Professional Interview Series: Professor Uta Frith

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This is the first in a series of interviewing professionals in the area of Autism, Aspergers and related conditions. It is with great honour that I was given the opportunity to interview Professor Uta Frith.

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Tania: Welcome Professor Frith and thank-you for agreeing to an interview with me. I am honoured to be interviewing a world expert on autism spectrum conditions. What attracted you to make a career in cognitive neuroscience and Autism?

Professor Frith: In the 1960s, when I started out as a PhD student, autism was hardly known and cognitive neuroscience did not exist. I had now idea that my career would take me deep into these mysterious directions. I suppose it was the very mysteriousness of autistic children, which attracted me to study them.

I was interested in development because I had been very impressed by lectures on Piaget by Ernst Boesch, Professor of Psychology at my University, Saarbrücken. Also at that University I was able to attend amazing Ward Rounds where different psychiatric cases were presented. This experience made me very curious about the mind and what was normal and what abnormal. I naively hoped that studying children at young ages might bring me closer to origin of the mind.

I was very fortunate to train in Clinical Psychology at the Institute of Psychiatry, a happening place in the 1960s, the place where Behaviour Therapy was pioneered. I intended to find a way to do research from the very beginning: It was very clear to me that we were distressingly ignorant about the mind, and that research was a necessity rather than a diversion from clinical work. Fortunately, I was able to get to get to know cases of autistic children at the Maudsley Hospital under the guidance of Michael Rutter, who was then already widely respected as an authority on autism. His PhD student, Lawrence Bartak, an Australian, and I were contemporaries and often worked side by side in the very first established special schools for autistic children. We felt that the teachers were doing a fantastic job. The children seemed remarkably similar to us, no matter what school they went to. But we often wondered what to make of those few autistic children who stood out from the others because they were not just clever but they had excellent verbal abilities. How did they fit into the picture?

 

My mentors were the experimental psychologists Neil O’Connor, an Australian, born in Kalgoorlie, and Beate Hermelin, born in Berlin. They were pioneers of the psychological study of mental retardation. They were among the first psychologists in the world to ask whether autistic children differed in their cognitive abilities from those of other children with intellectual disabilities and whether neurophysiological measures, such as EEG, would tell us about their brain function. They were way ahead of their time. Their work opened amazing possibilities to understand the nature of autism by teasing apart abilities and disabilities.

 By good fortune, Lorna Wing worked next door in the Social Psychiatry Unit. As the mother of an autistic girl, Susan, she had unique knowledge of autism and already at that time questioned Kanner’s rather narrow diagnostic criteria. She was convinced it was possible to distinguish in even the most intellectually disabled children those who had the ability for reciprocal social interaction and those who did not. I myself was not sure I could do this, and was more confident when the children had some language and showed some islets of ability. Here really was a form of autism that I could instantly recognise, a rare form as it turned out.

 The neuroscience of autism only started in the 1990s when it had just become feasible to use scanners to look at the signs of neural activity (as reflected in blood flow) in the living thinking brain. Here the collaboration with my husband, Chris Frith, was the vital link. Without his know-how and his expertise I would never have dared to enter this exciting field.

Tania: You received your PhD in 1968. Since then, can you please comment on the changes and the explosion of knowledge and research in the field of Autism?

Professor Frith: Knowledge about autism has accumulated steadily. A number of TV programmes were shown that portrayed a rather bleak view of autism, but they increased awareness. When the film “Rainman” came out in 1988, it was probably the first time that autism had been presented in an adult, and also presented as not all-bleak. It also made people aware of some very positive qualities. I don’t mean the savant skills here, although they do create permanent sense of wonder, but I am thinking of the lovely emotional naivety of Rainman that contrasted with the devious machinations of his non-autistic brother.

One of the unstoppable changes in the conception of autism was the recognition of atypical cases and cases that were not learning disabled. The term autism spectrum and the term Asperger syndrome had been introduced by Lorna Wing, who long wanted to push apart the narrow categories of autism. At the same time, Michael Rutter and Susan Folstein pushed apart these categories as a result of their famous twin studies. In these studies it became clear that when a narrow definition applied to one identical twin, the other twin very likely had a milder form of autism too. In fact they found that there was a 90% concordance in identical twins, if the criteria of autism were broadened. This was ground-breaking work not only because it broadened the category of autism, but even more importantly, it established that there was a genetic origin. Only then could a psychogenic origin be ruled out decisively – i.e. the idea that autism was a withdrawal resulting from profound rejection. This pernicious myth was at last eroded.  

 One of the biggest changes in the awareness of autism, in professionals and the general public alike, was the rise of Asperger Syndrome. I edited a book in 1991, which contained my annotated translation of Hans Asperger’s original paper. It was surprising to me how eagerly it was received. One of the unanticipated consequences was that the diagnosis of Asperger syndrome became fashionable, so that a number of people with successful lives began to diagnose themselves and even famous figures from history. But being a geek and being socially inept are not sufficient. I think there is a big difference between having an autism spectrum condition and being a shy, unconventional and obsessive.

 The new DSM-V has abolished the diagnosis Asperger syndrome. It still needs to be seen what the consequences will be, but I tend to think this is the right move. The label served its purpose in raising awareness of the autism spectrum. There is after all general agreement that it is a variant of autism and part of a very heterogeneous collection of autistic conditions. The difficult task ahead now is to see whether it is possible to identify subgroups hopefully, in terms of neuro-cognitive phenotypes.

 

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Tania: Please tell us about Theory of Mind, the theory that you developed along with Alan Leslie and Simon Baron-Cohen, in the 1980’s. How do the brains of people with Autism and people without Autism differ in terms of Theory of Mind?

Professor Frith: I think the history of Theory of Mind research needs a historian. I feel rather too involved and will not be able to give an unbiased account. In my view, the first part of the story is to do with two Austrian psychologists, Josef Perner and Heinz Wimmer, who devised an ingenious test. This test could show whether a child attributed a belief to another person, i.e. an invisible mental state, and whether the child predicted what another person would do next on the basis of the belief. It had to be a false belief rather than a true belief. In the case of a true belief you can’t tell whether the other person acts on the basis of a real physical state of affairs or an invisible mental state of affairs, because there is no difference. But in the case of false belief there is.

The next part of the story brings in Simon Baron-Cohen who had started his PhD at the time and who did the first critical experiments. Alan Leslie acted as co-supervisor and had already been thinking about the importance of invisible mental states, such as ‘pretense’ in the make-believe play of very young children. This was very exciting to me as I knew from a study by Lorna Wing and Judy Gould that autistic children showed very poor pretend play compared to non-autistic but intellectually disabled children.

 Now I must mention Tony Attwood, who did his PhD at the same time, but quite independently, and conducted a different and most interesting study. He asked how well – if at all – intellectually disabled autistic and non-autistic adolescents use nonverbal gestures. The results were very surprising, since at the time most people expected that autistic children would not use gestures in any meaningful way. But they fitted in beautifully with the Theory of Mind hypothesis: The intellectually disabled autistic children were well able to use gestures instrumentally, i.e. to get something, but much less able to use gestures expressively, i.e. to communicate an inner feeling state.

