Autism and Girls Volume 2

Research Bulletin Issue No. 20 2 Middletown Centre for Autism Autism and Girls Volume 2 3

Contents

Introduction 5

Interview with Dr Judith Gould 6

Research Articles Summarised

1. Pre-School Children with Suspected Autism Spectrum Disorders: Do Girls and 12 Boys have the Same Profiles? 2. Girls on the Autism Spectrum in the Classroom: Hidden Difficulties and How to Help. 14 3. Promoting Peer Acceptance for Female Pupils with Autism within a Mainstream 16 Education Setting. 4. Sex Differences in the Timing of Identification among Children and Adults with 18 Autism Spectrum Disorders. 5. Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with 20 Autism Spectrum Disorder. 6 Sex differences in type of restricted/repetitive behaviours 22 7. Autism Symptoms and Internalizing Psychopathology in Girls and Boys with 23 Autism Spectrum Disorders. 8. ASD in Females: Are We Overstating the Gender Differences in Diagnosis 25 9. Sex Differences in Autism Spectrum Disorder: Evidence from a Large Sample of 28 Children and Adolescents. 10. Generalized Effects of Social Stories with Task Analysis for Teaching Menstrual 30 Care to Three Young Girls with Autism. 11. Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism 34 Spectrum Disorders during Adolescence.

Conclusion 38 4 Middletown Centre for Autism Autism and Girls Volume 2 5

INTRODUCTION

This is the twentieth Research Bulletin produced Psychiatry Unit and was a Senior Lecturer at the by Middletown Centre for Autism and it provides Institute of Psychiatry, University of London. summaries of ten articles spanning from 2011- She has also worked as a Clinical Psychologist 2015. The articles address the area of autism and within both health and social services. She has girls from a range of perspectives using both published widely in the field of autism spectrum qualitative and quantitative research methods. disorders. Her current interest is the diagnosis of The Bulletin commences with an interview with women and girls on the spectrum. Dr Judith Gould BSc, MPhil, PhD, AFBPsS, CPsychol. A Consultant Clinical Psychologist. Please note that the views represented in this document Dr Gould, is the Lead Consultant at the Lorna do not necessarily reflect the views of Middletown Wing Centre for Autism and retired as Director Centre for Autism. Reviewers have, where possible, of the Centre in 2015. She is a Chartered used the original language of the article, which may Consultant Clinical Psychologist, with over 40 differ from UK and Ireland usage and the usage of a years’ experience, specialising in autism spectrum range of terminologies for autism. disorders and learning disabilities. Before being the Director of The Lorna Wing Centre she worked as a member of the scientific staff of the Medical Research Council Social 6 Middletown Centre for Autism Autism and Girls Volume 2 7

AN INTERVIEW WITH DR JUDITH GOULD

1. Are we getting better at diagnosing girls? The personal accounts from the women have In primary school girls on the spectrum may The first conference in the UK on Women and dramatically changed our thinking. Reading ‘get by’ and are supported by their peers. Parents Girls was in 2008. It was brought to our attention autobiographies, blogs and watching YouTube may engineer or organise friendships for their that women and girls were not being diagnosed, videos made by women have given us much greater daughters. Social difficulties become more often resulting in mental health problems. insight into the way their autism is manifested. obvious in adolescence at secondary school. Taking note of bullying is important. Following this we had many more referrals to 3. We are learning so much about autism Schools need staff who are trained to recognise the Lorna Wing Centre for diagnosis of women from women, Rudi Simone, Liane the needs of students on the autism spectrum and and girls. With more research and awareness Holliday Willey, Ros Blackburn and of especially the more subtle presentations in girls. of the different profiles for men and women we course Temple Grandin. What do you A timely diagnosis can avoid many of the are getting better at diagnosing this condition. think makes it easier for them to difficulties women and girls on the spectrum However, the current International Diagnostic explain and discuss their autism? experience throughout their lives. A diagnosis Criteria still do not give examples of the types For this reason we have learned so much more gives access to appropriate support and of difficulties and activities experienced by girls about the female presentation of autism. understanding from those who offer early and women. It is important to take a much wider What can be more appropriate than first- intervention services. perspective regarding the social, communication hand information about what it is like to have and imagination dimensions in addition to the 5. Have you noticed a difference in the autism? As a professional you can speculate special interests and rigidity of behaviour. Girls ‘special interest’ or as Ros Blackburn and hypothesise about patterns of behaviour and women are skilled at learning how to act in but cannot experience real life situations. In says ‘rip roaring obsessions’ of girls social settings. Unenlightened diagnosticians my clinical work, talking to females about their with autism from boys? perceive someone who appears able, has lives has given me insight into the world of Yes there are differences in special interests. reciprocal conversation and who uses appropriate autism. The books written are so helpful and A common interest in females relates to animals, affect and gestures as not meeting the criteria set are recommended reading for newly diagnosed whereas males tend to be more fascinated by out in the International classification systems. females and their families. more technical related subjects. Boys tend to Therefore, a diagnosis can be missed. collect factual information about non-social 2. Is this down to greater information 4. What more can we do to identify girls activities, whereas the girls collect information and research? earlier, so that they can avail of early about people. These interests are often similar intervention services? to those of typically developing girls and are There are now many more papers published on Listen to parents, recognise that the girls are therefore not seen as unusual. It is not the special gender differences in autism which highlight that interests that differentiate them from their peers females with ASD may not exhibit behaviours to excellent at masking their symptoms. They often behave differently in different settings. but the quality and intensity of these interests and the same degree as males. In the past there has the length of time spent on these. It is essential been an expectation that autism is more common Gathering information and taking an appropriate developmental history is essential. It may be only that we move away from the male stereotype of in males than females. This is now recognised what constitutes special interests and explore the not be the case which is backed up by research when the child begins formal education that the autism becomes apparent. Being able to recognise intensity and duration of the activities engaged in evidence. Information sharing in conferences and by girls. Girls often become fixated on people who published papers are beginning to change the the often subtle problems can be difficult for an inexperienced clinician. may be real, historical or imagined. It is important thinking about diagnosis in females. to explore the underlying reasons for the interests as imaginary characters may often be linked with a particular play, book or movie the young person has seen or read about. 8 Middletown Centre for Autism Autism and Girls Volume 2 9

