963 children Autism 460 (males 399, females, 61) ASD 1137 (males 992, females 148) AS 366 (males 338, females 28) Parent Report Questionnaire Higher male to female ratios were found than has been previously reported: PDD collectively: 7.38:1 Autism: 6.54:1 ASD: 6.84:1 AS: 12.07:1 Wilkinson (2008) Discussed possible explanation for late and missed diagnosis of females with AS N/A Discussion of case vignette to demonstrate gender differences in AS, and how this impacts timely diagnosis and understanding of AS in females Females with AS are diagnosed later, and less frequently than males due to a milder presentation
Human Research Ethics Committee approved the Amendment to the above project on 13/6/2013. Yours sincerely Appendix E: Adult Survey Where do you live? _____________ Country ___________ State/Province (e.g. Tasmania, Australia) How old are you? ___________ Think about your experiences throughout school. In your opinion, what were the most significant challenges you faced which you believe were related to Asperger’s syndrome? In other words, how did Asperger’s syndrome affect your experiences in school? Think about your experiences in the classroom. Please describe some things which your teachers did (or did not do) which you believe were beneficial to your school experiences. Think about your experiences in the classroom. Please describe some things which your teachers did (or did not do) which you believe were not beneficial to your school experiences. Thinking back to your time at school, how you describe your peer relationships and social experiences? Think about your academic experiences at school. In your opinion, what were your strengths and weaknesses? What were your favourite subjects and why? What were your least favourite subjects and why? How would you describe your overall academic performance? Thinking back to your time at school, what are some of the emotions you can remember experiencing in relation to school? In what specific situations at school did you experience particular emotions? Imagine you are discussing Asperger’s syndrome and your school experiences with a group of teachers. Thinking back to your time at