 The story heated up as we did the first PET studies, with trepidation, and with a number of eminent collaborators.  Obviously only very able and very brave adult volunteers took part. One of them was Heinz Wimmer. The autistic adults came from the clinic of Christopher Gillberg and Stefan Ehlers in Gothenburg and were scanned at the Hammersmith Hospital in London. Here we compared what happened in the brain when people were reading Theory of mind stories compared to Physical stories, invented by another of my now famous PhD students, Francesca Happé. When PET was replaced by MRI scanners, many more studies were carried out, and many different tests were used, frequently invented by Francesca Happé. For example, cartoons that either depicted jokes that required a mental state attribution compared to jokes that did not. Perhaps most successfully, we contrasted short movies where animated triangles interacted with each other. In some of the movies the viewer can’t help attributing mental states to the triangles, but in others, where the triangles move randomly, such ‘mentalising’ is not spontaneously evoked.

 Many labs all over the world have used neuroscience methods to study Theory of mind in the brain, in autistic and non-autistic people. It is still very surprising to me that one particular network of brain regions comes out again and again as being primarily involved. This network reliably encompasses regions of the anterior medial prefrontal cortex and the superior temporal sulcus at the temporo-parietal region; but there are also other but seemingly more variable regions involved.

Tania: Please tell us about your current ideas and theories on Autism today, in 2013?

Professor Frith: I continue to be fascinated by autism and by theories that try to explain the core features. I believe that the Theory of Mind hypothesis has had to be updated, in such a way that we distinguish between unconscious and conscious mentalising. I now believe that it is the unconscious type of mentalizing that is somehow failing in autism, but not the conscious type.

 Here is the problem: Why do able autistic adults who have learned to mentalize and pass all known Theory of Mind tasks, nevertheless still show the sort of interaction and communication problems in everyday life, the very problems that are supposed to be due to poor mentalizing ability. Do they not have real mentalizing ability, or is the theory wrong?

 A study that I did with Sarah White (my last PhD student), Atsushi Senju and Victoria Southgate, a few years ago, tried to answer this question. In this study we used anticipatory eye gaze to assess unconscious mentalizing, and this  distinguished autistic from non-autistic participants. Neurotypical individuals anticipated in their eye gaze where a character would look for a hidden object on the basis of the character’s mental state. But there was no such anticipation in the autistic adults. So we can reason as follows: in everyday life fast interactions are the norm, and here the unconscious form of mentalizing matters more than the conscious form. However, there clearly are advantages to having conscious metalizing – what precisely are these advantages? New research is needed.  

 Perhaps the most surprising part of the story of Theory of Mind is that such a complex and high-level cognitive ability as mentalizing, i.e. “attributing hypothetical mental states to others and predicting what they are going to do next”, is actually quite basic and has a signature in the brain.

Tania: I am very interested in the female phenotype of Autism. Could you please tell us your thoughts on the gender differences between males and females with Autism? Clinical anecdotal evidence suggests that females are not being diagnosed until much later in life or misdiagnosed with other disorders. Could you comment on this please?

Professor Frith: I believe this question has at last attracted enough attention so that interesting papers are now appearing that are trying to provide some answers.

 The gender difference in autism has fascinated me for a long time, but I never got a chance to study it. My favourite hypothesis for long has been that there is a special protective factor in being female and a risk factor in being male. This goes with the finding that in most neurodevelopmental disorders there is an excess of males. There are a greater number of boys who have dyslexia, or conduct disorder, or attention deficits.

I wish there was more evidence as to the way autism is expressed in the behaviour of females. There is an idea that girls are more likely to conform and more likely to be compliant. I don’t know whether this is the case, or simply an expectation that is part of the stereotype of being female. In either case, affected girls would less often be considered in need of clinical help. They can ‘pass for normal’ as we know from the gifted women who lucidly write about their autism.

Tania: Please share with us what work you are currently involved in?

Professor Frith: I retired in 2006 and have no longer a research group or students. So what I am doing is not work.

At Aarhus University I am fostering a highly inclusive autism network. This is to provide a forum for discussion involving people with autism, parents, teachers, clinicians and researchers from neuroscience, epidemiology, psychiatry, brain pathology, anthropology and so on. I am hoping to facilitate research by bringing together people from these different backgrounds, who bring a refreshing perspective, and can offer new ways of answering persistent questions.

 I am still writing papers with colleagues, some based on work done some time ago, but fewer and more slowly, which gives me rather more pleasure. I have to confess that sometimes I am a ‘free rider’, that is a co-author who does far less work than the others. I am still very interested to read about new research and I am particularly happy if I see publications by my wonderful former students and colleagues, who are vigorously advancing the field.

Apart from this I have other interests too, for example, promoting women in science, thinking about how neuroscience might provide some tools and some insights to improve education.   

Tania: Could you please comment on the research related to brain imaging and Autism? What are your thoughts on Temple Grandin’s brain imaging results?

Professor Frith: I loved being involved in brain imaging studies. It was exciting, but we were still very much at the beginning of the development of the method, and we did all studies with rather small numbers of participants. Things have changed a lot: the techniques have improved and we can now trust them to be safe also for children.

 Still, brain imaging results are only as good as the experimental design that is used. More often than not, brain imaging studies are difficult to interpret because the statistical analyses of brain images is very complex and error prone.  The main misunderstanding is that the blobs you see on a brain are actual signs of nervous activity. This is not the case. The blobs are depictions of statistical differences and it is hard to get one’s head around this. Furthermore, the activity in nerve cells cannot be seen directly, all we see is increases in blood flow. The rationale is that the more active the nerves are the more oxygen they need, hence the more blood is flowing in their direction.

 Just like behavioural studies, brain imaging studies rely on pooling together data from many trials and from groups of people, basically to remove noise in the data and thus make them more reliable.

 This leads me to mention another misunderstanding: You can’t take one single person’s scan and tell from this whether they are autistic. This is true even when the scan is done in the manner of an X-ray, that is, they were just lying still in the scanner and you take beautiful photographs of the anatomy of the brain. With our present techniques you can discover if there are grossly deviant features, such as tumours or injuries. This is not the norm in the case of autistic brains. But there are subtle differences when you superimpose data from many brains on top of each other to compute reliable averages. Many such studies now exist, and they always report differences in lots of places, grey matter, white matter, cortical regions, subcortical regions and so on. But we don’t know what the differences mean. 

The Brain image of Temple Grandin’s brain does not look like that of other autistic people. It does not like the brain of a neurotypical person either. There are so many differences that it is difficult to name them all, but these differences are very difficult to interpret. Temple Grandin during her whole life has built up a number of important compensatory strategies, and these leave their imprint in her brain. If we had an image from her when she was younger it would likely look different from now.

 Incidentally, most images of autistic people look perfectly normal to the naked eye. Some brains are particularly large, but then some neurotypical brains can be large too.

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Tania: I hear you have become Dame Uta Frith. Congratulations and a well deserved title for you. For those of us here in Australia, could you please comment on the process of gaining the title of Dame and how that came about?