6. Would you say that girls devise social 7. There is growing understanding of 8. Is there any practical advice you would copying mechanisms, based on their how autism impacts or displays give to professionals and parents in ability to imitate the socially appropriate differently in women and girls. What supporting women and girls on the intersections of their peers, which in do you feel are the differences, do you autism spectrum that differs from fact mean that their difference and see them as subtle? men/boys? difficulties can go unnoticed in a busy The core difficulties are not gender specific, There are books written by parents of girls on classroom or environment? that is all individuals on the autism spectrum the autism spectrum which are both useful and This is the skill possessed by the girls. They are have problems in social interaction, social informative. That said, the essential guidelines for able to cope with social situations by masking, communication and social imagination, together supporting boys and girls are basically the same. observing and copying others. They learn with a rigid, repetitive pattern of behaviour but However, as the girls are often not as obvious social skills through their intellect rather than we are now aware the behaviour and skills in girls regarding overtly challenging behaviour as the by instinct or social intuition. Often the girls manifest themselves in different ways from boys. boys we need to be mindful of their equally are passive in their social presentation and are This, of course in some ways is a generalisation different ways of responding to their typically happier when under the radar. They may not ask as there are some girls who behave in a more developing peers. The boys tend to externalise for help and avoid being the centre of attention. ‘tomboy manner’. their social problems more readily than females However, some girls excel in role play and drama The outward presentation of clothing or toy and are, therefore, more likely to be identified as but often due to their perfectionism will only choice does not necessarily represent the internal needing support in the classroom. accept a lead role and can be controlling in their cognitive profile. Gender identity in childhood It is important for parents to be aware that their activities. is complex. Many individuals do not think daughters have learned coping strategies and are It is correct that by copying others, professionals diametrically, that is male or female, but show more motivated to do so throughout their lives in do not pick up their social and communication more gender neutral behaviour. Up to now there order to appear more socially typical. Also they problems. This mimicking and repression of has not been a great deal of research into gender- are more likely to have a desire to please. Parents their autistic behaviour is exhausting both differentiated behaviour manifestations but this is and teachers need to be alert, particularly in mentally and physically. It is not surprising then an area of great interest. adolescence when the girls may become depressed that they behave impeccably at school and then or withdrawn. At this time they become more have complete meltdowns in their safe home aware of their differences from their peers. Often environment. This needs to be highlighted for all the gap between their intellectual abilities differs those working in mainstream education. from what they can achieve in their day-to-day life. This gap increases with age. Many of the Schools need to recognise that it is in the girls have very low self-esteem and this coupled social domain that the girls on the spectrum with their perfectionism makes them extremely struggle most. vulnerable to social exploitation. Life is hard for all adolescents but it particularly hard for girls on the autism spectrum. We have learned through our clinical work that spending time asking the girls about their views can shed light on how they are struggling to understand the social complexities of life. 10 Middletown Centre for Autism Autism and Girls Volume 2 11

9. Are the autism assessment tools used There are screening tests for parents to support In our referrals to the Lorna Wing Centre, There is now a growing interest in the diagnosis in the diagnostic process a good fit identification of girls with autism. The questions individuals have often been seen and for of girls and women on the autism spectrum with for females? focus on specifically female presentations of whatever reason, have not been given a definite an increasing number of papers on this topic. As mentioned, the current international autism. However, this type of assessment should diagnosis. They have been referred with mental In the past, based on my clinical experience, diagnostic criteria do not give examples of only be used as part of a broader diagnostic health problems with varying diagnoses such as girls were rarely diagnosed and the majority of the types of difficulties experienced by girls assessment. Similarly only using an observational eating disorders, obsessive compulsive disorder, women seen had a late diagnosis. This is probably and women. The autism assessment tools are assessment without taking a full developmental personality disorders, selective mutism, anxiety changing due to our increased awareness of the based on the classification systems. If clinicians history can miss a diagnosis in girls. Within a and depression. More recently, younger girls ways girls and women present in their difficulties continue to use the narrow definitions set out formal structured setting the girls are able to mask have been referred where their mothers have and strengths. in the classification systems and do not have their symptoms and appear to be more socially recognised the problems they have experienced A timely diagnosis can avoid many of the the experience of working with girls, then the able than in real-life settings. themselves and do not wish their daughters to go difficulties women and girls on the autism girls will be missed. It is very important to through the same difficulties. These mothers have spectrum experience throughout their lives. 10. Does this influence the number who only recently received a diagnosis for themselves. take a holistic view when considering all the go through the assessment process and It is never too late to receive an understanding of developmental disorders including autism. do not get a diagnosis first time round? 11. Are there statistics in relation to the life’s experiences, which then enables the person Describing an individual’s pattern of skills and number of females who do not get a to get the support needed to maximise their difficulties along the developmental domains Girls with a learning disability and a language delay are more likely to be picked up at an early diagnosis on foot of the first potential and address their emotional well-being. can not only give a diagnosis but also, more assessment (maybe in early years) but importantly, a detailed profile of the person. A age. Girls who are intellectually able with good do go on to receive a diagnosis later in stand-alone diagnosis of autism does not help in language skills are less likely to be picked up in planning for the future needs of an individual. their early years. It is back to clinicians having teenage/adult life? a good understanding of how to interpret the Various surveys have been carried out looking at At the Lorna Wing Centre we use the Diagnostic diagnostic criteria for females. Girls are missed time and age of diagnosis. The conclusions are Interview for Social and Communication if there is not the understanding of the way their that it is more likely that girls receive a later Disorders (DISCO) which is a semi structured autism is manifested. Often girls are thought diagnosis than the boys. However there are many interview which enables a clinician to to be shy, which is less often attributed to boys. men who are more intellectually able who have systematically collect information which not Parents are thought to be over anxious rather than only received a diagnosis later in life. only gives a diagnostic label but also a profile being correct intuitively that their daughter is of the person’s skills and difficulties. During the different. It may take longer to diagnose the girls training of professionals in the use of the DISCO, because of their more subtle social difficulties. emphasis is placed on the different ways in which Sarah Hendrickx in her book ‘Women and Girls behaviour is manifested in females compared with with Autism Spectrum Disorder’ 2015 gives a males. That is the questions relating to autism are clear account of early childhood indicators that the same for males and females but the examples are helpful in alerting professionals about early given for the females will often differ from the diagnosis. males. Due to the complexity of the condition and the very wide ranging and subtle ways in which women and girls present, diagnosis can only be successfully undertaken by an experienced clinician who is able to see and think beyond the lists of criteria in the various classification systems currently available. 12 Middletown Centre for Autism Autism and Girls Volume 2 13

Pre-School Children with Suspected Autism Spectrum Disorders: Do Girls and Boys have the Same Profiles?

BACKGROUND All 40 children underwent a number of RESEARCH FINDINGS Full Reference Previous research has indicated that there are comprehensive neuropsychiatric assessments. The research found that there was no significant Anderson, G.W. (2013). Pre-School Children gender differences in the presentation of autism These were: difference between the girls and boys on any With Suspected Autism Spectrum Disorders: Do spectrum disorders (ASD) among children. • Medical-neurological-psychiatric examination variable tested, i.e. regarding clinical diagnosis Girls and Boys have the Same Profiles? Research in Research has shown that girls with ASD typically of the child. (e.g. atypical autism, Pervasive Developmental Developmental Disabilities, 34, p. 413-422. have more problems with communication, • Child and family medical/psychiatric history Disorder, Asperger Syndrome, etc.), cognitive compared with boys of the same age, but that boys taken from the parent. level, repetitive behaviours, adaptive behaviour, show more repetitive behaviours than girls. This comprehension, expressive language level, ADOS • Griffiths’ Developmental Weschsler Preschool research project aimed to explore the relationship severity score or overall global functioning. There and Primary Scale of Intelligence, third between gender and age at diagnosis at pre-school were strong correlations between results obtained edition. age, given that previously there have been few in different developmental areas across both studies exploring this. • Vineland Adaptive Behaviour Scales. genders. • MacArthur Communicative Development RESEARCH AIMS Inventory. IMPLICATIONS FOR PRACTICE The study set out to examine whether or not pre- • Diagnostic Interview for Social and (by the authors) school girls and boys, less than three years of age, Communication disorders (DISCO-11). • The findings of this research suggest that either have the same clinical, developmental, social and • Pre-school observation. previous studies highlighting clear gender language profiles. The researchers identified three • Autism Diagnostic Observation Schedule differences may have overrated discrepancies main aims, which were to: (ADOS). between boys and girls with autism, or that • Describe the potential differences in a sample • Children’s Global Assessment Scale (CGAS). there may be a number of girls, not yet of young 1-3 year old girls with ASD, and identified in early years ASD screenings, who All test results were then evaluated in relation to compare them with those of age and receive a diagnosis later. The researchers clinical judgement. developmentally matched boys with ASD. suggest that the latter is most likely, suggesting • Analyse the correlation between results All the various assessments were carried out that the screening tools currently used are not obtained in different developmental areas’ test independently of each other and the research identifying all girls with ASD at pre-school age. results, and compare them across genders. clinicians remained blind to the other assessment • Given the relatively small sample size of 40, the results until a consensus diagnostic case • Identify avenues for further research in the researchers highlight the need for more conference was held after all the assessments had field. research to take place before it can be taken place. established that the clinical phenotype is not RESEARCH METHODS different across genders in pre-school children. The study compared the gender differences between 20 girls, aged between one year, eight months and three years, nine months, and 20 boys. The girls were matched with boys for comparison by chronological and developmental age. The children were recruited at autism general population screenings, performed at pre- school age, and had been referred to the Child Neuropsychiatry Clinic (CNC), Gothenburg, for assessment and given a diagnosis of ASD. 14 Middletown Centre for Autism Autism and Girls Volume 2 15

