Female Asperger Syndrome, Current Statistics and Gender Differences

I write based on my own clinical and anecdotal evidence,
research studies and the work of world experts.

The statistics for boys to girls with Asperger Syndrome sit at 1:4, so
for every 1 girl there are 4 boys who meet criteria for Asperger
Syndrome. However, for those of us professionals who work solely in
this field we know that the statistics reflect a prevalence rate of
Asperger Syndrome in girls that is in reality, 1:2, meaning for every one female, there are two boys. Dr. Judith Gould, director of the National Autistic Society’s Lorna Wing Centre for autism and co-founder of the Centre for Social and Communication Disorders discussess the difference in prevalence rates between boys and girls. The statistic most commonly reported is that ASDs are four times more common in males than in females. Many clinicians, however, believe that the ratio is as high as 16 boys to every girl. But Gould believes that significantly more girls have the condition than is recognised; she estimates the ratio to be 2.5 boys to every girl.

Girls with Asperger Syndrome present very differently to boys with the same condition and “fly under the radar of a diagnosis”, often being MISdiagnosed,
MISunderstood, MISmedicated and sometimes, institutionalized. In my
clinic, boys tend to be diagnosed before formal schooling or in
their primary school years. Whilst I have diagnosed girls with
Aspergers as young as two year of age, the majority are closer to
the teen years. They appear to be able to cope with the basic more
“play-based” socialization. However, in secondary school the social
world changes dramatically from play-based to a more socially and
emotionally based conversation, social hierarchies are more
apparent, and the typical “bitchiness” and “mean girl” behaviors of
teenage girls is distinct. This difference often flies over the
heads of the female with Aspergers, who are often left behind
repeatedly analyzing their social faux pas, social confusion and
replaying the day’s social events in their minds over and over
again, often late at night, in their attempts to make sense of
them. Their female peer group’s interests have changed from
childhood friendships to teenage talk, emotional conversations,
cliques, groups, backstabbing, and “bitchiness”. They find they
cannot understand or “read” the unwritten rules, the non-verbal
facial expressions/glances/eyerolls and the non-verbal body
language that is critical to being an important member of a group.
As much as they observe, copy, and mimic their peers, they finds
that they just cannot keep up or fit in appropriately. Their peers
sense that there is something “ödd” about the Aspien, despite the
enormous amount of energy that they generally expend in their
attempts to fit in. In secondary school, girls with Aspergers
utilize a variety of coping mechanisms in their attempts to “fit
in”, “pretend to be normal”, “be accepted”, hide and camouflage
their confusion, imitate, copy, fake it until they make it, but
still appear to come off just a little “ödd” or “strange”, despite
their best efforts. Most of the girls I have seen have had previous
diagnoses of anxiety disorder, depression, ADHD, an eating
disorder, oppositional defiance disorder, bi-polar disorder and
even Borderline Personality Disorder (although they are still young
teenagers) and at times, reactive attachment disorder or selective
mutism. An enormous amount of energy is spent on observing,
learning and trying to understand and then copying their peers
social behaviors. I have met females who have utilized some or all
of the following strategies: Reading body language books and
practicing in front of the mirror in a repetitive way until the
skill is perfected the mirror

Learning from television shows or books about others inner thoughts, feelings and
motives

Replaying specific daily social situations in their own play at home in an effort to learn and
understand

Using imaginary friends to specific daily social situations in their own play at home in an effort to learn and understand

Over-apologizing, appeasing or pleasing others, giving gifts for social faux pas or social
mistakes

I have seen many teenage girls who have been brought into to see me and are have been described as having “gone off the rails”, in terms of their appearance, their attitude,
their mood, skipping or dropping out of school, running away from
home, involvement in drugs, sex, crime and/or the Police. They later met formal criteria for Asperger Syndrome.

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Using “chameleon” strategies, where the Aspien girl can adapt and fit into a variety of roles. In one example, I met a female who successfully fit into a very rough
motorcycle gang, a conservative church sect, and a traveling
circus! She had acted so well for so many years that she came in
with clinical depression, having no idea who she was. I have seen
teenage girls with Aspergers reject all social norms/values and
turn to drugs and sex and even crime.