Professor Frith: This was a most unexpected and amazing experience, something that never ever crossed my mind. I have no idea how it came about as the process is shrouded in secrecy. Amazingly, some kind people must have believed in me and proposed me and never claimed the credit. So I do not know to whom I should show my gratitude. I have retained my German citizenship since I would have had to give it up to obtain a British passport. This did not seem right to me as my accent immediately reveals that I am German, even after 50 years of living in London. This means that my DBE is honorary. I can put the letters after my name, and I am immensely proud to be able to do this, but I should not be called “Dame Uta”, you know, just as Bob Geldof should not be called “Sir Bob”.  I received the insignia from David Willetts, Minister of Science, in a special and very nice ceremony on 31st January, where I was able to invite some of my family and friends. This was also my mother’s birthday, which I thought was a wonderful coincidence. There are only few occasions when ‘decorations can be worn’, but I did wear mine recently at a special Guest Night at Newnham College in Cambridge where I am an Honorary Fellow.

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Tania Marshall©. 2013. Interview Professional Series. All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.

I Am AspienWoman Book Testimonials, Coming September 2015 and available for pre-order at www.aspiengirl.com

I Am AspienWoman: The Unique Characteristics, Traits and Gifts of Adult Women on the Autism Spectrum (Foreword by Dr. Shana Nichols) is the sequel to the best selling and IPPY eLIT Gold Medal Award winning I Am AspienGirl (2014), Foreword by Dr. Judith Gould. To pre-order, go to http://www.aspiengirl.com/english

The book is available in eBook, paperback and a gorgeous hardcover version and can be bought separately or along with I Am AspienGirl.

11

Have you ever wondered about a friend, a partner, a mother, sister or daughter? Wondered why she has said she feels ‘different’? Wondered why some things are so easy for her yet other things that most people perform with ease seem so challenging? Out of step with her peers, she may struggle keeping friends and a job, yet she has multiple degrees. She may be a gifted singer, yet she struggles with social interaction and performance anxiety. Maybe she was told she was shy and just needed to come out of her shell. Told she’d grow out of her social awkwardness. Maybe she had or has an eating disorder. Maybe she has been given too many ‘labels’? She may have spent years going to counselors, therapists, doctors or psychiatrists, with no real improvement or answers. Maybe Autism or Asperger Syndrome was mentioned but she did not resonate with the male profile or even with the stereotypical female profile.

Bright from early on, she may have single-minded focus, sprinkles of anxiety, sensory and social issues, be gifted in art, writing, research or singing. Maybe she is ‘Aspien’, an adult female with Asperger Syndrome or Autism. She has a unique constellation of super-abilities, strengths and challenges. She may feel or say that she is from another planet. Maybe nothing so far has really fit in your search for understanding her. Maybe she herself has been searching for self-understanding, or maybe she has recently self-diagnosed and is struggling to obtain a formal diagnosis. She may have a child or children on the Autism spectrum or it runs in her family and she is now recognizing it in herself.

If you are looking for a book on the often perplexing and unique adult female autism spectrum traits, then this is the book for you. This book showcases the female profile in a unique format, presenting a combination of images and quotes to illuminate the newly emerging Autistic female phenotype. This highly visual format showcases what Autism is like for females, as spoken by females on the Spectrum and those that love or support them. This book is about awareness and education of the female phenotype.

Drawing from years of practitioner experience, Tania Marshall takes you inside the world of adult females with Autism or Asperger Syndrome. Current research supports an inherent gender bias with females being under researched. This book was specifically designed to be a ‘layman’s’ guide for the general population, professionals, family members, the education and psychiatric fields.

Foreword by Shana Nichols, PhD

“Having written an endorsement for I Am AspienGirl ®, and recommending it as a must read to anyone parenting or working with a girl on the autism spectrum (including the girls themselves), I was delighted to be asked by Tania Marshall to write the foreword for I Am AspienWoman®.

I began working regularly with AspienGirls in 2005, having developed ‘girls only’ social coping groups. At that time, there were no resources available for families that specifically addressed the issues faced by females, and limited research had been conducted with the goal of understanding the experiences of girls and women. Few clinicians had begun to specialize in this area, yet those of us who did knew that these girls and women have unique needs and that a subset of females present with behaviors and characteristics that can be quite dissimilar from their male counterparts. When viewed through a ‘male’ lens, AspienGirls and Women are often overlooked, missed, misdiagnosed, and misunderstood, resulting in a rallying call for the professional community to pay attention and work towards remedying the situation.

In recent years that call has begun to be answered. Over 15 studies addressing gender differences and the experiences of females have been published in professional journals in 2015 alone. Attendees at the annual International Meeting for Autism Research in 2015 were able to participate in a session devoted entirely to research concerning females on the autism spectrum. A number of clinical conferences with the goal of offering practical strategies and facilitating the understanding of females have popped up globally in the last two years, providing the opportunity to learn from professionals and from women on the spectrum themselves. Lastly, the number of books and resources that are available to families, professionals, and females has grown. I Am AspienGirl was a rich and unique contribution to this literature, and I am thrilled to say that I Am AspienWoman ® is equally creative and inspiring.

With its characteristic eye-catching photos and powerful quotes from members across the entire female autism spectrum community, readers of I Am AspienWoman will find no shortage of knowledge, illumination and encouragement – after all, an important message of the book is for women to be their own superheroes. I Am AspienWoman celebrates the strengths, triumphs, talents and beauty of females, yet does not shy away from a balanced discussion of challenges, concerns, and important yet often overlooked issues such as gender and sexuality, personal safety, mental health, and motherhood. Essential themes that run throughout include Identity, Connection, Validation, Self-Care, Inspiration, Strategies, and Optimism. Top tips from over 20 Real-life AspienWoman Super-hero Mentors offer a smorgasbord of suggestions and support.

The pages of I Am AspienWoman hold a diamond of a message for any reader. It may be big, life changing, and fabulously eye opening. It may touch your heart and whisper “I see you.” It may provide the much-needed words to explain, describe or share thoughts, feelings and experiences. It may open doors, or it may give a gentle push to close those that are no longer helpful. It may be a hint of Hope, or perhaps a spark of Superhero-ness. It may be all that is needed to get started, re-start or continue on the journey of becoming the best version of who you are: an AspienGirl or Woman, a family member, a friend, an educator, a professional.

As a field, we still have a long way to go in advocating for better understanding of female autism, educating and training professionals, developing appropriate assessments and treatments, and creating a community of support and inclusion for AspienGirls and Women. Given all that has happened in the last few years, I am encouraged that we are headed in the right direction. Thankfully there are those special books, like I Am AspienWoman, that act as a guide and an incredibly accessible resource. As with her prior book, Tania’s latest offering has not surprisingly leaped onto my recommended reading list.”

Shana Nichols, PhD
Owner, Director, Researcher                                                                                        ASPIRE Center for Learning and Development                                                             Author of ‘Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years’

“Tania Marshall has created a groundbreaking book. Most often we hear the voice of the parent or professional, at last we hear the voice of women with Aspergers. Aspienwomen can be totally inspiring! Thoroughly recommend.”

Carrie Grant
Vocal coach, judge and TV presenter
Judge, BBC 1’s Fame Academy and BAFTA Award winning “Glee Club.”
Presenter, The One Show
Author, bestselling book “You Can Sing”
Mother to two daughters on the spectrum
United Kingdom

“There is definitely a need for more information for individuals who get diagnosed later in life. Diagnosis as an adult can provide tremendous insight into why relationships were so difficult. When I was in college, I remember many older quirky adults who seeked me out and helped me. Today many of these people would be diagnosed with either autism or Asperger’s syndrome. One woman was the associate dean’s wife and she gave me many hours of emotional support during difficult social times in college.”

