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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The majority of assessment tools are based on males

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

Some clues look for in an assessment

The Social World

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

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

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

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

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

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

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

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

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

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

The Play World

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

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

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

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

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

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

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

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

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

Abilities, Gifts and Talents

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

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

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

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

Some presentations

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

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

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

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

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

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

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

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

ASSQ-GIRL item No Somewhat Yes

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

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

Aspienwomanjune2015cover

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

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

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

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

Copyright Tania A. Marshall 2015

Adult Autism/Asperger Syndrome Assessment in Females

Adult Autism Assessment in Females 
Updated 23/01/2021

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. and 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 to 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 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.
It is also imperative that clinicians use a wide variety of listening and communication techniques to ensure they are on the same page as the client. Therefore, as an extension of excellent communication and listening skills, you need to develop the ability to reflect words, meaning and feelings and to clarify that you have understood them correctly.

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)
Neurodivergent affirming approach
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 aspiengirl@gmail.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
Spending time in jail or a mental health facility
Being involved with criminal proceedings
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 aspiengirl@gmail.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 2019, 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 an 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).

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 aspiengirl@gmail.com 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, writing her book series and developing Masterclasses to assist practitioners in assessment, diagnosis and intervention.
Tania’s other books include:
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all 31
AspienWoman April Elit Award1
back cover
Aspienpowerscover
behindmaskfrontcover

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

Aspienwomanjune2015cover

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

insidepage

table of contents

crowd Growing Up Quietthe world

tomboys

tiger1

FashionDiva costume steampunkengineer

strengths3
Preorder at http://www.aspiengirl.com

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

Coming 2016

behindmaskfrontcover

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

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


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

Cover by Ardent Studios and Model Samantha Tomlin

Behind the Mask 3D

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Female Autism Infographics

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

The following article is copyrighted and may not be posted anywhere without permission from the author.

1  Canva2Canva1Canva4Canva5Canva6Canva7Canva8Canva9EFFECT OFPEOPLE AROUNDASpienGIRLS

For more information go to:

http://www.aspiengirl.com

http://www.taniamarshall.com

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

A Peek of “I am AspienGirl: The unique characteristics of young females on the Autism Spectrum”

AspienGirl Mentor: Professional Artist Iris Grace

AspienGirl : \as-pee-an-g-erl\

  1. a female with Asperger Syndrome
  2. a female with a different brain wiring
  3. a female with aspienpowers (strengths and talents)

The word of term Aspiengirl means many things. It represents talent, determination, superpowers, and is strength-based. It represents superhero females of all ages, who are on the Spectrum.

Iris Grace is a 4 year old Aspiengirl who is gifted with the ability to paint. Iris Grace has Autism and cannot speak yet.

Sneak-A-Peek of my first book, I am AspienGirl: The unique characteristics of young females on the Autism Spectrum. Iris Grace is showcased and included, along with some other very talented females.

book_image

The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspiengirls/Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Interview to follow.

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                                       Iris Grace painting in her garden studio

Story of the Secret Seahorse small version

The Story of the Secret Seahorse

Aquillo small version

Aquilo

Koi small version

Koi

To view a video of Iris Grace at work in her garden studio, please visit:

Iris – A Portrait of an Artist, A film by Rupert Ward-lewis
Voice by Olivia Colman

http://vimeo.com/70424410

To view and/or purchase Iris Grace’s paintings, please visit

http://irisgracepainting.com/

Iris Grace Paintings homepage

Tania Marshall. 2013.  All rights reserved. Duplication in whole or part is forbidden. Thank you.

Sneak-A-Peek of I am AspienGirl: The unique characteristics of young females on the Autism Spectrum

Sneak-A-Peek of my first book, I am AspienGirl: The unique characteristics of young females on the Autism Spectrum. Check it out:-)

book_image

 

“Although people told me I was “different” from birth, I didn’t fully understand what they meant. The word I would use is ‘unique'” ~ Teenage Aspiengirl

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“She is often described by others as an ‘old soul’ and often others tell me she has been here before. People have referred to her as different, odd, quirky, unique … even from another planet.” ~ Mother of 8 year old Aspiengirl

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Available for purchase at http://www.aspiengirl.com and on Amazon.com NOW

I am AspienWoman: The unique characteristics of adult females on the Autism Spectrum, coming  January, 2014
Tania Marshall. 2013.  All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.