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Girls with Asperger’s need very specific and appropriate social skills
interventions designed for them, in terms of learning about levels
of friendships, boundaries, social hierarchy, the unwritten social
rules, non-verbal body language, cliques and groups and the role of
people in those particular groups. They also need interventions
designed to help them with identity, self-esteem, managing intense
emotions, rigid black and white thinking and negative thinking.
Most typically, Aspien girls have the greatest difficulty in the
adolescent years, when they tend to “go off the rails”. Most, but
not all, Aspiens tend to be non-conformists and conforming to
social rules they don’t understand begins to take it’s toll. I had
one parent show me a picture of her daughter just a few months
before she saw me. He appearance was one of a typical teenager.
Then I had the chance to meet her daughter, who had in just a few
months gone “goth”, gotten several piercings and tattoos, was using
drugs and hanging around “bikers”. This young teen was rebelling
against all those groups that had not accepted her. Her desire was
to be accepted and approved of by anyone. This group and the men
she was having sex with accepted her, approved of her and took care
of her. She felt both accepted and popular. It is imperative that
any girl who comes into a clinic with either/or an eating disorder,
social difficulties, intense emotions, difficulties expressing
themselves, anxiety or depression, must be screened for Asperger
Syndrome, in a female. Then, once a comprehensive and detailed
developmental history is taken by an experienced clinician, the
diagnosis of Asperger’s becomes apparent, and then the appropriate
intervention can take place. Currently, information on female
Aspergers and Autism is occurring at a
rapid pace and there will be a
knowledge explosion within the next 10 years.

A recent study Dr Meng-Chuan Lai of the University of Cambridge
found that Autism affects male and female brains
differently, http://www.bbc.co.uk/news/health-23613816

CAVEAT:
Generally speaking, my doctoral research is in the area of females.
Having said that I am not saying that males do not experience these
issues. I am merely writing about my
specialization.

Tania Marshall©. 2013-14.
Professional Q and A Series I. All rights reserved. Duplication in
whole or part is explicitly forbidden. Thank
you.

Aspienwoman Mentor Interview Series: Actress Olley Edwards

This is my 6th Interview of people involved in the world of Autism or Asperger Syndrome. Previous interviews of mine include: Professor Uta Frith, Maja Toudal, Kathy Hoopman, Lynn Marshall, Rich Everts and The United States of Autism Movie.

This interview is the second in a series where I interview Mentor Aspienwomen from a variety of countries about their lives, Asperger Syndrome, their gifts and talents and more! Actress Olley Edwards is a professional actress from the United Kingdom and an Aspienwoman mentor, who seriously advocates for female Asperger Syndrome through by making a movie and writing a book about the condition.

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Tania: Welcome Olley and great to have you on join a phenomenal group of female mentors, in this interview series and future book!

Olley: Tania, thank-you for inviting me and it is a pleasure and a bit of a mission of mine to advocate for females with Asperger Syndrome.

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Tania: I came across you in my research on female Asperger Syndrome. I had initially heard about you in terms of this incredible movie that you were making, at the time, called “The Kindest Label”. When I read your script I was very impressed. I also want to say that I love the title of the movie because one of the most common comments I come across for not having a female formally diagnosed is the stigma of a ‘label’. Please tell us about your movie?

Olley: ‘The Kindest Label’ is a short 20 minute film about the importance of an early diagnosis of females with Asperger Syndrome and the consequence of a late or missed diagnosis. The movie told from the view point of lead role “Belle”, not only as an adult with a late diagnosis but also by Belle’s younger self experiencing the lack of understanding and support she should have had. Belle is a complex adult with addiction issues living in temporary accommodation. She is trying to rebuild her life now that she has received her late diagnosis at 26. Her younger self who tells her story in flashback scenes is a clever and bright young girl who has very little support in school and in safeguarding issues.‘The Kindest label’ also shows the adult Belle, with scenes of how she now can see how her life could have been happier if she had been diagnosed sooner. It shows just how Belle’s life could have been with Asperger Syndrome, the “The Kindest Label” she ever had.

‘The Kindest Label’ is going to be entered into as many film festivals in UK and Internationally as possible, My aims by doing this are to raise awareness, (open a few eyes and prick up a few ears) and to hope that someone with the expertise, money and contacts likes it enough to make it into a feature film for a global audience. My film is intense, information packed, hard hitting snap shot at late diagnostic consequences but it could easily be expanded upon to make a ground-breaking feature. The movie aims at raising awareness and changing the perception of “what female AS” looks like forever.