Temple Grandin, Author, USA
The Autistic Brain and Thinking in Pictures
“Once again, Tania has provided a visual conversation starter to demonstrate the wide and varied adult presentation of female autism. Featuring individual profiles of successful autistic women along with quotes from individuals and family members, this book will help to further increase the understanding that women with autism are out there – even if they are hard to spot”.

Sarah Hendrickx,
Autistic adult
Masters (Autism), Postgraduate Certificate (Asperger Syndrome)
Author of Women and Girls with ASD, Understanding Life Experiences from Early Childhood to Old Age. JKP, (2015)

As the parent of an adult son who was diagnosed with Aspergers after many years of misdiagnosis and assumptions, ie “little professor” “lazy’ and more + the spouse of a man who was diagnosed with Aspergers as well I enjoyed reading your book.

The layout of I Am AspienWoman is quite impressive. The photos are vivid. The self descriptive disclosures regarding living with Aspergers by individuals and family members provide a venue for other woman on the spectrum to identify with. The photos and self disclosures are uniquely reinforced with factual information regarding the bio/psycho/social characteristics of those on the spectrum by the author in a format that the laymen can understand. I Am AspienWoman takes Aspergers and living on the spectrum out of the clinical context and provides a human and real window into the meaning of living with Aspergers.

I Am AspienWoman focuses on the positive aspects of living with Aspergers. It does not focus on the deficits. For sure, this book portrays the challenges associated with being on the spectrum but the strengths that individuals possess due to having Aspergers is reinforced. This will be resultant in providing hope and  the reader perceiving themselves, or a family member who has Aspergers in a more positive light.

The unique combination of presenting bios of “real people”, challenges, and the strengths of individuals with Aspergers will provide a venue for not only appreciation of strengths but challenges that effect individuals on the spectrum as well. I Am AspienWoman cracks the heuristics of society at large and any misnomers regarding Aspergers.

Many different aspects regarding traits, characteristics, challenges  are portrayed which reinforce the individuality of individuals on the spectrum. As with neurotypicals, each individual possesses different traits, talents and personalities. Hence, this is not a cookie cutter diagnosis where everyone with Aspergers is talented in math or computers. 

Thanks Tania for writing a much needed and “human” book that many on the spectrum will seek out for positive role models and will cause  society at large to change their perception about individuals on the spectrum who they live, love, work and play with on a daily basis.

Mari Nosal M.Ed.

Author
Ten Commandments Of Interacting With Kids On The Autism Spectrum And Related Commandments

Watch for AspienPowers: The Unique constellation of Gifts, Strengths and Abilities of Females on the Autism Spectrum, coming late 2015.

Aspienpowerscover

Book 3 of the series

Tania Marshall is a best selling author, a 2015 ASPECT Autism Australia National Recognition Award Nominee (Advancement Category) and a 2015 eLIT Gold Medal Award winner for her first self-published book entitled “I Am AspienGirl: The Unique Characteristics, Traits and Strengths of Young Females on the Autism Spectrum”, foreword by Dr. Judith Gould. She divides her time between private practice, research and writing. Tania is an Australian Psychological Society (APS) Identified Autism Practitioner, a Helping Children with Autism Early Intervention Service Provider (HWCA), a Better Start for Children with a Disability Provider, an approved Medicare provider of psychological services and a trained Secret Agent Society (SAS) Practitioner.

Tania is available for Skype or in person assessments, support, intervention, coaching and problem solving sessions. Tania can also be contacted for interviews, workshops, presentations, conferences, articles, publishing inquiries and/or translations at tania@aspiengirl.com

Assessing the behaviors, traits and abilities of young females on the Autism Spectrum

Assessing the behaviors, traits and abilities of young females on the Autism Spectrum: For professionals and parents

Girls with high functioning Autism (Asperger Syndrome) often have subtler characteristics that lead them to be missed by professionals. Many (not all) are able to use compensatory strategies to mask their difficulties and these are learned from before they start grade school. Autism tends to be a condition of extremes; an either/or condition in which two girls who present quite differently can both be on the Spectrum. For example, one is shy, quiet and mute and the other is loud, has a lack of boundaries and talks too much. The both have social communication and interaction difficulties.

Girls on the Spectrum may present as shy, quiet and at times mute, taking a long time to warm up to situations or they may present as overly talkative, verbal and lacking boundaries.

The quiet girl can be described as passive, a follower, watching and observing her peers much of the time to learn what to say or how to act. She is very shy in social situations. The verbal girl is often dominating, described as “bossy and controlling”, often described as having to have the best at everything and have her own way. She dominates and controls social situations.

Both girls may not receive many birthday invites, prefer one or two close friends, prefer to play with younger or older children rather than their peers, prefer to talk to boys or have boys as friends.

The quiet type may be attracted to extraverted personalities who tell her what to do or are controlling towards her due to her passivity and shyness. The verbal type may be domineering and controlling in her interactions with others.

Why do girls who have an assessment not receive a diagnosis?

Females can and do make eye contact and can have superficial reciprocal conversations in initial interviews with professionals.

Females are reluctant to admit they are having difficulty and will say they have friends, that they know what to do socially, when they are actually socially confused

Females start learning, often from before grade school to camouflage their difficulties and pretend every thing is fine

Females will say everything is ok and there are no problems even in the face of contrary evidence or difficulties

Professionals are viewing the female as just a “shy” and/or “sensitive” child or a “hormone driven” teenager, when in fact they have Autism. Around the age of 12-13 are when the proverbial wheels may begin to fall off and the inability to cope comes to the forefront

Professionals may diagnose only the presenting issue (for e.g., anxiety disorder)

They may receive high scores on the ADOS but not enough for a diagnosis

The majority of assessment tools are based on males

Professionals are not trained in understanding the gender differences, the gender bias, the questions to ask, compensatory strategies and camouflaging techniques

Some clues look for in an assessment

The Social World

1. exaggerated facial mannerism or a flatter affect. Many girls I have worked with have a slight grimace to their smile. This is a clue that they may be having difficulties with their own non-verbal body language. Many childhood photos reveal either no smiling or a slight exaggerated smile or facial expressions

2. look for facial expressions not matching the mood or the situation being discussed. For example, it is common to observe smiling or laughing whilst talking about a situation that would usually be associated with a different emotion (and therefore a different facial expression and tone of voice).

3. many girls say they know what to do in a social situation but when asked, are not able to tell you what they would do or give an answer that leads to to believe otherwise. An investigation into levels and types of friendships and social skills often reveals difficulties

4. exaggerated non-verbal body language is often a clue. Some girls present in the clinic with body language that appears “odd”, unnatural or like they are acting with you in a conversation.

5. Many females are well-behaved (often too well-behaved) in school but the opposite at home (due to social exhaustion and holding it all in)

6. Many females are observed using behaviors or words from their peers, other people or television. They may copy, look like or act like others, taking on the characteristics, mannerisms, voice, sayings, of others.

7. Many females present in different ways depending on the situation and this can be confusing to family members.

8. Many females will tell you they know what to do in social situations, but the evidence is contrary and/or you will get the impression that they are confused or are not being truthful.