Girls on the Autism Spectrum in the Classroom: Hidden Difficulties and How to Help

BACKGROUND Data was collected through face to face • Feeling misunderstood: Many respondents Full Reference Victoria Honeybourne is a Senior Advisory interviews, emails, online surveys and through discussed feeling misunderstood by both peers Honeybourne, V. (2015). Girls on the Autism Teacher with Speech Language and Facebook groups. Those who were interviewed and staff. Words that were mentioned included Spectrum: Hidden Difficulties and How to Help. Communication Needs. As a teacher of pupils face to face were probed for more detail. Not all ‘shy’, ‘quiet’, ‘overlooked’ and ‘invisible’. Good Autism Practice, 16(2), p. 11-20. with special educational needs and as a woman participants answered every question. Respondents’ suggestions for schools to help pupils feel understood included diagnosed with Asperger’s Syndrome herself, she RESEARCH FINDINGS wanted to explore the educational experiences of • Staff should be patient. girls and women with autism. What were the positive aspects of your school experiences? • Staff should emphasise with the positive aspects of girls’ nature. RESEARCH AIMS • The majority of the participants reported • Staff should give girls with autism time The aim of this study was to investigate how girls experiences such as specific lessons / topics and space. with autism experience the school environment, they excelled in, how they enjoyed following looking at their strengths and difficulties and the rules and being able to remember facts. • Provide counsellors. how they felt school policies, practices and One participant reported: “I found it easy to • Educate the girls about autism. environments could be improved. learn facts and remember things. I loved the • Build confidence and self –esteem. routine of having a timetable.” RESEARCH METHODS IMPLICATIONS FOR PRACTICE What were the negative aspects of your school The 67 participants were all female, with a experiences? (by the authors) diagnosis on the autism spectrum (including • Educators should be mindful of the hidden Asperger’s Syndrome and High Functioning • The participants reported negative experiences with friendship, communication, learning, difficulties girls with autism experience in the Autism). Respondents were between the ages of school setting. 14 and 50+ years. interpreting the world and feeling misunderstood. • Schools should aim to provide an inclusive The participants were asked the following: • Friendship: In almost all cases the participants environment for all pupils with autism. • What were the positive aspects of your school reported feelings of isolation and loneliness • Schools should prioritise developing friendship experiences? (Consider both primary and which in some cases led to depression, self- skills, self- esteem and confidence amongst secondary school, academic and/or harm or school refusal. Many found break and girls with autism. extracurricular areas you enjoyed, your lunch times particularly difficult. strengths, specific events or situations you • Communication: Difficulties were expressed enjoyed.) with speech and written work, group • What were the negative aspects of your school discussion and social communication. experiences? (Again consider both primary • Learning: Several participants said they found and secondary school, any negative impact of school work too easy, others reported they your autism, areas you found especially needed a different way of being taught while difficult.) others said they had their own way of learning. • What advice would you give teachers / • Interpreting the world: Several participants educators / school staff to help them meet the spoke about sensory issues, others commented needs of girls with autism? on how they struggled with authority, others • What advice would you give younger girls with discussed fairness and equality and needing autism to help them make the most of their rules to make sense. Some participants spoke school experience? about the need for routine and structure. 16 Middletown Centre for Autism Autism and Girls Volume 2 17

Promoting Peer Acceptance for Female Pupils with Autism within a Mainstream Education Setting

BACKGROUND All seventh and ninth grade classes were allocated While there was also an increase in positive Individuals with autism experience high levels to a no-intervention, non-peer condition to form a attitudes towards peers with autism within the of peer victimisation and rejection. In Australia, control group. control group, there was no increase in knowledge the Disability Standards for Education Act (2005) The programme involved eight, 50 minute and unexpectedly poorer behavioural intentions. protects the rights of children with a disability sessions and was entitled, ‘Understanding Our to be given the same opportunities as those Peers’. Detailed programme outline is contained IMPLICATIONS FOR PRACTICE without a disability within education and training. in the study’s appendices. Participants were also (by the authors) Increased public awareness and protective asked to complete a web-based online activity • The researchers posit that the findings legislation of this has spread across western after each session as homework. highlight that typically developing pupils do countries and has led to a rise in the number of not possess the knowledge and skills necessary The following measures were used to assess children attending mainstream education. to positively interact with female students with knowledge, attitudes and behavioural intentions This is particularly true for those with a diagnosis autism. of typically developing peers towards females with of High Functioning Autism (HFA) or Asperger’s high functioning autism. • The findings indicate evidence of the efficacy of Syndrome. a peer programme aimed to increase the • The Autism Knowledge Questionnaire-Revised There is, however, a common misunderstanding knowledge, attitudes and behavioural (AKQ-R). that because individuals with HFA are intentions towards female pupils with autism. academically able they can manage effectively • The Adjective Checklist (ACL). Due to the high level of peer rejection reported within inclusive educational environments. • Shared Activities Questionnaire-Revised for pupils with autism within mainstream A lack of evidence, however, suggests that these (SAQ-R). settings (Humphrey & Lewis, 2008) this may children cannot make gains socially within a • Similarity Rating Form-Revised (SRF-R). be an effective tool to promote peer acceptance. mainstream setting without targeted intervention • Perceived Responsibility Questionnaire- or support. Revised (PRQ-R). Full Reference RESEARCH AIM • Student Interaction Questionnaire-Revised Ranson, N.J. and Byrne, M.K. (2014). Promoting (SIQ-R). Peer Acceptance of Females with Higher- The researchers aimed to investigate the effect Measurement was taken before the programme Functioning Autism in a Mainstream Education of a multi-session, peer, anti-stigma programme began, immediately after the session and at follow Setting: A Replication and Extension of the Effects on the knowledge, attitudes and behavioural up, during the next academic term. of an Autism Anti-Stigma Program. Journal of intentions of typically developing peers towards Autism and Developmental Disorders, 44(11), females with high functioning autism. RESEARCH FINDINGS p.2778-2796. Overall the results indicated that the eight session RESEARCH METHOD programme impacted on the knowledge, attitudes Participants consisted of seventh, eighth and and behavioural intentions of typically developing ninth-grade students (N=273). Two eighth peers towards females with high functioning grade classes (N=48) were randomly assigned autism. Specifically peers in the intervention to the intervention condition. The remaining group were found to have more positive attitudes, participants were allocated to a no-intervention knowledge and slightly improved behavioural peer condition (n=56). All participants were intentions towards peers with high functioning female and the median age in the intervention autism. The no-intervention group showed no group was 13, while the median age for the no- change in knowledge, however, the level of change intervention group was 12 years of age. in attitudes in the no-intervention group was equivalent to those who received the intervention. 18 Middletown Centre for Autism Autism and Girls Volume 2 19