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Tania: How can people view ‘The Kindest Label’?

Olley: Due to festival regulations, I am unable to post film online until after festival use, to raise awareness in the meantime I am arranging private screenings and will endeavour to take film into secondary/high schools to use along with my book to talk about female Asperger Syndrome.

Tania: You directed this movie and you are an actress yourself?

Olley: I wrote, co-directed and acted in “The Kindest Label”. Luckily, being an actress, I have great actor, director, cameraman friends who came on board and gave up their free time and talent to make this happen. Playing Belle as an adult was a pleasure as well as hard work , to prepare myself for the “homeless addict” role didn’t wash my hair for 8 days and it also meant filming with no make-up or glamour, this felt very vulnerable as its normally these “costumes” as such that help me feel more confident when acting. I am however more than pleased with the end result as Belle is a very guarded yet unconfident young woman and that shows on tape.

Tania: How did you get involved in acting?

Olley: I started acting at a very young age; it started with dance lessons at 4 which grew into attending South Hill Park, the local arts centres drama classes every Saturday by 8yrs old. I became obsessed or should I say, hyperfocused with entertainment and was interviewing pop groups on Saturday morning TV by 10. I loved entertaining of any kind and took part in local productions and the school plays. My school was just a normal state school, it was huge, scary and I hated it. I went for one reason and one reason only, we had a great theatre and I use to skip PE and any lesson I could go unnoticed in just to pretend it was my drama lesson and go there instead. The teachers soon realised what I was up to but they let me get away with it most of the time. I got the role of the Artful dodger in the main school play, I prepared for this by constantly watching Oliver on VHS and copying the role of dodger over and over again. It was a boy’s role but loved playing a boy and was convincing enough to receive the school drama award for it. The next year I started lessons at a very well-known London Drama school. I only went one day a week but it was always the best day of the week. I felt so at home there and was offered a small role in Disney movie, which I couldn’t take up on, however the head offered me a full scholarship. Sadly I couldn’t attend fulltime as we lived to far away and the lodgings were very expensive. I can remember crying for a whole day in my room. I must have had the whole street thinking what a spoilt brat I was. I know now I wasn’t a spoilt brat, I was having a meltdown and unable to continue with my subject of hyperfocus.

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I’ve always been an extremist 100% in or 100% out. Very black and white thinking. To me this meant I could never act again and I went downhill into an extreme teenage rebellion by the age of 13. I had replaced the friend and buzz of acting with secret drinking, drugs, you name it. This resulted in a teenage pregnancy by 15.

From the moment I knew I was to be a mum my hyperfocus was just that. To be the best mum I could be. I knew it wasn’t going to be easy but I loved being a young mum and I felt truly blessed. I was married by 18 and had my 2 other daughters within that marriage. My obsession was 100% on parenting and housekeeping. I lived in constant anxiety that I wasn’t the perfect mum, developed OCD and insisted on everything being lined up a certain way, certain coloured ornaments in in certain rooms and felt so empty that I started to diet a lot, weighing just 6.5 stone at 22. I was very happy being a mum. I live for the girls, I loved the routine of marriage but I did feel like I was just playing another role and something was missing. I felt I was never good enough but I was a great mum and wife I just had a huge chunk of my identity missing.

olley film

After my divorce, I had these awful voids of time where children were at their dads and step mum’s, I filled this void (which I can only liken to having 3 limbs removed) to go back to my first love, acting. My acting has gone strength to strength and even if I’m sleep deprived I feel acting energises me mentally. As any mum knows you have to put a brave face on a lot, any single mum with several children on spectrum will tell you how that brave face may as well be super glued on some days! Acting is once again, my safe place, whereby I can have escapology, display emotions, spend time with others, and cry on demand if required too….with ease.

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Tania: I have provided formal diagnoses and personally know many actors/actresses with Asperger Syndrome. Your own daughter Honey is also an actress and has Asperger Syndrome. She also starred in your movie. Did Honey naturally follow your footsteps, in terms of acting?