9. Some females may not apologize when they have made a social error and some females over-apologize due to being confused about social rules. Some females refuse to apologize even when it is plainly obvious it would be in their best interests to do so.

10. Many females are able to socialize quite well for small periods of time but them experience social exhaustion or a ‘social hangover’, needing solitude to recharge her batteries.

The Play World

1. Some girls have a preference to play with stereotypical boys toys, having no interest in dolls whilst others have an obsessive-like quality towards dolls and stereotypical girls toys (for e.g., collecting all barbie dolls).

2. Girls can often be observed spending the majority of their time putting together the scene of play, rather that actually playing. For example, spending the majority of time ensuring all the furniture, accessories and dolls are in the right place). They often have elaborate scenes of play set up and organized.

3. Whilst playing on their own, girls are often observed to be role-playing adults. For example, a girl may set up all her teddy bears bears, dolls, etc., and role play the teacher, doctor, nurse or other role. She may take attendance, give time-outs, write out lesson plans and/or teach class lessons.

4. Girls on the Spectrum are often far more imaginative than their peers. They are often observed pretending to be animals and/or imitating them. They may also have some difficulty distinguishing between reality and fantasy

5. A tendency to have imaginary friends and/or animals who are very real to the child, to the point that they may have table settings for them at the table, seats for them in the car, and so on.

6. Girls often spend more time playing with the family pets and/or on nature than their peers, having a natural affinity/gift in the areas of nature and animals. It is the intensity of the interest as compared to neurotypical peers that is key here.

7. May have obsessions with other people which can be observed as too clingy, not allowing the friend to have other friends, not giving them enough ‘space’, or obsessing over them

8. Females tend to have more avoidance traits and strategies when demands are placed on them

9. Some females may flitter from group to group in school not really having any real friends but giving the appearance of having friends, so that no one would pick up on this

Abilities, Gifts and Talents

Abilities, Gifts and Talents are plural due to the many females I have met who display multiple talents. These abilities often include:

hyperlexia/reading ability, perfect or near-perfect pitch, languages, art, performing arts (dance, acting/drama, singing, musical theatre, modelling, involvement in a band, comedy), the care of animals, mathematics, writing fiction and/or fan-fiction and/or poetry and/or songwriting, intelligence,

Mature interests may include interests advanced for her age (philosophy, psychology, opera, a language)

Immature interests may include an interest well past her developmental age (for example, my little pony, doll or teddy bear collections).

Some presentations

Some females present as more of a “tomboy” appearance (preferring an androgynous clothing style) and disliking make-up and sterotypical girls clothing

Some females present as a “ultra-feminine” or “princess” like appearance (love make-up, fashion, trends and shoes). they may spends time involved in shopping for clothes and/or designing clothes, perfecting the art of makeup and.or modelling

Regardless of presentation, a difference in terms of clothing as compared to her peers is usually observed. My screener which was the basis of I Am AspienGirlL The Unique Characteristics, Traits and Gifts of Females on the Autism Spectrum is here:

https://taniaannmarshall.wordpress.com/2013/03/22/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-young-girls-with-asperger-syndrome/

A female autism assessment tool I often use in conjuction with other tools includes this screening questionnaire developed by Kopp and Gilberg and it is excellent.

THE AUTISM SPECTRUM SCREENING QUESTIONNAIRE (ASSQ)-REVISED EXTENDED VERSION (ASSQ-REV), by Kopp and Gilberg

Kopp and Gilberg found that certain single ASSQ-GIRL items are often much more typical of girls than of boys with ASC. These items include “avoids demands”, “very determined” and “interacts mostly with younger children”. The ASSQ-REV is a new assessment tool that includes a set of “girl” items.

ASSQ-GIRL, 18 new screening items believed to tap into the autism phenotype of girls

ASSQ-GIRL item No Somewhat Yes

  1. Copies you (can be in a very discrete way)
  2. Episodes of eating problems
  3. No time perception*
  4. Too much sympathy
  5. Extremely interested in pop/ rock bands, soap operas or natural disasters
  6. Avoids demands*
  7. 34 Very determined*
  8. 35 Difficulties with choice; always avoids choosing
  9. 36 Difficulties with self-care*
  10. 37 Carefree or overmeticulous as regards physical appearance/dress
  11. Naïve
  12. Comes too close to others
  13.  Interacts mostly with younger children*
  14. Engages in dangerous activities
  15. Exaggeratedly fanciful
  16. Talks without content*
  17. Writes long stories (can be in stark contrast to level of talk)
  18. Acts or lives different parts (TV stars, videos, animals)

Note. *indicates items which were considered most specific in girls with ASD (see study V)

Aspienwomanjune2015cover

I Am AspienWoman is due for release September 2015 and available for preorder at http://www.aspiengirl.com

cropped-all-books-with-award.jpg3To contact Tania for assessments, Skype or clinic consultations, problem solving sessions, workshops and presentations, book interviews, book translations, or publishing, please contact Tania at tania@aspiengirl.com

For more information about Autism Spectrum Conditions in females go to:

http://www.taniamarshall.com and http://www.aspiengirl.com

Copyright Tania A. Marshall 2015

Adult Autism/Asperger Syndrome Assessment in Females

Adult Autism Assessment in Females
Updated 14/07/2015

Autism spectrum conditions, including Asperger’s syndrome, are challenging to identify in adults. Without appropriate assessment, many individuals may go undiagnosed, without appropriate support and treatment. Girls and women are going undiagnosed or misdiagnosed. Much of the research has been conducted of males and there is a great need of research based on females compared to NT females, research based assessment tools and interventions for females. There is also a great need for these tools to be made readily accessible to professionals, other countries and other languages.

Females with Autism or Aspergers may be picked up for Autism in the teenage years with depression, anxiety or an eating disorder, if they are at all. Many females exist who are undiagnosed or misdiagnosed and continuing to have mental health problems because of this. Some are diagnosed with Borderline Personality Disorder, which may or may not be appropriate, although many have BPD traits. For adults, no-one knew of Asperger Syndrome or Autism back in their childhood. So a comprehensive early childhood and teenage autobiographical account is a very important piece of an assessment. In addition, other perspectives from people who know the person very well are important. A comprehensive assessment of an adult can include a variety of assessment tools, depending on the person.

Presently there are no adult assessment tools for females, very little research that is based on females and no specific research based interventions for females. This is a crisis for females. It is challenging for females to find a professional or organization familiar with the female autism research, how to assess females and then how to support them.

Assessment of adults explores the areas of social communication and interaction, repetitive and stereotypical behaviour, sensory issues and abilities. Feedback is provided, recommendations, resources and a “What Next?” discussion.