Aspienwomen Mentor Project: Professional Performer Chou Chou Scantlin

The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Professional performer Chou Chou (pronounced Shoo Shoo) is a professional performer and producer from the United States and an Aspienwoman mentor, who advocates for females on the Spectrum.

 photo danny fowler                                                                                                               Credit: Danny Fowler

Tania: Welcome to the Aspienwoman Project and thank-you for agreeing to be interviewed for the “Aspienwoman Mentor Interview Series”.

Chou Chou: Thank you for inviting me! It is a pleasure to be part of this conversation.

Tania: I came across you in my research on females on the Spectrum. You are a professional singer, performer and you have Autism. How long have you known you were Autistic?

Chou Chou: Officially, about ten years, but, in truth, always, but without that specific label. I was born in the fifties, when little was known about autism and cold, bad mothering was considered the cause. My mother was the business administrator and close friend of a young doctor who ran an exclusive rehabilitative rest home outside New York City. He was very cutting edge, and up on the latest research, and took a special interest in my atypical development and behavior. He made the diagnosis. I adored him and the special attention he gave me. I was sure I would grow up and marry him. At the time, it was common for autistic children to be institutionalized, in part to protect the child from the “bad” parent. This “Refrigerator Mother Theory” of bad mothering causing autism has been long proven as wrong, but, because of this belief, it was considered a priority by the doctor and my mother to keep this label hidden. This was done in an incredibly successful manner, both for my protection, and for my mother’s reputation. My mother, unfortunately, believed she caused me to be autistic, and took this belief to her grave, living with much shame.

I was called “slow”, “simple”, and sometimes, but never by my mother, “retarded”. My brilliant mother took a different, very supportive approach. She called me a “late bloomer”, and told me I could do anything. She openly considered me uniquely wonderful just as I was, and constantly said that one day I would surprise everyone with the woman I would become. She was a wonderful, successful person. I saw no reason not to believe her!

Tania: Unfortunately and sadly, in my clinical work, I still see and hear mothers being accused of the “Refrigerator Mother Theory”. Your mother was a fantastic woman. Tell me how you became a professional performer? How long have you been performing for?

© Brian Coltrane All rights reserved                                                                                                              Credit: Brian Coltrane

Chou Chou: I am a fourth generation performer, and both my mother and father were in show business in their early adult years, leaving for more stable careers. I was speech delayed, but had an incredible memory. Once I started talking, I could parrot what I heard, and memorize long scripts taught to me. It was difficult to speak without a script, and the usual child’s play and conversation was nearly impossible. I was very withdrawn, but, if I was dressed up and given a script, I would light up! This was my vehicle for communication and connection, and I adored that. I put on small plays, said grace at our holiday dinners, and, recited poetry, and even went door to door in our neighbourhood, with my little ukulele, asking neighbours if they wanted me to sing them a song. I performed in school plays, getting lead roles, winning awards of various kinds, and was offered scholarships, but never wanted to be a professional performer. I wanted a more private life, with a home and family. There was always a struggle, because performing was the one way I could connect well, but it took so much out of me. I stopped performing many times, always saying I would never perform again, but something would happen, and there it would be, as my best choice for income and survival. Now, I have found the perfect balance, for me, of a private life and performing for a living, both, with my adored husband, Doc Scantlin. We have performed together for the last twenty years. I am the producer, vocalist, costumer, and co-creator of our show, and Doc is the band leader, vocalist, and music director, and inspiration. Over the years, we have performed internationally at some of the most prestigious balls and gala and have a loyal fan base in our home base of Washington, DC. We do not record or tour, and are not part of the standard popular music industry. We are not big stars, nor have we ever desired for what that would entail. We are blessed with a wonderful reputation, and keep a roof over our heads. You have probably never heard of us, although it always surprises me who has. We lead a modest little retro life, in a 1920’s cottage on the Chesapeake Bay, with the quiet, peace, and loving support that makes me thrive, and able to survive the excitement and fun of the shows. I am who I wanted to turn out to be, am very, very, happy, and never, ever, take it for granted!

                              Chou Chou and husband Doc Scantlin       

Doc and Chou Chou                                                                                                              Credit: Brian Coltrane