Olley: Honey has many talents. It would have been unfair for me to push her on the stage all “pushy mum”- esque. Honey also loves reading, history and sci fi. Honey is a really intelligent young girl but this intelligence was leading her to be very isolated and she was spending huge chunks of time alone in her room, not hours, not days but up to a week at a time in summer holidays. With the help of a bursary from South Hill Park, the same Arts centre I went to as a child, Honey was given a small role in the Easter show. I will never forget the first day when the teacher asked me if I knew Honey could sing. Actually, no , I didn’t know she could sing, Honey was almost mute at home after being drained from school. The first time I saw Honey acting and singing on stage I couldn’t believe it. It was like looking at a different child. Her Aspergers leaves the building the moment she is on stage or in front of a camera. As a result her confidence is so much more improved and she still receives a place every summer and Easter at South Hill Park. Honey also had the lead in a short film “A Fathers Gift” and the lead in ‘The Kindest Label’, my Aspergers film.

honey star

Tania: How is the diagnostic process in the UK?

Olley: The diagnostic criteria in the UK has well improved since I was younger. The doctors who diagnosed my two daughters were outstanding! Honey was diagnosed very quickly with Aspergers at 6 and Cherish was diagnosed with standard Autism at only 2 years (however I believe her to be more Aspergers). The criteria for teen girls, young women and adult women though I feel, is shocking. Female Aspergers looks so different to male Aspergers and women are still going misdiagnosed. Many of the Asperger traits look a lot like depression, anxiety and bipolar disorder but they are merely co-morbid conditions to undiagnosed Asperger Syndrome.

Tania: Has Honey’s diagnosis and the new research on female Asperger Syndrome caused you to seek a diagnosis for yourself?

Olley: My parents have been and always are very supportive, In the midst of my teenage rebellion they sought help for me after I refused to go to school, spent hours alone in my room and had full blown tantrums (better referred as ‘meltdowns’). The doctor they saw called me lazy and washed his hands of me. After the routine of marriage I felt I was getting more and more anxious again, and with the fact I had two daughters on the Spectrum made me seek my diagnosis at last. The doctor I saw said on paper I was very Asperger’s, scoring sky high on a paper test. The Doctor however insisted that I couldn’t possibly be Aspergers on the basis I spoke about acting a lot (apparently people with Aspergers can’t act) and the fact I maintained eye contact (I stare).

I don’t know what he expected me to look like? Perhaps wearing a anorak and reciting train time tables (I do actually own an anorak and yes I do know the London train route a little bit too well but I also know not to make it common knowledge)?

I found it a puzzle as Honey is a great actress yet she is Aspergers? I wondered if females and males on spectrum presented differently. I went onto Google to research the differences in male and female Aspergers. The criteria felt like someone had watched me from birth and taken notes. I felt a rush of relief and sent it to as many friends as possible. I know in my heart I have Asperger’s, and I will now gain an official diagnosis outside the UK. My aim to do this isn’t to get support or services perse. I am 31 now, I cannot get my schooling or teen years back. It’s not even to let my inner rebel have her day and wave it in the face of the UK doctor who said Aspergers people can’t act. It is because, at last, I have my identity, my missing puzzle piece and above all I am proud of whom I am and that is an Aspienwoman, an adult female with Asperger Syndrome.

Tania: How do you think having Asperger Syndrome helps in terms of being a great actress or actor?

Olley: Females with Aspergers don’t make good actors, they are BORN actors. Neurotypicals spend thousands to learn method acting at university, but female Aspergers method act, without even knowing from day one. They are chameleon, watching people’s actions, mannerisms, accents and language and mimic this to get by, to socialise, to communicate. Acting is an Aspien girls second language, almost like being bilingual.

Tania: Now, not only have you made a movie about female Asperger Syndrome, but you mentioned earlier you have written a book entitled ‘Why Aren’t Normal People Normal? A Girl’s Survival Guide to Growing up With Asperger Syndrome’.

Olley: Yes, I have just finished it this past weekend and it is more of a guidebook for girls, in terms of what will help and support them as they develop.

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Tania: Where can people purchase your book?

Olley: I am just now putting the final touches on my book. Once that is done, people can purchase it. I will let you know the details once we have it all set in place

Tania: It has been a real pleasure to interview you and you are such an inspiration to the many females with Asperger Syndrome. Thank-you for a fabulous interview and for doing what you do for the many females all over the world with Asperger Syndrome.

Olley: Thank-you for interviewing me and providing a platform like this where people can and learn more about female Asperger Syndrome, mentors, information and resources.

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