Generally speaking, a comprehensive adult diagnostic assessment includes the following:

An autobiographical account from earliest memories until approximately age 25 (usually 4-6 pages)
A written or typed account of why you feel you might have female Autism/Asperger Syndrome
An interview exploring present day context and day to day functioning
An exploration of the following is important:
Reasons for an assessment
Family history, including one’s own children (if any)
History of mental health, previous medical, psychiatric, psychological and psycho-educational history (previous IQ test and/or educational assessments), previous diagnoses and/or learning disabilities
Reading of previous reports, letters, hospital admission notes
Educational history
Social communication and relationship/friendship history, use of social strategies
Identity or persona (s)
Work history
School report cards, school/teacher comments
Childhood photos
Abilities, gifts, strengths, talents and/or skills (some examples include samples of poetry, art, blog, short stories, books, singing and/or musical ability, acting, comedy routine, degrees and/or thesis/dissertation work, samples of jewellery, clothing or costumes, website, awards and so on)
Over-excitabilities, sensory sensitivities, self-soothing or stimming behaviors, sensory processing disorder and/or synaethesia
1-3 other perspectives from other persons who know the person really well
An exploration of personal journal entries, autobiographical and/or blog entries
Results of specific adult Autism assessment tools and other tools, completed by the person and also dependent on the person being assessed and the context
Other conditions (for example,  Auditory Processing, Irlen Syndrome, Ehlers Danlos Syndrome Hypermobility type Syndrome, food allergies)
So, when someone receives a diagnosis, what then?
A positive assessment or diagnosis is just the beginning.It is never to late to receive a diagnosis and the benefits outweigh any disadvantages.
A “What Next” section is very important, and may or may not involve the following,  again dependent on the person, their situation and context of their life. Discussions of the following may include:
Self awareness and understanding
Education and highly recommended resources (may include academic books, websites, research, researchers, webinars, etc)
Attitude
Strengths
Challenges
Recommended helpful therapy
The Social Spectrum
Referral to other professionals, professional support groups, etc.
Many adults have lived and died not knowing they had Autism or Asperger syndrome. Some benefits of an adult diagnosis include:
Knowledge and self-understanding of oneself and also for family members, friends, co-workers and/or partners
Access to appropriate therapy, medication, support and services
An answer for past experiences and challenges
Permission to ease up on oneself
Possible prevention of other conditions or disorders (i.e., personality disorders, difficulties distinguishing between reality and fantasy), difficulties with work, the law and court system and/or suicide
Prevention of mis-directed treatment
Learning about how one thinks (see the Autistic Brain, by Dr. Temple Grandin)
Identifying strengths, abilities and gifts
There are both benefits and costs to disclosing a diagnosis. Disclosure should be considered thoughtfully and used only if there is is potential benefit.
Who should I look for to help me? How can I find someone to help me?
Today, there are few professionals in the world trained and experienced in assisting females. At this time, the most important factor to look at is “Does the professional have both experience and training in the area of female autism”? Are they aware of the inherent gender bias? What types of assessment tools do they use? What is involved in an assessment? Do they use adult assessment tools? (Yes, I have had two clients tell me that child assessment tools were used on them).
I have developed a database of professionals who work with females which can be found at and is being updated on a regular basis at http://taniamarshall.com/female-asc-professionals.html
Please contact me at tania@aspiengirl.com if you or you know of someone who would like to be added to this database.
Common Pathways to an assessment or diagnosis
Having a child being assessed or who is formally diagnosed with  Autism
Difficulties with work or a current relationship
Discovering and learning about female Autism
A family member has recently or in the past received a diagnosis
Coming across information on Autism and identifying with it in oneself
I have read your writings and book I Am AspienGirl and it fit like a glove. Can you provide an assessment for me?
Yes, Tania regularly provides comprehensive impressions assessments across the lifespan. The vast majority of adults (both male and female) Tania has assisted are wanting a self-diagnosis confirmed formally. She is also in touch with other professionals who work in this area and also regularly refers to other appropriate professionals at the appropriate time. She can be reached at tania@aspiengirl.com
I really identify with the writings available on female Autism but I am not sure I want a diagnosis? Is Tania available to for sessions other than assessment?
Yes, Tania regularly provides services which may focus on assessment, diagnosis, problem solving, the pros and cons of a diagnosis, the pros and cons of disclosure, career directions, managing stress, anxiety, sensory sensitivities, “What Next” after a diagnosis, the different types of Autistic thinking, gender dysphoria, social difficulties and social skills, relationship difficulties, synaethesia, hyperempathy and the topic of being an “empath”.
For more information about the adult female phenotype, the sequel to the eLIT Gold Medal Award winning I am AspienGirl, entitled I Am AspienWoman: The Characteristics, Traits and Abilities of Adult Females on the Autism Spectrum is in press and due for release September 2015 and is based on her blog entitled “Aspienwomen: Adult Women with Asperger Syndrome. Moving towards a female profile of Asperger Syndrome”

Tania A. Marshall is an award winning author, an ASPECT Autism Australia National Recognition Awards Nominee (Advancement category) and a psychologist. Her first book, I Am AspienGirl: The Unique Characteristics, Traits and Gifts of Females on the Autism Spectrum, Foreword by Judith Gould, UK, is a Amazon best-seller and a 2015 IPPY eLIT Gold Medal Book Award Winner.

I Am AspienGirl has been translated into both Spanish and Italian (release dates of July and August 2015 respectively). Additional completed translations include: German, Japanese and Brazilian Portuguese. Other languages currently under completion include: Dutch, French, Norwegian (by SPISS), Hebrew and Chinese.

Tania has completed the sequel to I Am AspienGirl, entitled “I am AspienWoman: The Unique Characteristics, Traits and Strengths of Females on the Autism Spectrum, foreword by Dr Shana Nichols (lead author of Girls Growing up on the Autism Spectrum). The release date is approximately September 2015. This book includes a section of 24 females, all diagnosed as on the Spectrum, showcasing their strengths and also offering important advice to others.

Tania is an Australian psychological society (APS) autism identified medicare provider,
helping children with autism (HCWA) early intervention service provider, a better start early intervention provider and an Australian government medicare approved mental health provider. She is also a trained Secret Agent Society (SAS) social skills practitioner.

Tania can be reached at tania@aspiengirl.com for clinic or Skype remote assessments, consultations, problem solving sessions, interviews, book translations, presentations or workshops. She divides her time between busy full-time private practice, research and writing her book series.
Tania’s other books include:
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Sample chapter of I Am AspienWoman: The Unique Characteristics, Traits and Gifts of Adult Females on the Autism Spectrum

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Drawing from years of practitioner experience, Tania Marshall takes you inside the world of adult females with Autism or Asperger Syndrome. Using a highly visual format, this book combines powerful imagery and an insiders own words to showcase the complex profile of females with an Autism Spectrum condition. Included is a large Mentor section of positive and powerful women headed by Dr. Temple Grandin. Each woman discuss their strengths, their careers and provide important and helpful advice for women on the Spectrum. The focus of this book is on the female phenotype. Available in eBook, paperback and a special edition hardcover version, approximately August 2015. Pre order now at http://www.aspiengirl.com

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table of contents

crowd Growing Up Quietthe world

tomboys

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FashionDiva costume steampunkengineer

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Preorder at http://www.aspiengirl.com

For more information about female Autism go to http://www.taniamarshall.com or view the Free sfari webinar entitled The Female Autism Conundrum on gender bias at: http://sfari.org/sfari-community/community-blog/webinar-series/2015/webinar-the-female-autism-conundrum

Coming 2016

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Behind the Mask is a book for professionals and explores the themes of a large group of females across the lifespan. Drawing from years of practitioner experience, Tania Marshall takes you inside the world of females with Autism or Asperger Syndrome. Using a combination of academic research and autobiographical accounts, this books explores the female phenotype. More specifically, the who, how, why, when and where of a large group of females who utilize a variety of strategies and abilities to hide their Autism. Masking strategies, social echolalia and chameleon abilities are discussed. The advantages and disadvantages of these strategies are discussed.

