Adult Autism/Asperger Syndrome Assessment in Females

Adult Autism Assessment in Females 
Updated 23/09/2016

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.

Many girls and women are going undiagnosed or misdiagnosed because the majority of the research has been conducted on males and there is a great need of research based on females compared to NT females, research based assessment tools for females and interventions for females. There is also a great need for these tools to be made readily accessible to professionals, in other countries and other languages. At present, there are few professionals in the world both trained and experienced in assessing and/or working with females on the Spectrum, across the lifespan. At this point in my career, I have worked with hundreds, closer to 1,000 females, from ages 18 months to 78 years of age, of various sub-types, symptomatology, mild to severe traits, a variety of levels of Giftedness, many professional performers (singers, musicians, comedians, actors, models), professionals athletes, professional artists, professional authors, high-profile individuals, all at different points on the Social Spectrum, some with gender dysphoria, some with sexual fluidity, parenting and being a mother, being in trouble with the law, stalking and obsessiveness, working in the sex trade, being sectioned into a mental health facility (and the experiences that go with that), have work-related challenges, and much more.

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, and I have worked with individuals who have both. For adults, no-one knew of Asperger Syndrome or Autism back in their childhood. So a comprehensive early childhood and teenage autobiographical account is an extremely 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. It also involves childhood photographs, report cards and comments, parental and/or partner perspectives, formal assessment tool(s) and an exploration of abilities, talents and/or gifts.

 

The vast majority of women I work with are on the bright end of the Spectrum, and tell me their reasons for seeking a diagnosis range from self-understanding and awareness to improving their relationships, to improving their works relationships, to treating their anxiety and or depressive episodes. are not seeking services, support, nor government support pension or services. They are wanting to know why they have “felt different” for so long, wanting to know what career is best for them, wanting to know how to structure their lives. They don’t want o be on government disability not do they see they value in that. They like working, want to work and contribute.

Presently there are ZERO 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.

When I conduct impressions assessments, the assessment of adults explore the areas of social communication and interaction, repetitive and stereotypical behaviour, sensory issues and abilities or gifts. Feedback is provided, recommendations, highly recommended resources and a “What Next?” discussion is also involved.

Generally speaking, my comprehensive adult diagnostic impressions assessments include 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
A 10-page Life History Questionnaire to go over various traits, and also collect extensive life/educational/employment/psychological history, developmental information.
Where possible, I interview family members, a partner, or any other family member or friend who know the person very well. I also base my diagnosis on my direct experience of how the person presents during the interviews. Non-verbal body language, facial expressions, the sound of the voice and intonations are all assessed.
An interview exploring present day context and day to day functioning
An exploration of the following is important:
 
Family history, including one’s own children (if any), who may be displaying traits or be formally diagnosed.
History of mental health issues, 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, medical, educational reports
Educational history
Social communication and relationship/friendship history, use of social compensatory strategies
Identity or persona (s)
A thorough exploration of compensatory strategies
A sensory processing assessment
Work history
School report cards, school/teacher comments
Childhood photos from each developmental stage
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
An exploration of visual, auditory, taste, touch, smell, balance, movement and intuitive differences, synaethesia and hyper empathy.
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,  Central Auditory Processing, Irlen Syndrome, Ehlers Danlos Syndrome,  Hypermobility type Syndrome, food allergies)
Formal diagnostic tool(s) depend on the context of client. Research has shown that both the DSM5 and the ADOS are not very good at picking up the subtle characteristics of females on the Spectrum.
It is imperative that professionals learn to ASK females the right questions. These questions will vary from questions that would be asked of males. This is because we research is finally beginning to catch up with clinical experience, telling is what we as clinicians have know for years, that males and females present differently, in quite a few ways. Giftedness also impacts on the presentation of a female on the Spectrum, so professionals need to be aware of all levels of Giftedness and how they affect the assessment process.
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.

While my diagnosis is based on the current DSM-5 Criteria, it is by no means a cut and dry process. The DSM is a working document and as such, does not accomodate well to females on the Spectrum.

Diagnosis, ultimately from my perspective, is best done when in collaboration with the client (and their partner or spouse when relevant) as a way to inform, educate, reflect and empower.

An important  “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 (including the best 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, aka self-diagnosis
A family member has recently or in the past received a diagnosis
Stalking and/or becoming involved in other criminal activities
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 and best selling author, a 2016 and 2015  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 was 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 proud to announce that her 2nd book “I Am AspienWoman” recently won an IPPY eLIT Gold Medal in the “Women’s Issues” category.

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 Admin@centreforautism.com.au for clinic or Skype remote impressions assessments, consultations, problem solving sessions, skills acquisition and intervention, 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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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

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.

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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.

Olleybook

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.