Chou Chou: I married at a young age, and had my beautiful son, but my first husband was in a car accident, had severe brain damage for five years, and then died. I raise my son backstage a lot, and found it easy to get steady work as a free-lance talent. I have a unique, high pitched, hyper-feminine voice that people find appealing. I sometimes think I use the singing part of my brain to speak, instead of the language part, because it is the stronger of the two. I am not a particularly great singer, but I sing to an audience as if it were a gift, and so it goes over well. Everyone likes a gift, and wants to be loved!  I can do that when I perform, and that alone, I feel, makes me a worthwhile professional entertainer to this day. I am a rather normal looking person, but I enjoy dressing up and creating a kind of vintage movie star illusion of beauty, which is a great skill to have in my line of work. I am rather fearless and comfortable with this, and can get rather blissfully over-the-top.  It is the more status quo, appropriate, day to day dressing where I hopelessly fail. No matter how hard I may try to “blend in”, I never have, and accept that I never will. At some point, I gave up the effort, and said, “Oh well, ‘To thine own self be true'”, and never looked back. I wear what makes me feel like me, with usually comically dramatic results for a particular occasion. I find it makes for much less stress, and makes me less awkward. Since it is genuinely me, and not just wanting to make a spectacle of myself, people accept it, but I often get more attention than I am wanting when not onstage. Oh well. Small price to pay for peace of mind. As was said of Holly Golightly in “Breakfast at Tiffany’s”, “She’s a fake, but she’s a real one!”.

© Brian Coltrane All rights reserved                                                                                                               Credit: Brian Coltrane

Tania: Was there a mentor and/or role model that helped you be the person you are today?

Chou Chou: I am unendingly grateful to so many people in my life who that advised and inspired me, but, without a doubt, it was my mother who gave me the ability to believe in myself and know that I may do things differently, but that I was very, very able, in my own way. My wonderful husband and son, too, inspire me endlessly.

© Brian Coltrane All rights reserved                                                                                                              Credit: Brian Coltrane

Tania: How does Autism affect you today versus when you were younger, say in your teens?

Chou Chou: Like most people, I have gained much wisdom and understanding over the year, both of myself and life. This is the reward of long living. I had many health issues and uncomfortable traits, that I was determined to understand, so I could accept, control, or eliminate them. I will often focus on an issue, and research it in depth, in order to find a workable solution. Sometimes there is no known solution, so I come up with my own. One by one, over many, many, years, and many failures, I have found a lifestyle and self-management that works for me. I am still an autistic woman, but I am a healthy, happy, and rather successful autistic woman, in my choice of life.

Tania: What kinds of “factors” would you say helped you become “successful”, as a female with Autism?

Chou Chou: I am often told that I work very hard at being “lucky”, and that may be true. I think everyone, autistic or not, needs to look at what their strengths are, no matter what their challenges, and accept that life can be very hard and uncomfortable, but that each of us has something to give, and can learn to give it, and in that, lies happiness. The factors that have made me find a happy life of my own making are:

  1. Being a visual thinker. If I can see it in my mind, I can create it in real life.
  2. Stubborn focus. I easily become immersed in a project, down to the smallest details.
  3. Finding everyone charming. This is a biggie. I am awful at reading expressions, or understanding social signals, and it was a cause of much stress. At some point, I decided that, since I was so awful at this, I would just assume everyone was charming and wonderful, and treat them accordingly. This was very hard to do, especially since I was so scared of people, but now I do it automatically. I learned that most people want to be considered charming and wonderful, and will try to prove me right! Granted, I do not advise unguarded, unsafe behavior, but, if someone is acting rude, I can remain unflustered, and offer them help, or, at least my internalized sympathy, while protecting myself. I have many friends now, and build good professional relationships. I do not socialize in the typical ways, and no longer feel I must do so. I don’t go around expecting everyone to understand, but, if the situation calls for an explanation, or a person deserves more information, I will explain and self-advocate. Then, people will prove, once again, they are, indeed, charming.

Photo1 Ben Powell                                                                                                           Credit: Ben Powell

  1. My ability to see patterns. It can appear that I have premonitions, but what is really happening is that I can see patterns develop, and so can predict outcomes, based on those patterns. That said, life is full of illogical twists and turns, and it has taken me much work to learn to stay strong and keep going when the pattern gets broken. I crave order, but chaos test my strength!
  2. Accepting myself as different, but not more or less, than everyone else. This is makes for good relationship building. That, and the ability to laugh at myself, and never at others.
  3. Having a clear understanding of what is truly harmful to me, and what to do to take care of myself. I am in the extreme hyper sensory range, even for an autistic person, and must make sure I am not put in a situation that is more than I am able to handle. I do not view this as any different from a person knowing their limits in other areas. We all have unique challenges, and there is no such thing as normal.
  4. NOT seeing myself as a damaged or sick person, or using autism as an excuse for getting out of things I find uncomfortable. I have things I can do very well, and some not so well…just like everyone else. I try to be brutally honest with myself about what I just don’t want to do, but should, and what can genuinely push me past my capacity, and cause harm. If someone wants me to do something that will put me in a harmful situation, I will refuse. They might as well try to get me to drink poison. I will not do it. If someone wants me to push myself a little further to achieve a goal, however, I hope I will always find the ’it’ in myself to try, and know the difference!

