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.

Young Female Autism: Commonly Observed Characteristics, Traits and Gifts

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

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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.

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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

Predictors of Success Factors: A Phenomenological Pilot Study of Females with Asperger Syndrome Pilot Study

Predictors of Success Factors: A Phenomenological Pilot Study of Females with Asperger Syndrome Pilot Study (2013-2014)

In early 2014, Dr. Amanda Webster and I were involved in a Pilot Study entitled “Predictors of Success Factors: A Phenomenological Pilot Study of Females with Asperger Syndrome Pilot Study”

We wanted to first interview a small group of females diagnosed with Autism within Australia, with the exclusion criteria being that no participant was assessed or diagnosed by either Dr. Webster or myself. The goal was to then to interview a much larger group in a variety of other countries.

Brief project description

Details

There exists a great need to understand Asperger Syndrome/Autism from the point of view of the adult female, diagnosed with the condition. So far, research has mainly focused on the male presentation. This pilot project aims to give females with Autism a voice, through telling their lived experience/stories.

The primary outcome of this pilot study is to begin identifying internal and/or external factors or predictors that were crucial in leading females with Asperger Syndrome to achieve success in life. This project is designed to capture the meaning of several adult females of their lived experience of Autism. The outcome of this study will be achieved through interviewing adult females who have a formal diagnosis of Autism. Females will participate through the use of telling or sharing their story about living with Autism. The participants will describe their experiences of living as a female, with Autism, in writing, or spoken form. In particular, what helped or hindered them in their life journey, to date, in terms of having a successful life.

Information gathered will be used to develop early intervention recommendations, provide knowledge and information about Autism in adult females including: assessment and diagnosis, late diagnoses, benefits of earlier diagnoses, the need for and the barriers to accessing diagnosis and interventions/therapies, accessible and affordable  interventions.

Inclusion criteria: Must not be known to either researchers in a professional way, must have had a formal diagnosis prior to participating in the Pilot Study by a professional other than the researchers.

E3. Participants

Details The target participant group is adult females with a formal diagnosis of Autism (Asperger Syndrome), in Australia. Individuals within the target group will be invited to participate in interviews over a three month period (late September  to December, 2013). Advertisements will be placed on Facebook, in Australian Autism groups or organizations.

E4. Data collection

Details A phemenological inquiry method similar to that used by Moustakas (1994) to gather stories from adult women, will be utilised to gather information from females with Asperger Syndrome. The Griffith research team will introduce themselves and provide a general overview of the project. Individuals will be provided with information sheets about the project including discussion topics. Participants will also be informed that a sound recording will be made of the interviews for transcription purposes only. Time will be given for participants to discuss and ask questions about the information provided.  Participants will also be given the option of scheduling an individual session at a location of their choice or of telling their story in written form and submitting this by e-mail or post to the research team. To get at the essential meaning of the experience, abstracting out of themes will occur. This will continue until a full abstraction and presentation of themes essential to the participants lived experience. Only then can we be able to present the unique experience in a way that is understandable & recognizable to other adult females with Asperger Syndrome. Any individual differences will be noted (for e.g., a participant(s) may be gay or transgender, and this would represent individual differences within the group. We aim to glean the essences of being a participant with Autism.

E5. Informed consent

Details The interviews will only proceed if the participants provides their full and informed written consent. It will be made clear to all participants that they are welcome to remove themselves from the research process, at any time. It will also be made clear that all identifying information will be removed from the information collected before it is analysed and published. Publications will only occur with participant’s full and informed consent. If participants feel their information should not be used, we will organise for their information to be destroyed or returned to them.

E6. Communication of results / reporting

Details Following examination and analysis of transcripts, participants will be invited to follow-up meetings organised by the Griffith research team, to discuss the findings and obtain feedback.

From these meetings and/or interviews,

The information may also be published in peer-reviewed journals and in a book highlighting the stories presented.