Chapters discuss particular non-verbal and verbal characteristics to look for, particular questions to ask, and include helpful modifications to practitioners offices or clinics and professional approach.


Available in eBook, paperback and a special edition hardcover versions, 2016, at http://www.aspiengirl.com

Cover by Ardent Studios and Model Samantha Tomlin

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Female Autism Infographics

Female Autism Infographics to share for awareness and education. More Coming

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For more information go to:

http://www.aspiengirl.com

http://www.taniamarshall.com

To contact Tania regarding consultations, assessment, problem-solving strategies, Skype consultations, book distribution, interviews, book translations, publishing queries, please email her at tania@aspiengirl.com

Young Female Autism: Commonly Observed Characteristics, Traits and Gifts

Commonly Observed Characteristics, Traits and Gifts of Young girls and Teens with Autism Spectrum Conditions

eLIT Independent Publisher IPPY Gold Award Cover

Best Selling I Am AspienGirl wins a 2015 eLIT Independent Publisher IPPY Gold Award

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Social and Friendship

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Tania A. Marshall is a 2015 ASPECT Autism Australia National Recognition Award Nominee (Advancement Category) for her work in advancing the field of female autism. Her first book was recently awarded a 2015 eLIT Independent Publishers IPPY Gold Medal Award. Tania is available to provide assessment, diagnostic impressions, referrals, intervention, problem solving and/or support in person or via Skype or other means. She is also available for interviews and presentations and can be contacted at tania@aspiengirl.com

For more information, go to:

http://www.taniamarshall.com

http://www.aspiengirl.com

Sfari Webinar: Summarizing The Female Autism Conundrum and my Thoughts

Webinar: A Summary of The Female Autism Conundrum

By Tania. A Marshall, M.Sc. (App. Psych), Assoc. MAPS

Thank you to Sfari.org and female Autism researcher and experts David Skuse and Will Mandy for presenting a fascinating webinar discussing the gender bias.

Part One by Dr. David Skuse

More individuals who are termed “high functioning” are now being assessed and diagnosed. If Autism is defined by the male stereotype, then females are going to be missed and disadvantaged. We, and other professionals working in this area, believe a serious gender bias exists. So, where is the evidence that we are missing females?

  1. Studies are not recruiting a representative sample of females with Autism and therefore are making spurious conclusions.
  2. The under identification of females with Autism Spectrum Condition (ASC) with average IQ
  1. A South Korea Study screened approximately 55,000 school age children and found that the overall prevalence rate was 2.5:1 for male to female.
  2. A National Health Statistics Report (2013) found that changes in the prevalence of parent reported Autism Spectrum in school-aged children found that there was an 80% increase in the identification of school-age boys with ASC in the 5 year period as opposed to only a 43% increase in identification of school-age girls.
  3. By 2013, approximately 1 in 30 boys in the United States of America had been given a diagnosis of Autism Spectrum Conditions and ONLY 1 in 140 girls had been given a diagnosis of Autism Spectrum Conditions and this is most likely an underestimate. School-ages children (mostly boys) were largely responsible for this increased prevalence. Largest increase is between 14 and 17 years
  1. Identifying, ascertaining and assessing teenage females with Autism Spectrum Conditions if particularly challenging and problematic. Why is this?
  1. Compensation: Females from preschool onwards are much more aware to social behaviours and norms Girls are less able to identify due to their superficial social skills, fewer social communication issues, less stereotyped behaviours and/or unusual motor behaviours
  1. Co-existing Conditions: The majority of females internalize their problems with depression, eating disorder, depression and a lack of “conduct” or behaviour problems and less ADHD in school, but behaviours are often seen at home. Boys are often picked up earlier due to their disruptive behaviours at school.
  1. Biased recording of behaviours, symptom profiling, using standard instruments and tools. Autism has been defined as a male stereotype. Girls have less repetitive and stereotyped behaviours and less motor behaviours.

If Autism is defined by the male autism stereotype, we will not find the girls. The definition of Autism is based upon the male stereotype and there is biased identification

Examples from the Interests and Behaviors section of the ADI-R

  1. Is she unusually interested in things like metal objects, lights, street signs, or toilets? No, she is obsessed with Justin Bieber!
  2. Does she play with the whole toy or seem more interested in part of the toy (e.g., spinning the wheels of a car or opening and shutting the door? No, sheis obsessed with her doll’s hair
  3. Does she have anything to which she is particularly attached, such as a pieve of pipe, a clothes peg or a stone? No, but she does have a collection of 2000 soft toys which are all pink, makeup collections, stationary items (my observations are erasers, pens, pencils, journals)

A population survey of gender differences in Autism traits which was a whole population epidemiological survey of autistic traits called the Avon Longitudinal Study of Parents and Children (ALSPAC), Bristol, UK. All participants were screened with the Social Communication Disorders Checklist (SCDC). Results showed that there were not dramatic differences by gender in parent’s answers on the questions. The results showed a 1.9:1 ratio for boys to girls.

Can females with high verbal IQ compensate for their ASC traits? Yes, females may compensate to some degree.

Females are at high risks of developing co-existing psychiatric disorders in response to social adjustment difficulties in later life.

In secondary school, females often become alienated, depressed and/or suicidal. They may become obsessed with people (to the point of stalking) or self-harm. Obsessions with people are common and can be towards professionals (doctors, psychologists, a best friend) with use of the Internet used to stalk the professionals, their families or their webpages.

The definition of ASC is based on the “male” stereotype. Current diagnostic criteria and the way it is implemented in research and clinics and assessment tools are biased against females and a large proportion of girls are missed in assessment or not included in the research.

We need to develop a better understanding of the ASC female phenotype which is founded on empirical and scientific information.

Ascertaining and assessment of girls with and ASC in the teenage years if particularly problematic.

Part Two by Dr. Will Mandy

We need to understand the female Autistic phenotype

Current ASC assessment processes are biased against females

A disproportionate amount of girl are underdiagnosed and/or misdiagnosed and incorrectly excluded from research studies

The current DSM5 on page 57 now states ”girls without intellectual impairment or language delay may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties”

The key task is to develop a better understanding of the autistic female phenotype founded on empirical and scientific investigation. So, what does current research, clinical experience, anecdotes, a network of collaborations with professionals and narratives by females with Autism themselves say?

The Autism Female Phenotype and distinctive tendencies, patterns and trends (some males have traits of the female type and vice versa).