Tania: That’s fantastic Chou Chou. We are on the cusp of a knowledge explosion via way of research that focuses on females and includes females. What kind of advice would you offer other females on the Spectrum?

Photo Ben Powell                                                                                      Credit: Ben Powell

Chou Chou: Believe that your way of experiencing the world is as valid as anyone else’s. Life can be very hard when you experience it in a way most don’t understand, and you must find the courage to be yourself, and give the world the best of who you are. We each have an obligation and capacity to make the world a bit better daily, no matter how severely disabling we may find our state of being. Make this your goal, and you will always be happy. You do not need to sound, look, act, or live like anyone else, but, if you are true to yourself and give what is uniquely yours to give, and assume everyone else just wants to do the same, you will find a place where you are accepted and will thrive. You don’t have to be socially savvy, you don’t have to be good at conversation, and you don’t have to be pretty. You just have to see people as charming, and give them the gift of you, and that is the best gift of all!

 

Chou Chou Bunny

 

 

Tania: Where can people find out more about you or see you?

Chou Chou: Here: http://www.huffingtonpost.com/ariane-zurcher/autism-adults_b_1912430.html

www.docscantlin.com

Twitter: @docscantlin

Facebook: Chou Chou Scantlin

Also, we are honored that acclaimed photojournalist, Lucian Perkins, is soon to be completing a documentary about us, our band and our happy little autistic enhanced retro life. Lucian has made a trailer for the documentary. He is close to completing about Doc and me, our band, our little retro life, and how it all works so well with autistic me:)

I keep saying I will start a blog. I think I will, but, oh, life is so busy, and there are songs to be sung!

I also take breaks from social media. A girl’s gotta do what a girl’s gotta do! I hope the day will come when I can contribute more, and positively, to the understanding of being an autistic woman, and perhaps make it a bit easier for younger ones, finding their way.

Photo Anthony Neenan                                                                                                          Credit: Anthony Neenan

 Tania: What a fantastic photo by Anthony Neenan.

 Chou Chou : I love the photo (above). The spotlight blocks the extreme sensory challenge of a room, and puts me in a place where I can connect and love the charming, charming people, in a way I cannot do otherwise. It is the one thing I do well that involves people. All my other best skills are best done in solitude:)

Photo1 Mark A. Simonson                                                                                                       Credit: Mark. A. Simonson

Tania: Thank you Chou Chou. It has been an absolute honour interviewing you and thank-you for your time, words and being a part of the Aspienwoman Project.

Chou Chou: Thank you, Tania! Best of luck with all you do, and may YOUR dreams come true! As I say onstage, when I introduce myself, “Now, we are friends!”.

Chou Chou

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

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.

 

UtaFrith

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.

Flying under the radar: Girls and Women with Aspergers Syndrome

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Flying under the radar: Girls and Women with Aspergers Syndrome

In Australia, approximately 1 in 100 children are born with an Autism Spectrum Condition (ASC). ASC is a recently defined lifelong developmental condition and affects people regardless, of age, colour, race or socio-economic status. It is now referred to as a spectrum condition, meaning that the condition affects the person in different ways, even though there are common areas of challenges across all people with Autism.
Aspergers Syndrome (AS) or High Functioning Autism (HFA) is a form of Autism, characterised by challenges in social communication and interaction and restricted, repetitive patterns of behaviour, interests, or activities, including sensory issues (DSM5, 2013).

Hans Aspergers, an Austrian paediatrician, originally described Aspergers Syndrome in 1944. He originally believed that girls were not affected. However, further clinical evidence led him to revise his statement. In terms of statistics, Kanner (1943) studied a small group of children with autism and found that there were four times as many boys as girls. Ehlers and Gillburg (1993) found the similar ratio of four boys to every girl, in their study of children in mainstream schools in Sweden.

Aspergers Syndrome appears to be more common among boys than girls, when the research is reviewed. However, recent awareness of genetic differences between males and females, and the diagnostic criteria largely based on the characteristics of males, are currently thought to be responsible for females being less likely to be identified. Attwood (2000), Ehlers and Gillberg (1993) and Wing (1981) all acknowledge that many girls and women with Aspergers Syndrome are never referred for assessment and diagnosis for AS, or are misdiagnosed, and are therefore missed from statistics and research. Many girls and women do not meet diagnostic criteria, as the criteria are based on the behavioural phenotype of boys. There exists a critical need for diagnostic criteria to reflect the female phenotype.

