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.