POSSIBLE QUESTIONS INCLUDED:

  1. Please tell me what your formal diagnosis is and any co-existing conditions.
  1. Please tell me about what the process was like for you, in terms of getting your formal diagnosis.
  1. Please tell me how your life has been since your formal diagnoses, as opposed to how your life was before you were diagnosed. Please be detailed in your description as possible.
  1. Please tell me about any significant mentors or positive events in your life. How did they make a difference?
  1. Please tell me about any significant negative people or negative events in your life. How did they make a difference or contribute to where you are now in your life? Please be detailed in your description.
  1. Tell me how you function in a world full of Neurotypicals. Please provide a full description of your experience, including your thoughts, feelings, images, sensations, memories, along with a description of the situation in which your experience occurred.
  1. What context or situations have typically affected or influenced your experience of Autism?
  1. Tell me the affect that Autism has had on your lived experience?
  1. What is the experience of living with Autism like?
  1. How did the idea that you had Autism come about? What was the experience of the assessment process and the ultimate diagnosis like for you? What was it like telling others about it? How did you announce or tell others about Autism? How long time wise did it take you to accept the diagnosis? Or, had you always somehow just known, and receiving the diagnosis just solidified it for you?
  1. In what way are the themes of males different from females?
  1. Please describe, in detail, a situation or event in which you felt was significantly altered the course or outcome of your life, to date. Be as specific and detailed as possible.
  1. How has your diagnosis altered or impacted your life? Positively? Negatively? Describe in detail any changes that occurred post-diagnosis.
  1. Describe what have you experienced, in terms of a female adult, living with Asperger Syndrome?
  1. Tell me about accessing intervention/therapy post-diagnosis.

Research Questions

How do the participants describe their experiences of living with Autism?

How do the participants understand and make sense of their experiences of Autism?

How are individual differences reflected in the participants accounts of their experiences of Autism, (late diagnosis)?

How do women with a late diagnosis of Autism describe their lived experiences of Autism?

What is the nature of the experience of being an adult female with a late diagnosis of Autism?

What is it about being female and having Autism versus being male with Autism?

References

Moustakas, C. (1994). Phenomenological research Methods. Thousand Oaks, CA: Sage

This Pilot Study has now concluded

To reach Tania, please contact her at tania@aspiengirl.com

For more information about female autism please visit:

http://www.aspiengirl.com

http://www.taniamarshall.com

Announcing I Am AspienWoman: The Unique Characteristics, Traits and Gifts of Adults Females on the Autism Spectrum

I Am AspienWoman: The Unique Characteristics, Traits and Gifts of Adults Females on the Autism Spectrum

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After “I Am AspienGirl” was released in June 2014, it went to #1 in 3 categories on Amazon. The AspienGirl team was inundated with emails, stories, messages and letters. Many of them were from females themselves or from their family members, their loved ones and professionals. We received pictures, poetry, art, short and long stories. We had people, of all ages, wanting to be a part of the Be Your Own Superhero Project. We received messages from a number of countries wanting to know more about female Autism, offering their translation skills to assist in getting the information made available in other languages and/or wanting to know where to go to start the process of an assessment. Messages came in from parents and professionals saying they were using the book to explain the diagnosis or as a reference/starting point for explaining or discussing certain characteristics. Many of the messages or testimonials coming in positively referred to the format of the book, in particular the use of images and verbatim quotes which combined together showcased particular traits, characteristics or talents.

What we learned was that there is a desperate need all over the world for more trained professionals, more adult female research based on females and comparing females with Autism to their neurotypical peers, more information regarding the internal experiences of a large group of females on the Spectrum, more information about the female sub-types, and a huge need for assessment tools, resources, intervention and support designed specifically for females. Current assessment tools appear not to be suitable or designed to identify particular features of Autism spectrum disorder/condition in females.

This book is written for four types of readers. First, this book was written for the general population (neurotypical people), to explain the internal experiences and the unique characteristics of adult females with an Autism Spectrum Condition (ASC). Second, this book is written for the female who may just be starting her journey to understand that she may too, be on the Spectrum herself. Many adults are unaware that they are on the Autism Spectrum. Third, this book is for individuals who are self-diagnosing or with a formal diagnosis who may feel this book may help explain their uniqueness and characteristics to themselves and/or to their loved ones through sharing it with family members, partners, friends and/or colleagues. Lastly, the book is written for professionals, to assist them in understanding the newly emerging Autistic female profile and in their work with their clients.