  1. Females with ASC are more socially motivated than males with ASC, more typical and gender stereotyped interests (Hiller et. al, 2014). Females show greater interest in people and initiate friendships more.
  2. Female obsessions or focused interests include: fashion, people (peers or celebrities or professionals), Barbies, hair, animals, Manga and Anime
  3. More vulnerable to internalizing disorders and are prone to Eating disorders like Anorexia Nervosa, anxiety, depression and less likely to have conduct issues outside the home (Mandy et. al, 2012, Mandy & Tchanturia, in press)
  4. Social difficulties are misattributed to shyness or social anxiety
  5. Greater ability and capacity to “camouflage” and/or hide their autistic tendencies (Lai et. al, 2011)
  6. Gender differences play out or appear across the lifespan, in a developmental context. The greatest risk in gender differences across the lifespan is the issue of females; the greater female risk of missed diagnosis in the young, in pre-schoolers, in adolescence and into adulthood.
  7. Friendships: Girls are often ignored by others rather than rejected
  8. Female autistic difficulties are underestimated in school
  9. A much greater risk for anxiety and depression in primary school and then eating disorders in adolescence and sexual exploitation
  10. Camouflage: the “masking” of ASC behaviours in social situations and/or the performance of behaviours to compensate for difficulties associated with ASC
  11. Masking: Can be conscious (deciding to suppress stimming behaviours in public as they attract negative attention (Mandy & Tchanturia, 2015) or automatic (“doing social mimicry against whomever I’m with. I guess it’s like a cloaking device…I had no idea I was doing it until I as diagnosed”) (Bargiela & Mandy, in press)
  12. Acquisition of new skills and capacities to compensate for autistic difficulties and can be conscious (copying popular peers, dress, gestures, talk and practice it over and over at home; Mandy & Tchanturia, 2015) and unconscious (implicit learning from social experience; “it used to take me weeks to figure out what I had done wrong, but now I know pretty much immediately” HM, 15 years old)

What processes underpin camouflage? What drives the capacity to drive and adapt?

  1. Social Motivation
  2. Socially focused special interests; for example, psychology, anthropology, Jane Austen novels to crack the “social code”, to develop strategies to function socially
  3. Socialization experiences and pressures; the social pressures and expectations placed on women as opposed to men
  4. Executive control: the ability to inhibit, shift and generate plans
  5. Better social imitation and awareness
  6. Better Capacity for reflection
  7. Higher intelligence quotient and using intelligence to camouflage

So is Camouflaging a friend or foe? Both

The Pros include: allow people to function better in the workplace, in the social context, can open up a social world of friendships and can be a form of personal development/self-help

The Cons include: Exhaustion, loss of identity or identity confusion, underestimation of needs, missed and mis-diagnosis

At what age does female compensation start?

It begins in early childhood and breaking down in early adolescence, with adolescent talk and chit-chat being very exhausting, boring or uninteresting. Young girls have to learn from a very young age that you have to be nice, sweet, hug your relatives, act normal, develop a face you can put on and often acting convincingly so, which then makes it so much harder to get a diagnosis, leading to the theory that girls don’t get Autism or get is much less than boys.

Q & A Session with David Skuse and Will Mandy

  1. Q: What does all this mean in the context of early intervention?

A: Information from at-risk siblings revealed if assessment is done skilfully it can be picked up early in females. No evidence of intervention for females. The focus is on co-existing conditions or disorders. It is I,[perative to screen adolescents with anxiety, depression, self harm or eating disorder for an Autsim Spectrum Condition

  1. Q: If someone is able to camouflage e and there functioning better, what does this mean in terms of intervention and getting better, can this be seen as getting better?

A: People often find their own affective ways and strategies of handling difficulties. We need to be aware of the consequences (i.e. lying down in the foetal position after a demanding day pom arriving home). Many adolescents strive to be model students at school and all hell breaks loose at home. Parents are concerned and mental health blame the parents because they are not causing difficulties at school , which them leads to family therapy and parenting programs for the parents. This is sometimes seen in primary or elementary school

  1. Q: Is there a higher percentage of Gender Identity issues in females with Autism?

A: There is small growing literature on gender identity issues in females with ASC, but we are not aware of how common the wish to change gender is.

  1. Q: In the parent reported study you mentioned they weren’t formally diagnosed?

A: The Korean study ascertained cases that had not been diagnosed in the general population. A small proportion of those in the general population had been ascertained as being autistic. A lot of kids were picked up as school aged children, particularly girls who had not been picked up earlier as in clinically diagnosed. In the Bristol one, we screened at 8 and by mid-adolescence virtually everyone who had a diagnosis at that time had been picked up as having a high score in our survey and of course there were lots of children on our survey, the vast majority, almost all of them up with them, those who scored as high on the Social Communication Traits of an Autistic type may well have had secondary psychiatric problems during adolescence but those data are still being analysed

  1. Q: Are there any resources in particular for supporting suspected or maybe undiagnosed girls, teens, women for females, that are suspecting that they themselves or someone else

A: We are not aware of anything here in the UK. We have similar problems in the UK are almost certainly not being picked up and even if they are, the resources to help them are very limited indeed under the National Health Service (NAS). There is enormous popular literature on being a female with ASC. It is worth checking out the work of Tony Attwood on this topic and Tania Marshall and people like that. We are at the stage of interesting, rich and powerful descriptions of the female phenotype but now we need to get a proper evidence base that reflects scientific testing of all these ideas coming out in the literature and to my knowledge those studies haven’t been done yet.

Some thoughts from me

It is wonderful to see clinical anecdotal and qualitative evidence and evidence-based research merge. Thank you to Sfari, Greg Boustead, Dr. David Skuse and Dr. Will Mandy for an excellent webinar.

I do think an issue that makes it challenging for professionals pick up females is a lack of understanding about the female subtypes. Within a large group of autistic females, this can be seen clearly. Some examples follow and I am writing about subtypes in a future book.

1. The Blender. Shy, quiet introverted, maybe mute at times type. This type blends into the wall or the furniture. You often do not know she is there. May be misdiagnosed with social anxiety. If often on her own or follow others

2. The talker. Loud, more controlling and rule-bound, extraverted type who may come across as having ADHD, may control the relationship

3. The flitterer, goes from group to group with no solid friends and goes unnoticed

More to come about subtypes in upcoming book series

Collections can often involve also stationary items; the collecting of erasers, pens, pencils, journals and similar items.

There is still much to learn about female autism and I encourage those with an interest in this area to possibly research the following areas:

Motherhood and Autism

Gender Identity and Transgender

Autism and the sex trade

Body Dysmorphic Disorder

Sensory Processing Disorder in females with Autism

Mature females with Autism

For more information on the female phenotype, the best-selling book entitled “I Am AspienGirl: The Unique Characteristics, Traits and Gifts of Young Females on the Autism Spectrum” is available for order now. The sequel entitled “I am AspienWoman: The Unique Characteristics, Traits and Gifts of Adult Females on the Autism Spectrum”, with a large Mentor section of real-life adult females headed up by Dr. Temple Grandin, is being released shortly. Both are available from www.aspiengirl.com or Amazon

Tania A. Marshall is a Tania Marshall is a 2015 ASPECT Autism Australia National Recognition Awards Nominee  (Advancement category), a best-selling author, psychologist, autism consultant and free lance writer.

eLIT Gold Award Cover

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For more information on female Autism, please visit http://www.taniamarshall.com

Please follow these female autism researchers:

Will Mandy

David Skuse

Rachel Hiller, University of Bath

Christopher Gillberg and Svenni Kopp

Judith Gould

Meng Chang Lai

Simon Baron Cohen, University of Cambridge

Francesca Happe

Marianna  Murin and Rebecca Chilvers from Great Ormond Street Hospital