Sex Differences in the Timing of Identification among Children and Adults with Autism Spectrum Disorders

BACKGROUND A series of stepwise linear regression analyses IMPLICATIONS FOR PRACTICE Full Reference Autism Spectrum Disorders (ASD) to include were carried out using age of diagnosis as the (by the authors) Beeger, S., Mandell, D., Wijnker-Holmes, B., autism, Asperger’s Syndrome and Pervasive dependent variable in each model. Current age • This study confirms that girls are identified Venderbosch, S., Rem, D., Stekelenburg, F. and Developmental Disorder Not Otherwise Stated was entered first in the model followed by sex later than boys among children with Asperger’s Koot, H.M. (2013). Sex Differences in the Timing (PDD-NOS) have historically had a consistent and then the age where the parents first showed Syndrome but found no such delay for female of Identification among Children and Adults with male predominance ranging from 4:1 among concern. Child and adult groups were analysed children with autism or PDD-NOS. In Autism Spectrum Disorders. Journal of Autism those with autism to 9:1 among those with separately. contrast, in the adult group, females with and Developmental Disorders, 43, p. 1151-1156. Asperger’ Syndrome. Early identification in autism were diagnosed later than males but no terms of a diagnosis is crucial for the overall well- RESEARCH FINDINGS delays were found for female adults with being, the timing of educational interventions Based on all respondents together (child and Asperger’s Syndrome or PDD-NOS. The age at and early treatment and the beginning of adult) the average time between first signs and first parental concern was not related to any family centred care. These can result in better diagnosis was longer for females compared to sex differences. communication skills, lower rates of behaviour males (2.3 years compared to 1.9 years). Due to • The later diagnosis of Asperger’s Syndrome in problems and anxiety and a reduction in stress the influence of adults being diagnosed much girls may be related to the late general timing levels for parents. Previous studies have failed to earlier than the children, the remainder of the of diagnosis in Asperger’s Syndrome, on find sex differences in age of ASD diagnosis but results were stratified into separate child and average at eight years of age, one year later than these studies lacked statistical power and were adult groups where current age was controlled children with PDD-NOS and three years later not based on large scale samples. for in both groups. than children with autism, who were diagnosed on average at around five years of RESEARCH AIMS In the child group, females with Asperger’s Syndrome had a 1.8 year delay in age at diagnosis age. The aim of the study was to examine sex but no gender difference was found for females • More adults in this sample were diagnosed differences in the timing of identification of ASD with autism or PDD-NOS. In the adult group, according to DSM-III which was more specific in males and females using a large European females with autism had a 4.3 year delay in age of than the DSM-III-R. Autistic disorders may cohort. diagnosis but no gender difference was found for have been less suspected in girls decades ago, RESEARCH METHODS females with Asperger’s Syndrome or PDD-NOS. just like Asperger’s Syndrome is suspected less now. In fact with the current DSM-5 Survey data were collected from 2,275 males and There was a wide variation in age at diagnosis in the adult group with 300 diagnosed younger than classification, PDD-NOS and Asperger’s females from the Netherlands during 2012 who Syndrome have been integrated into one had a diagnosis of autism, Asperger’s Syndrome 12 years, 142 diagnosed between 12 and 18 years and 730 diagnosed older than 18 years. Autism Spectrum Disorder making it harder to or PDD-NOS. The sample included children (0- identify gender disparities. Diagnostic 18 years) and adults (18-85 years). Respondents No gender differences were found in the age instruments need to be developed that are were predominantly male (81%) with only 19% of diagnosis of adults when analysed according sensitive to the female presentation of autism. of the respondents being female. Survey data to whether they were diagnosed as children covered all 12 provinces in the Netherlands and (0-12 years), adolescents (12-18 years) or adults the distribution of age, subtypes of ASD and (>18 years). cognitive ability and gender were similar to previous international epidemiological studies. Surveys were completed either by the parents/ next of kin or the individual themselves. Some surveys were excluded due to large amounts of missing data, leaving a sample of 2,084 for analysis. 20 Middletown Centre for Autism Autism and Girls Volume 2 21

Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder

BACKGROUND RESULTS Interest in parts of mechanical objects: girls Strategies used for navigating social situations: Due to the absence of an intellectual impairment, This study used a backward step logistic were rated as having little or no interest in parts The results show that social compensatory girls are quite often diagnosed significantly less regression to determine what group of key early of mechanical objects (girls: 48%; boys:15%), strategies significantly predicted sex. If a than their male counterparts. This study explored signs of autism best predicted sex. It also used whereas boys were most commonly rated as preference for mimicking as a social strategy possible reasons why autism may be more difficult logistic regression equations to calculate the ‘fascinated’, 55% as compared to 26% of girls. was reported the child was over 16 times more to detect in girls based on concerns by the carer predicted odds for each level of all significant Desire to be liked: based on carer perception likely to be a girl; with 37% of girls reported to during the pre-diagnosed period. predictors. girls were more likely to have an unusually strong use mimicking in this study. Mimicking was the Pre-diagnosis concerns for children later diagnosed desire to be liked by peers, almost a quarter of primary strategy for only 10% of boys. RESEARCH AIM with autism: girls (22%) compared to only 10% of boys. Isolating from play or remaining a passive The primary aim of this study was to investigate Parents were asked to report on the very Vocabulary: boys were reported as more likely observer was the primary strategy for 30% of boys whether there were sex differences in carers’ first concern they held for their child, the to present with below average vocabulary (42%) compared to 9% of girls. Engaging in conversation pre-diagnosis concerns for children who most common initial concern for the child’s as compared to girls (28%). Responses indicated with adults was another common strategy for would later receive a diagnosis of autism. Three development was difficulties with behaviour that girls were rated as having above average both girls (24%) and boys (24%). additional secondary aims were to explore (girls: 39.7%; boys: 21.6%). For girls other than vocabulary in the pre-school years (46%). carers’ perspectives on (a) the response received behaviour, parental reports of first concerns were from professionals regarding carer concern, (b) Responses from professionals: evenly distributed across other options. Whereas whether girls engage in social strategies which Responses given by medical professionals did for boys, 21.6% reported medical issues to be their may impact their overt social presentation and (c) not significantly predict sex. Parental responses first concern and 20.5% were first concerned with the types of obsessional interests displayed by girls indicated that 33% of participants experienced language development. versus boys. This study specifically focused on ‘ambivalence/no concern’ as the initial response children who were not diagnosed until school-age In regard to behaviour, responses were coded as from a medical professional, 36% also had in order to explore how these factors may have either externalising (hitting, yelling, controlling another diagnosis queried as the initial response. made it more difficult to detect autism. play) or internalising (withdrawn, avoidance, Timing of teacher concern: remaining passive). Reporting the primary RESEARCH METHOD concern as externalising behaviour was predictive The results showed that reported timing of concern expressed by teachers predicted sex. If Several criteria were identified for participation of being female. it was reported that no teacher ever expressed in this study: the carer was required to have a Within the questionnaire 17 items pertained concern for the child’s development, the child was child who had a current diagnosis of autism, had to concerns commonly seen as early signs of over 13 times more likely to be a girl. Within this no intellectual disability, was diagnosed after autism; exploratory analysis was used to identify sample, no teacher had reportedly ever expressed five years of age and was currently aged between key predictors of sex, of which there were five. concern for the behaviour or development of five and 18 years of age. Out of 187 people who Logistic regressions, controlling for age, identified 25% of the girls. This was rare for boys (7%) with completed the online questionnaire 157 were that four items significantly predict sex: majority of boys (62%) having a teacher report eligible for inclusion. Imitation complexity: over 70% of girls were concern during the pre-school years. Participants completed a 40-item online survey reportedly able to engage in complex imitation comprised of a combination of multiple-choice compared to 34% of boys, based on odd ratios and free-response questions. if the carer reported the child had engaged in complex imitation during the pre-school years they were over five times more likely to be girl rather than a boy. 22 Middletown Centre for Autism Autism and Girls Volume 2 23