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Cover of I Am AspienWoman

I Am AspienWoman: The Unique Characteristics, Traits and Gifts of Adults Females on the Autism Spectrum is written by Tania Marshall, MSc., and the second in the AspienGirl book series. This book continues where I Am AspienGirl left off, detailing the newly emerging female phenotype as it often presents in adult females. This highly visual book presents stunning images combined with verbatim quotes by females on the Spectrum, that combined characterize and illuminate the unique strengths and challenges of the this “lost generation” of females. The images and quotes highlight a range of areas including: early memories, cognitive/personality type, sub-types, social, education, sensory sensitivities, emotional, communication/language, work, common interests, gender, family, and relationships, strengths, challenges, stages leading up to and after diagnosis, important AspienWoman needs and an inspiring section of 25 real life AspienWoman Superhero Mentors headed up by Dr. Temple Grandin. Also included is a strengths based exercise and some important references/resources.

Growing Up

Sample Page of I Am AspienWoman

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Sample Page of I Am AspienWoman

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Sample Page of I Am AspienWoman

In celebration of the upcoming release of I Am Aspienwoman, we are offering $5.00 off, from now until release day. Pre-order you copy now at http://www.aspiengirl.com/english/i-am-aspienwoman-paperback

Available in eBook, paperback and a stunning Hard Cover edition. Dont forget to use your $5.00 off Code: #aspienwoman

You can also sign up for the AspienGirl newsletter and/or become an affiliate of the book series and earn 10% for every book your refer

For all inquiries regarding in-person or Skype diagnostic assessments or consultations, interviews, presentation and/or translations, please contact Tania at tania@aspiengirl.com

For furthur information:

http://www.aspiengirl.com

http://www.taniamarshall.com

The Female Autism Crisis: Why are Females Being Missed and What Do We Need To Do About It?

The Female Autism Crisis: A Brief Look

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Female Autism is a relatively new and complex area of research and as such, little is known. The steady collation of anecdotal and autobiographical reports and some current research are hinting at different presentations, phenotype or a “female profile” and when assessed with “male-biased” or male-centric tools, many females are slipping through the cracks.

Anecdotal, clinical and autobiographical reports suggest that there may be ‘female phenotypes’ of autism. Empirical studies and qualitative differences are starting to show show that females ‘meet the diagnostic criteria’ in different ways from their male counterparts. This leads to females being misdiagnosed, mistreated and/or medicated. So, what are some of the issues?

1. A lack of assessment tolls created for females across the lifespan The ADOS, considered to be the gold standard of testing, may show elevated traits, but not enough to meet the criteria for a diagnosis. Females are often missed because they do not meet the cut-off score, although there are often clues in the ADOS results. Females can have the ability to discuss many social-emotional areas by responding cognitively well. However, many parents, school officials, and.or professionals have found that those social-emotional areas are not often displayed or used adequately, and often then, see the individual using other strategies to cope. It appears that the characteristics and traits as captured by “gold standard” assessment tools may be male-biased due to the gender-centric items that contribute to the scoring. A further comprehensive assessment then reveals the individual does meet criteria for Autism or Asperger Syndrome.

2. Females often can and do engage in superficial conversation, make good eye contact and conversation, for the first initial session or hour. This can confuse professionals who are used to seeing social clues more immediately and who may think that a female is “too social”.

3. A lack of understanding regarding coping strategies, compensatory strategies, masking behaviors and the more subtle presentations. Female body language can be expressed quite differently as they learn to act, pretend, mask and compensate for their social difficulties.

4. A lack of understanding of the female phenotype/profile as (for example, females have less repetitive and restricted interests) and gender differences

5. A lack of trained professionals working in the area of female autism

6. Confusion as to the diagnostic overshadowing, for example, whereby a female may be diagnosed may be told she is “shy” rather than “social anxiety”, may be diagnosed with an “eating disorder” rather than Autism.

7. A lack of understanding how females with Autism present across the lifespan

8. A lack of both quantitative and qualitative data and research regarding females

9. Co-occurring conditions can make assessment a complex and challenging process for diagnosticians working with adults. Whilst many adults have been or are misdiagnosed with a personality disorder, there are adults with both Autism and a personality disorder

10. A lack of knowledge about the heterogeneity within the female group and the variance in how it presents. There exist different subgroups in females with Autism and range from a more “male” autism profile-type presentation (maybe diagnosed earlier) to those with many “masking” characteristics, where professionals or family members may not believe the person who is telling them about their diagnosis. The female group as a whole consists of much heterogeneity and thus females can present in sub-types (for example, a tomboy, a fashion princess, a bookworm professor type, the athlete). This further causes confusion for diagnosticians who are not familiar with the range of presentations within female Autism (often diagnosed much later, if at all). There is a tendency for an “obsession” to become the person’s identity.