Sex differences in type of restricted/ Autism Symptoms and Internalizing repetitive behaviours: Psychopathology in Girls and Boys with Autism Spectrum Disorders

Carers were asked about the most concerning • The study suggests that girls present with fewer BACKGROUND type of obsessions/restricted interest held by the restricted/repetitive behaviours to boys. child during the pre-school years. The results Whereas boys’ early restricted behaviour The literature regarding sex differences and ASD RESEARCH METHOD showed that fascination with wheeled toys was tended to be the non-functional use of wheeled is mixed. Some theorists suggest that being female Seventy six children (aged 8-11yrs) and strongly predictive of being a boy (59%). Very few toys, girls were reportedly more likely to show confers protection against autism traits, inferring adolescents (aged 12-18yrs) participated in this girls reportedly displayed this fascination (5%). obsessional interests with toys or seemingly that females diagnosed with ASD present with study. Four age-matched groups were formed: random objects. It is suggested that girls’ milder symptoms than males with an autism In contrast a strong predictor for girls was interests may be less intense than boys’ which diagnosis. Others have postulated that girls with girls with ASD (n=20); boys with ASD (n=19); fascination with seemingly random objects (33%) may mean they are less disruptive to the family ASD are more severely impaired than boys with typically developing girls (n=19); typically and obsessional/repetitive behaviour with toys and therefore more difficult to detect as a sign ASD. However, not all studies have documented developing boys (n=17). The ASD groups were (39%). In comparison these were rare fixations for of autism. sex differences with some investigators finding matched on IQ. Approximately half of each boys (random: 6%; toys: 14%). group were children and half were adolescents. • A key issue is improving professionals’ comparable levels of impairment in boys and girls Participants could not have a diagnosis of understanding of how symptoms of autism with autism across a range of samples. IMPLICATIONS FOR PRACTICE depression, anxiety disorders, ADHD, Fragile X, may present differently in girls rather than the Research has also demonstrated that levels of (by the authors) Tourette’s or seizure disorders. presence or absence of core symptoms. depression in adolescent females is greater than • The ability to mimic social interactions and that in males. Additionally, young people with attempts to actively connect with peers (e.g. The following Qualification Measures were used: unusually strong desire to be liked) may Full Reference autism demonstrated increased internalising psychopathology relative to typically developing • Weschler Abbreviated Scale of Intelligence complicate the detection of potential deficits in Hiller, R.M., Young, R.L., and Weber, N. (2015). individuals. Therefore, an important issue in the (WASI) was used to provide a short and the girls’ underlying social understanding. Sex Differences in Pre-Diagnosis Concerns for ASD population is whether girls with ASD are at reliable assessment of intelligence. • The researchers were surprised to find that Children Later Diagnosed with Autism Spectrum an elevated risk for affective disorders. • Autism Diagnostic Observation Schedule externalising behaviour was of greater concern Disorder. Autism, p. 1-10. – Generic (ADOS-G) was used to confirm for girls than boys, with externalising RESEARCH AIMS diagnosis. behaviour the main concern reported for half • Social Communication Questionnaire (SCQ): of girls and only a quarter of boys. This finding The primary aims of the current paper were (1) to was completed by participants’ parents to may also reflect that girls’ atypical development investigate whether the clinically-referred high- evaluate communication and social skills. is more likely to be noticed when their functioning sample of boys and girls differed in behaviour is more difficult to manage. ASD symptoms using independent assessments The measures used to assess autism symptoms included the Social Responsiveness Scale (SRS), • Within this study teachers were less concerned of language, social, and repetitive behaviour Children’s Communication Checklist – 2nd Ed with girls than boys, other studies indicate that symptoms, (2) to assess whether girls with ASD boys with autism showed more problematic are more impaired than typically developing (CCC-2) and the Repetitive Behaviour Scale- behaviour at school. The researchers in this (TYP) girls in terms of social and language Revised (RBS-R). study suggest that home and school abilities and (3) to investigate whether girls with The following measures were used to assess presentations are likely starkly different for ASD are at greater risk for internalising problems internalising psychopathology: Behaviour girls with autism. Possible conflicting reports than TYP girls and boys with ASD. Assessment Scale for Children (BASC2) and the between carers and teachers would likely Children’s Depression Inventory (CDI). further complicate a clinician’s ability to determine whether exploration of autism diagnosis is warranted. 24 Middletown Centre for Autism Autism and Girls Volume 2 25

ASD in Females: Are We Overstating the Gender Difference in Diagnosis?

RESEARCH FINDINGS Full Reference BACKGROUND RESEARCH FINDINGS Findings regarding phenotypic differences Solomon, M., Miller, M., Taylor, S.L., Hinshaw, Research to date supports that an autism To date the gender difference in diagnosis has between boys and girls with ASD are mixed. S.P., and Carter, C.S. (2012). Autism Symptoms spectrum disorder (ASD) is more typically been primarily explained by three models; the Girls with ASD were found to be more impaired and Internalizing Psychopathology in Girls and diagnosed in males than females, with ratios brain differences model (BDM), the liability/ than TYP girls but they did not differ from boys Boys with Autism Spectrum Disorders. Journal of ranging from 4.3:1 to 16:1, a range that would threshold model (LTM), and the greater with ASD in autism symptoms. In adolescence, Autism and Developmental Disorders, 42, p.48-59. seem to be tempered by intellectual ability. variability model (GVM), although it must results showed that girls with ASD had higher This study proposed that ASD may be under be noted that none of these models has had internalising symptoms than boys with ASD and identified in females without a co-occurring consistent empirical support. The BDM proposes TYP girls, and higher symptoms of depression intellectual impairment due to a range of subtle that the difference in male and female brain than typically developing girls. Girls with ASD gender differences in symptom manifestation and increases males’ vulnerability to ASD given that appear to be at increased risk for affective gender imbalances in ASD research which may ASD characteristics derive from the extreme form symptoms in the teen years. contribute to biasness in assessment tools and of the male neurodevelopmental pattern. Females, diagnostic practices. on the other hand, may be less vulnerable due to IMPLICATIONS FOR PRACTICE their inherent empathic and social proficiencies. RESEARCH AIMS Similar to the BDM, the GVM asserts that males (by the authors) The aims of this research are to explore are more vulnerable to ASD given their broader • Girls with ASD appear to be at increased risk genetic variability whereas a particular type of for developing affective symptoms in theoretically if a diagnostic under- identification pathology may underlie autistic traits in females. adolescence. This suggests the need for parents exists in girls aged 18 or younger, who do not The LTM however, puts forward the theory and school teams to access education and present with a co-occurring intellectual disability training on signs and symptoms associated (ID). In addition, this study explores the role that while both males and females are equally with affective disorders in order to seek help at that sociocultural influences may play on the susceptible to ASD, females have an inherent the earliest possible stage. gender differences in diagnosis, and also the higher threshold to the disorder. factors which may contribute to possible under- • Developing and implementing effective The authors posit that where within any clinical identification in females. interventions – cognitive, behavioural and condition, there exists an over-representation psychotropic - to address internalising RESEARCH METHODS in one gender, the presence of bias in diagnostic symptoms in this high risk population of girls and sampling criteria must be considered. From is essential to minimise the potential effects of The authors reviewed and summarised existing the existing literature a number of factors have outcomes associated with adolescent literature on the gender difference in core and co- been identified that may contribute to the gender depression, including risk for affective occurring diagnosis of ASD. difference in diagnosis of ASD: disorders, psychiatric hospitalisation and • A higher number of males are referred to suicidal ideation. clinics or specialised services due to their presentation, for e.g. engaging in disruptive behaviours. • Females may need to exceed a higher threshold of severity than males to receive a diagnosis. • Very few studies take into account differences in ID when comparing females and males. Equally only a small percentage of studies examine dependent variables separately for males and females. 26 Middletown Centre for Autism Autism and Girls Volume 2 27

• Most research has been based on convenience • Females with ASD (without ID) may exhibit IMPLICATIONS FOR PRACTICE Full Reference samples from specialised clinics which have a less pronounced social deficits due to (by the authors) Kreiser, N.L. and White, S.W. (2014). ASD disproportionate representation of males. conformation to culture-based gender role • It is important that gender comparisons are in Females: Are We Overstating the Gender • Population-derived data have seldom been expectations and the internalisation of based on representative general population Difference in Diagnosis? Clinical Child and Family used to examine gender differences in ASD problems. samples rather than on data garnered from Psychology Review, 17, p.67-84. symptoms. • Peer groups, including protective female peers, specialised clinics alone in order to avoid a • The widespread use of health and educational may play a significant role in disguising social potential for gender bias. records to identify cases for epidemiological deficits or shaping the behaviour of females • It is imperative that future research studies means that females with ASD are likely with ASD. incorporates analysis on the gender differences to be missed as a result of the differences in • Gender-based expectations may serve to in the presentation of ASD symptoms. presentation between the genders. disguise social difficulties or developmental • ASD research must include more female • Differences in phenotypic expression between delays through their being interpreted as participants. shyness or immaturity. the two genders, where the criteria for • An examination of ASD diagnostic tools and diagnosis is more characteristic of one gender, • Due to its impression on behaviour, criteria must be conducted to ensure that they can also lead to underrepresentation of the less sociocultural influences may also impact upon are equally sensitive and applicable to both frequently diagnosed gender. This in turn can referral rates and a clinician’s ability to genders. lead to biases in diagnostic criteria as the accurately identify and diagnose ASD, as the • Research into sociocultural influences is criteria are based on the observed symptoms in individual may not represent the prototype of warranted due to its potential role in patterns the predominant gender. Of concern also is the the condition. of psychological problems seen in both females potential for clinician bias due to clinical • Gendered behaviour is also shaped by parents, and males. expectancies. and for females with ASD their close • Research concerning the possible unique • A potential exists also for gender bias in the relationship with their mother may help to presentation and resulting challenges faced by assessment tools used to diagnose ASD due to improve their empathising or conversational females with ASD is merited. the predominance of male samples included in abilities. • There is a need for treatment methods specific the development of said tools. Previous studies • Across studies females tend to present with less to females with ASD to be developed. have found that this may result in a failure to repetitive and stereotyped behaviours, and diagnose many affected females. fewer restricted interests, than males which The authors also posit that sociocultural may also contribute to under identification of influences and intrapersonal processes may ASD in females. impact upon the behaviour of females with ASD (without ID) and that these influences, in addition to genetic and biological processes, may serve to mask the more typical presentation of individuals with ASD. The existing literature looks at how the sociocultural influences of school, home, community and ethnicity form a basis from which behaviour is moderated by gender. Within this research a number of such influences have been identified: 28 Middletown Centre for Autism Autism and Girls Volume 2 29

Sex Differences in Autism Spectrum Disorder: Evidence from a Large Sample of Children and Adolescents

BACKGROUND RESEARCH FINDINGS • The authors of this study propose three Previous research has identified differences in the In the areas of intellectual ability, reciprocal social possible ways clinicians could make allowances prevalence, IQ and core features of autism (e.g. interaction, communication, visio-spatial for females having less severe repetitive and repetitive behaviour, communication difficulties) impairment, gross motor skills, auditory stereotyped behaviours than males with autism depending on whether a person is male or female. sensitivity and feeding difficulties, there was no when diagnosing cases, these include: difference found between male and female - Lowering the diagnostic threshold for clinical RESEARCH AIMS participants. significance of repetitive and stereotyped behaviours in females. This study aimed to investigate the presence and Males were reported to have more repetitive and - Altering the composition of repetitive and stability of ASD sex differences throughout stereotyped behaviours than females. childhood and adolescence. stereotyped behaviour scales by excluding Females were reported to have better fine motor sex-bias items. RESEARCH METHODS skills than males. - Creating sex-specific algorithms with A total of 325 children and adolescents, 52 female Parents reported higher levels of emotional differential item weighting. and 273 male, aged 3 – 18 years with a diagnosis symptoms for females, however teachers reported • Further research is needed to distinguish and of autism were recruited from a clinic assessing higher levels for males. understand sex differences on the autism high functioning autism (mean verbal IQ = 92.6) In school, males had a higher total problem score, spectrum. over a ten year period (1999 – 2009). The parents particularly greater difficulties with hyperactivity/ and teachers of the children and adolescents inattention and prosocial behaviour. completed interviews and questionnaires with an Full Reference experienced child psychiatrist or clinical IMPLICATIONS FOR PRACTICE Mandy, W., Chilvers, R., Chowdhury, U., Salter, psychologist. G., Seigal, A. and Skuse, D. (2012). Sex (by the authors) Measures used with the parents and teachers Differences in Autism Spectrum Disorder: • In this study teachers were less likely to report included: Evidence from a Large Sample of Children and difficulties with emotional symptoms and Adolescents. Journal of Autism and Developmental • The Developmental, Dimensional and mental wellbeing for females with autism Disorders, 42, p. 1304–1313. Diagnostic Interview. compared to males. This may make females • The Autism Diagnostic Observation Schedule. less likely to be identified as cases, or for • The Strengths and Difficulties Questionnaire. diagnosis to be delayed, which may have negative repercussions on when they receive Using the measures listed above, the researchers appropriately targeted health care, early focused on the sex differences regarding the interventions and educational resources. core and associated features of autism. • This study found that females with autism had a tendency to have less severe repetitive and stereotyped behaviours than males with autism, which may impact on females receiving a diagnosis of autism, as some clinicians will not consider an autistic diagnosis without the presence of repetitive and stereotyped behaviours. 30 Middletown Centre for Autism Autism and Girls Volume 2 31

Generalized Effects of Social Stories with Task Analysis for Teaching Menstrual Care to Three Young Girls with Autism