11. For some young females, the need does not appear to be “obvious”, or the “issues” are misinterpreted, UNTIL the teenage years. Presenting concerns may be construed as something else or generalized. For example, “all kids have social issues”, “she”ll grow out of it”, “all kids have problems”. Some females present with an eating disorder and are not screened for Autism traits.

12. Some common misconceptions or myths about female Autism can contribute to this issue: “She can make friends, make eye contact and socialize, so she can’t have Autism” “She is too sensitive, so she can’t have Autism” “She holds down a full-time job, so she can’t have Autism” “She has too much empathy so she can’t have Autism”

13. Females tend to exhibit better expressive behaviors (reciprocal conversation, sharing interests, integrating verbal/nonverbal behavior, imagination, adjusting their behavior by situation) despite similar social understanding difficulties as males), present with different manifestations of friendship difficulties (better initiation but problematic maintenance, overlooked rather than rejected by peers, better self-perceived and parent-reported friendship), and different types of restricted interests and less repetitive use of objects.

14. Some common female differences include: less repetitive behaviors, a greater awareness of the pressure and desire for social interaction, a passive personality, often perceived as “shy”, a “loner”, a tendency to imitate others (copy, mimic, or mask) in social settings, a tendency for social exhaustion (or as I like to call it a “social hangover”), a tendency to “camouflage” their difficulties by masking and/or developing strategies to compensate for the challenges and difficulties they are facing, a tendency to have 1 or few close friendships, a tendency to be “mothered” in a peer group in primary school, BUT often bullied in secondary/high school.

Communication: Better linguistic abilities, developmentally more imagination (fantasizes and escapes into fiction and pretend play, but is prone to being nonreciprocal, scripted, and over-controlled)

Restricted, repetitive patterns of behavior, interests, or activities tend to involve people/animals rather than objects/things (e.g., animals, soap operas, celebrities, pop music, fashion, horses, pets, and literature), which may be less recognized as related to autism

Tendency to be perfectionistic, very determined

Tendency to be controlling (in play with peers) High (passive) demand avoidance Tendency to have episodes of eating problems/eating disorders

15. A lack of understanding sensory sensitivities and how they impact the ability to function from day to day. In particular, professionals may be more likely to view an individuals’ comments about how they perceive the world “psychotic” rather than sensory processing disorder.

16. Diagnostic confusion and not asking the right questions or clarifying what the client has said. Many adult women have multiple labels or diagnoses. As mentioned previously, a lack of understanding as to how sensory sensitivities affect an individual can lead to misdiagnosis. Having a fantasy world and imaginary friends or animals can lead professionals to suspect prodromal schizophrenia in a girl or adolescent. A girl who has developed routines and rituals around food and calories, nutrition and/or exercise may only be diagnosed with Anorexia Nervosa and the Asperger Syndrome is missed. Borderline Personality Disorder is a common misdiagnosis with females usually not fitting neatly into this diagnostic box. Professionals may not understand that many females have the ability to “feel” other people’s feelings and this can be quite overwhelming for them. Females may not trust others due to the cognitive dissonance apparent in their non-verbal body language and what she “feels” off them. This coupled with social and relationship challenges can lead her behaviors looking like Borderline traits.

17. Cultural or migrant bias can leads to under-identification. For e.g., some immigrant women have been unable to gain an assessment  as their differences in communication and behavior are not seen or viewed as unusual.

Tania can be reached for fee-for-service diagnostic impressions assessments (in person or Skype), consultations and/or support, interviews and/or presentations at tania@aspiengirl.com

Tania divides her time between private practice, research and writing her books series

To subscribe to the AspienGirl newsletter or to become and affiliate and earn 10% on all books referred, go to http://www.aspiengirl.com

To purchase I Am AspienGirl or preorder I Am AspienWoman, AspienPowers or I Am AspienBoy, go to http://www.aspiengirl.com

For more information about female Autism or female Asperger Syndrome go to http://www.tania.marshall.com

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Hello, from Team Aspiengirl to you. Have an enjoyable Holiday season from us to you. Massive eBook sale on starting NOW at 75% off!

Hello, from Team Aspiengirl to you. Have an enjoyable Holiday season from us to you.

Massive eBook sale on starting NOW at 75% off, 1/2 off the Amazon bookstore prices. eBooks only! This is www.aspiengirl.com‘s cheapest female autism/autism eBook sale starting now on ALL Aspiengirl eBooks from the Series, released and pre-orders, at www.aspiengirl.com, including I Am Aspiengirl, I Am Aspienwoman Book, Aspienpowers Book and I Am AspienBoy Book Series at www.aspiengirl.com. The sale is guaranteed cheaper than Amazon prices and is valid for the Christmas limited time period, as a thank-you for all your support in 2014. Each individual eBook is 75% off, so that’s $5.00 AUD per e-book. If you order all 3, which are regularly $44.99, you will receive I Am AspienGirl immediately and the 2 pre-orders of I am a AspienWoman and AspienPowers later, all 3 e-books for $11.25 AUD!*****

Please go to http://www.aspiengirl.com/ebookspecial
CODEWORD: ebook

If for any reason the link within your receipt does not work, please email us at tania@aspiengirl.com and we will fix it as soon as possible.

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Don’t forget out brand new Planet Aspien App full of resources from radio interviews to 3 developmental female Asperger Syndrome screeners to meditations, to our blog to Be Your Own Superhero Project (BYOSP), to free book sample chapters, and weekly updates by Team AspienGirl’s webmaster, only $1.29

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We wish you the best of holidays and remember “Be Your Own Superhero”

Team AspienGirl

http://www.aspiengirl.com

http://www.taniamarshall.com

The AspienGirl Book Series Sale 30% off and Team AspienGirl Updates

Holiday Season Update

The I Am Aspiengirl book & pre-order books are 30% off at http://www.aspiengirl.com NOW, for a limited time only. Code: christmas

The brand new Planet Aspien App iTunes and Android is now available with my two recent radio interviews, my blog, my 3 free developmental female Autism/Asperger Syndrome screeners, the Be Your Own Superhero Project, social media, meditations and more! Only $1.29

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I Am AspienWoman is coming along nicely and should be released sometime in the New Year. There will be between 20 and 30 adult mentors led, with permission, by the most amazing mentor herself, Dr Temple Grandin.

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I am also proud to announce that I have been asked to host a radio show with an emphasis on female autism and female Asperger Syndrome. This radio will be beginning in 2015 and will involve discussing the latest research, the latest resources, frequently asked questions, interviews with famous and not so famous people, and much more!

Please check out the Be Your Own Superhero project on my website at http://www.aspiengirl.com, where you can see real-life Aspiengirls and Aspienwomen from a number of countries showcasing their gifts, talents and strengths. If you would like to be involved please send a picture of yourself, your country, your age, your first name, your list of gifts and talents to tania@aspiengirl.com

Aspiengirl Abigail

2015 has some very exciting projects coming. Behind The Mask is a book for professionals to assist with understanding females with Autism. Behind the Mask: The Narratives of Females on the Autism Spectrum is a book about the lives, the masking behaviors, the feelings and experiences of females with a focus on assisting professionals who work with this unique and often misunderstood group of females.

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Last, but not least, there are next to no therapeutic learning tools for girls on the Spectrum. In 2015, we are introducing the AspienGirl Superhero character and her pet Dragon Shibui, who are the lead characters in a workbook series just for girls on the Spectrum. This is a sneak peek sample draft work, still in progress. 

We are at the beginning of a worldwide resource list of professionals trained and experienced to work with females on the Autism Spectrum. I would like to be recommended people who are able to assess and diagnose please. There is a worldwide shortage of professionals that works with females. Please email tania@aspiengirl.com

http://taniamarshall.com/female-asc-professionals.html

Tania is also hosting an Autism Radio Show starting in 2015, focusing on female Autism and female Aspergers. If you have any FAQ, topics, people you would like to be interviewed, please email tania@aspiengirl.com

If you are interested in assessment, consultations, speaking engagements, interviews, book reviews, providing a translation, please contact Tania at tania@aspiengirl.com

Have a happy and safe holiday season,
Team Aspiengirl