BACKGROUND Three adolescent females with autism and their A task analysis for changing a sanitary pad Data was collected during intervention using a The National Commission on Adolescent parents participated in this study. comprising of 11 steps was also created. questionnaire and data collection from the task Sexual Health (1995) defines sexuality as ‘the • Haley was aged 12 at start of study. She The first author met with each mother to ensure analysis. During intervention it was identified that sexual knowledge, beliefs, attitudes, values, and attended public elementary school. According the Social Story was clear and appropriate for two of the girls omitted steps in the task analysis. behaviours of individuals’ and recognises it as a to her assessment teams, her reading the family’s cultural values and preferences To address this a simulation session involving red normal and healthy part of life. While children comprehension reflected grade level 2. She was and additional information such as images syrup being placed on a pad and the pad placed typically discover their sexuality through casual able to express her basic needs and answer or statements were added and they were on the participant’s underwear prior to direction, social encounters, the need for appropriate sexual who, what, where questions using words and individualised by adding the mother’s and the ‘change your pad’ was included. This focused on development education for young people with phrases. participant’s photograph. Prior to intervention, the participants’ learning to distinguish a clean pad from a dirty pad. Also during intervention general autism is well documented. Maturation and • Natalie was 11 years old at the start of study. first author met once with each parent to explain menstruation are critical development milestones She attended public elementary school. Her how to conduct the intervention, to answer parents’ knowledge about maturation and puberty was for any young woman, including a young woman parents reported she read at 4th grade reading questions and to describe how to use the Social added. with autism. Despite this, the majority of research level and her receptive and expressive Story. To keep intervention procedures simple, the Findings were evaluated after intervention and one pertaining to menstrual care skills is specific to vocabularies were within typical limits for her following format was agreed: year post intervention. individuals with intellectual disabilities. age. She was able to maintain appropriate (a) Parents read each page out load and with ARTICLES REVIEWED communication exchanges and respond to The goal of a Social Story is to share accurate enthusiasm to keep participants’ interest. open-ended and yes/no questions. Despite the importance of sexual education social information that is easily understood by (b) Parents took turns in reading the Social • Susan was aged 9 years at the start of the for individuals with autism this area is under its audience. Social Stories have been used with Story as long as their daughter showed interest. research. She attended school for individuals researched. Several sexual education curricula and individuals with disabilities and are an emerging (c) Parents asked the questions located at the guidelines have been designed and published. Two intervention for individuals with autism. with disabilities and according to her educational team reports she read at 2nd grade bottom of each page and recorded the examples of these are the TEACCH program and RESEARCH AIMS reading level and her receptive and expressive participant’s answer on the given data sheet. the Devereux Foundation programme. (d) Parents provided the correct answer for The TEACCH curriculum is divided into four The purpose of this pilot study was to evaluate the vocabulary skills were within typical limits for incorrect responses and moved on to the next developmentally sequenced levels focusing on effectiveness of a parent-implemented Social Story her age. Susan was able to respond to who/ what/where and yes/no questions section. teaching appropriate behaviours and habits, intervention with an embedded visual task analysis appropriately. teaching skills related to personal hygiene, and on how to change a sanitary pad and a checklist (e) Intervention; once per day at a time that suited the family routine. understanding sexual anatomy and functioning. to teach menstrual knowledge to three young girls All three participants could independently follow a Level four addresses a variety of social relationships The mothers were trained in their own homes on with autism. typical bathroom routine and received moderate or and is designed for individuals with higher social high scores in adaptive living skills on the Vineland how to use and score the task analysis, how to RESEARCH METHODS score the data sheets, the importance of functioning. Adaptive Behaviour Scales. The Devereux Foundation curriculum involves The research took place in Southern California The intervention sessions and data collection were eliminating assistance and praise. Each step of the task analysis was modelled for the mothers parents in developing their children’s skills and and was supported by Grant H325K080108, Office conducted by participants’ mothers in each home. knowledge and includes body parts and functions, of Special Education programs. The participants’ Only participants and their mothers were in the to ensure their understanding and consistent replication of the intervention. social/sexual behaviour, the sexual lifecycle, dating, parents were recruited from a Parent Group using bathroom during observations due to Institutional marriage, parenting, establishing relationships, Baseline data was collected on each step of the task the following criteria: (a) gender, (b) onset of Human Subject Review Requirements. abuse awareness, boundary issues, assertiveness, analysis using a multiple opportunity assessment menstruation had not yet occurred, (c) parents The authors created a Social Story on puberty and self-esteem. reported that menstrual self-care had not been and menstruation which was divided into three procedure. taught, (d) parents viewed the acquisition of separate sections: Growing Up, My Period, and menstrual-hygiene skills as important and (e) How to Take Care of My Period which included an female parent was willing to collect data and explanation of the steps and behaviours included in implement the intervention. the task analysis. 32 Middletown Centre for Autism Autism and Girls Volume 2 33

The authors carried out a literature review on Social RESEARCH FINDINGS • Parents found the inclusion of knowledge on Stories and reported the following on two reviews: Menstrual Care: Additional steps needed to be maturation and menses effective. • A review in 2005 by Nichols et al on ten studies added to the task analysis. This resulted in all • One of the participants began her first menses found they were less effective when used with three girls being able to complete all the steps in during the study and observations were individuals with Asperger’s Syndrome. Nichols the task analysis independently. conducted in vivo. The mother reported that et al expressed methodological concerns her daughter did not have any fear during the Menstrual Knowledge: The results of this study first menses and that she continues to regarding these studies and suggested that revealed all three participants were able to Social Stories be used only with ongoing independently change her sanitary pad. understand and answer the comprehension individual monitoring to evaluate effectiveness. • At one year follow-up, the other mother questions posed about the Social Story and reported that her daughter had started to ask • Test et al (2010) carried out a meta-analysis on to answer the knowledge questions regarding meaningful and spontaneous questions about 28 studies published between 1995 and 2007. general maturation. They found many of these studies had concepts related to menstruation. methodological issues which included but were In the post-intervention questionnaire the • The findings of this small pilot study suggest not limited to research design, absence of authors reported that the overall parental rating that an intervention incorporating a Social social validity measures, and lack of was highly effective. The authors were only able Story, a task analysis and knowledge about maintenance and generalisation data to inform to contact two sets of parents for the one year menstrual care and maturation increased researchers about potential long-term effects. follow-up. They reported that the intervention understanding of basic concepts about growing was very helpful for preparing their daughters for up and menstruation care for young women The authors found that Social Stories have been menses. One parent reported that she no longer with autism. used effectively with individuals with disabilities used the intervention as her daughter was able to and their use with individuals with autism is • The outcomes of this pilot study were based on independently perform menstrual care both at emerging. parent reports; it would be beneficial for school and at home. This mother also reported educational professionals if future research An omission identified in the Social Story her daughter did not have any fear when she first could gather data from the practitioners in the literature reviewed by these authors was the began menses. The other mother reported she did school setting as well as the home setting. lack of generalisation data to inform researchers not use the intervention on a regular basis, but about potential effects of the intervention across would once her daughter begins menses. Full Reference conditions or situations. The authors also found that research has neglected the area of teaching IMPLICATIONS FOR PRACTICE Klett, L. S., Turan, Y. (2011). Generalized Effects skills related to puberty and menstrual care for (by the authors) of Social Stories with Task Analysis for Teaching individuals with autism. • Research on the use of Social Stories as an Menstrual Care to Three Young Girls with Autism. Sexuality and Disability. 30(3), p.319–336. Existing research focuses primarily on intervention with individuals with autism is masturbation and inappropriate behaviours emerging and so far the outcomes are associated with masturbation and is specific to promising. individuals with intellectual disabilities and not • The authors found that the use of this Social young women with autism. Story intervention which included visual supports and a task analysis was effective in increasing all three female participants’ functional living skill of changing a sanitary pad. 34 Middletown Centre for Autism Autism and Girls Volume 2 35

Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders during Adolescence

BACKGROUND 3. Experiences in high school The girls said that they preferred the company The researchers claim that much of the work RESEARCH METHOD Varied responses, both positive and negative, were of boys with autism as they were shared interest dealing with adolescence and autism has tended to gathered in respect to high school. based friendships rather than relying on a The researchers chose an interpretative Positives: perceived ‘girl’ interest. focus on males and therefore see the results of this phenomenological analysis to their multiple-case work as a means of going someway to highlighting • Afforded greater opportunities with a broader 5. Puberty and its related issues study approach of in-depth, semi-structured range of subjects. the gap in both literature and research. They claim interviews, allowing everyone to speak freely, Although the mothers were concerned about • A greater variety of students and experiences. that the disparity in work emanates from the openly and extensively about their experiences, the onset and management of menstruation, difficulty in detecting females in the early years; with three mother-daughter dyads and two • A more structured environment. they were surprised at how well their daughters reasons for this include the hypothesis that girls additional mothers. The girls with autism were all Negatives: dealt with the situation in a factual and logical have relatively strong skills in: within the age band of 12 -17 years. • Class work was more difficult or simply not manner, whenever it was explained and discussed • Social interaction, including the ability for motivating, thus uninteresting. in a developmentally appropriate manner. However, this also led to their daughters being pretend play. RESEARCH FINDINGS • Challenges making friends. open to everyone about their body changes and • Communication. Seven key areas of concern emerged from analysis. • Managing this larger environment. 1. Diagnostic issues menstruation, not fully grasping the concept that • Social imitation. • The mothers raised the issues. Each mother felt that principally attaining a discretion is needed around what is socially seen • Ability to focus. diagnosis proved problematic as their daughter • Mainstream class teachers may not be as a private matter. Thus, girls appear to present fewer behavioural did not appear to meet the set criteria. The late adequately prepared for teaching girls with Hygiene routines, using deodorant, daily issues compared to boys with autism. diagnosis meant that their daughter did not autism. showering, were noted as being a challenge for the It is claimed that adolescence is difficult for receive early intervention and relevant support • Transitioning to high school as their daughters mothers and subsequently their daughters. everyone but the skills needed to fathom the services. now had to deal with multiple teachers rather 6. Sexual relationships and concerns complexities of girl-to-girl friendships makes it than the single teacher in the autism specific Three out of the five mothers felt that their 2. Being surrounded by boys previous classroom. appear to be more difficult for girls with autism. Several mothers reported that whenever they daughters were not fully exposed to sexual issues Female adolescent relationships rely strongly received the support and their daughter was 4. Complexity of adolescent female relationships and romantic relationships as they showed limited on reciprocal sharing, emotional support, social afforded a place in an educational setting One of the girls said that she had difficulty interest in boys, and had a willingness to talk to problem solving, all requiring the ability for particular for children with autism, the girl was forming friendships and relationships with her their parents about all issues. fast paced responses; simply put, teenage girls invariably surrounded by boys and thus their female peers as she felt that they ignored her, However, it was noted that the girls faced specific tend to ‘talk’ while boys tend to ‘do’. This seems daughter was not even ‘fitting in’ in this specialist bullied her or picked on her simply because she challenges including becoming fixated on to cause great difficulty for girls with autism as facility. However, one mother pointed out that was different. However, other girls did not read particular issues, misunderstanding with personal they attempt to form, develop and maintain peer being surrounded by boys meant that her daughter these social cues, due to a different processing boundaries, innately appreciating and expressing friendships and may have an adverse effect on did not have to engage and try to be included in time thus not fully following a conversation or their own sexuality and being confused in respect their social and emotional development through girl-to-girl relationships, which can also prove interaction, and although the mother thought the to ‘typical teenage behaviour’ such as flirting. this crucial stage of maturation. difficult. The girl was then able to engage in daughter was being excluded, the girls did not All of the mothers expressed concerns that their interactions based on interests rather than gender appear to be aware of their exclusion. daughters may be vulnerable and therefore more RESEARCH AIM likely to be sexually exploited that their typically specific friendships. The mothers agreed that their daughters had developing peers as they may misconstrue and act The research, which is noted as being a difficulty with friendships because female teenage inappropriately in social situations thereby being preliminary investigation, aims to consider the relationships can be complex and their daughters open to others taking advantage of them. experiences of adolescent girls with autism from did not have a shared interest in topics such as their own perspective and that of their mothers fashion, hair grooming and hair styles, thus having through a range of domains including physical, a negative impact on their ability to form and emotional, social and sexual. maintain lasting relationships. 36 Middletown Centre for Autism Autism and Girls Volume 2 37

7. Impact of having an adolescent daughter • The peer group need support and education to with autism understand and accept difference and increase Each of the mothers thought that having a tolerance of others. daughter with autism meant that they were too • Sexual education, as a home/school/health involved in many aspects of their daughters’ lives, service collaboration, cannot be confined to connection with school, helping with homework, teenage years. The individualised facilitating hygiene routines, planning activities, developmentally appropriate process must actions that their friends of typically developing begin in the early years covering issues such as girls has relinquished. Although the mothers personal boundaries, the physical changes to enjoyed having such close relationships with expect through development but in particular their daughters, they also worried about the during puberty and acceptable ways of future, their daughter having friends and being expressing sexuality. accepted by others, having an array of career • Greater opportunities for social interaction for and social opportunities and achieving personal all family members must be explored and growth, saying that to cope with this stress they consideration given to the provision of gender relied heavily on other mothers of daughters with specific groups as an option for the girls with autism, which at times can be a superb release, yet, autism and their parents as in such an it can also be isolating. environment they can all feel accepted and not have to explain anything to others. IMPLICATIONS FOR PRACTICE (by the author) Full Reference • All involved in the care and education of children must be aware of the differences in the Cridland, E. K., Jones, S. C., Caputi, P. and Magee, presentation of autism in girls from the more C. A. (2014). Being a Girl in a Boys’ World: commonly recognised traits displayed by Investigating the Experiences of Girls with Autism males. This may mean that girls are diagnosed Spectrum Disorders during Adolescence. Journal earlier and afforded early invention and autism of Autism and Developmental Disorders, 44, specific strategies. p. 988-1000. • Girls with autism may experience difficulty being included by their peer group and this isolation may lead to mental health problems, depression and anxiety accruing from social isolation. Therefore, girls may need in-depth support to achieve appropriate and socially acceptable communication and social skills, strategies to develop individual self-esteem and self-identity. 38 Middletown Centre for Autism Autism and Girls Volume 2 39

CONCLUSION Your Opinion

The articles summarised address a range of The Centre trusts that you have found this Research Bulletin informative. relevant areas within the issue of autism and It would be appreciated if you would take a few minutes to provide the Centre girls. These range from gender differences before, with feedback in relation to this bulletin by clicking on the survey link below. during and after diagnosis as well as social, emotional and self-care issues. There is a growing Survey for Autism and Girls (Volume 2) body of literature both empirical and anecdotal indicating that autism in girls presents differently and that girls with autism face differing difficulties to their male counterparts. These differences can include: • Differing experiences with diagnosis; in some instances the diagnostic process for girls can be longer or delayed compared to boys. • Differing profiles of behaviours, strengths and impairments with some girls having stronger social and imitation skills than boys. • Research in this Bulletin also indicates that the relationship with and presentation of any special interest can be different. • Girls and their peers may need additional support and education in understanding autism in friendship skills and support with social skills and self-care skills. For those engaged in autism research there is a need to understand the potential differences in presentation, particularly in relation to repetitive behaviours. There is a need generally for more girls and women to be involved in autism research. The Centre’s Research and Information Service welcomes any correspondence including suggestions for future Bulletins to: [email protected]

Middletown Centre For Autism 35 Church Street, Middletown, Co. Armagh BT60 4HZ T +44 (0)28 3751 5750 E: [email protected] W: www.middletownautism.com J G Cooper: Chief Executive, Registered in Northern Ireland, No. NI063661