Questions have been raised about the ratio of males to females diagnosed as having an autism spectrum condition (ASC), with a variety of studies and anecdotal evidence citing a range from 2:1 to 16:1. Here in Australia, I have seen a rapid increase in the number of girls and adult women referred for a diagnosis and/or support.
The following are some of the identified different ways in which girls and women tend to present from boys (Gould and Ashton Smith, 2011; Attwood, 2007; and Yaull-Smith, Dale (2008):

• Girls use social imitation and mimicking by observing other children and copying them, leading to masking the symptoms of Asperger syndrome (Attwood, 2007). Girls learn to be actresses in social situations. This camouflaging of social confusion can delay a diagnosis by up to 30 years.
• Dale Yaull-Smith (2008) discusses the ‘social exhaustion’ that many females experience, from the enormous energy it takes pretending to fit in.

• Girls, in general, appear to have a more even and subtler profile of social skills. They often adopt a social role based on intellect instead of social intuition.

• Girls often feel a need and are aware of the cultural expectations of interacting socially. They tend to be often more involved in social play, and can be observed being led by their peers rather than initiating social contact. They often only have one or two close friends and/or may find boys easier to get along with.

• Cultural expectations for girls involve participating in social communication, often made up of social chit-chat or surface-type conversation. Girls with Asperger Syndrome find this type of communication exhausting, tending to desire having conversations that have a function to them. Girls on the spectrum are also are socially confused by teasing, bullying, and bitchiness, and the teasing that often occurs at school.

• Girls often misunderstand social hierarchies and how to communicate with others based on the level of the hierarchy that the person is on. This can tend to get girls in trouble with adults.

• Girls have better imagination and more pretend play (Knickmeyer et al, 2008), with many involved in fiction, and the worlds of fairies, witches and other forms of fantasy, including imaginary friends
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• Whilst the interests of girls on the spectrum are very often similar to those of other girls, it is the ‘intensity’ and ‘quality’ of the interest which can be unusual. For example, many are very focused on their animals, celebrities or soap operas.

• Girls and women on the spectrum are generally skilled in one on one social relationships, but are uncomfortable and anxious in large groups of people.

• Girls may have great difficulty in attempting to explain their difficulties in social situations and/or groups. Instead, they may skip school, complain of headaches or stomach aches or refuse to go to school.

• Girls facial expressions tend to not match their moods. They may say that are fine, but on the inside they are unhappy, anxious or both.

• Girls tend to be more passive-aggressive (avoid social activities, refuse requests from others or refuse to complete tasks,), tend to blame themselves and/or internalise their feelings and anger and have less ADHD.

Girls on the autism spectrum are more likely to come to the attention of health professionals due to difficulties with anxiety, depression, eating disorders, behavioural problems and/or social skills challenges. The presenting problem then becomes the ‘diagnosis’, with the larger picture and explanation for feeling “different” is missed.

Women with Autism are most likely to have had a long history of misdiagnoses, often with borderline personality disorder, schizophrenia, anxiety disorder, depression, selective mutism, OCD, but somehow those labels just didn’t seem to fit adequately. Up to 42% have been misdiagnosed (Gould, 2011).

Many women with an autism spectrum condition are not being diagnosed and are therefore not receiving the help and support needed throughout their lives. Having a diagnosis is the starting point in providing appropriate support for girls and women in the spectrum. A timely diagnosis can avoid many of the difficulties women and girls with an autism spectrum disorder experience throughout their lives. Who should I take my child or myself to see? Ask your doctor, psychologist or paediatrician how many girls with Autism they have seen. They must have seen as least 50 girls with AS, due to the ‘social echolalia’ or the camouflaging of social confusion that females on the Spectrum engage in.

Three Common Female Autism Myths and Advice

1. Girls and women cannot socialise. Actually, many girls and can socialise quite well, just not for as long. They tend to suffer from social exhaustion or a ‘social hangover’ from longer periods of socialising. All persons on the spectrum need solitude to recharge their batteries.
Advice: Let your family or friends know that you need a solitude break, to allow you to recharge your batteries. Let them know that this is how your regain your energy.

2. Girls and women lack empathy. Actually, there are different types of empathy. Girls and women have high emotional empathy, being highly sensitive to the emotions of others, also known as referred emotion, the actual feeling of others feelings. This can be quite overwhelming for the person experiencing it. Being overwhelmed by feeling others emotions makes it challenging for them to process or ‘read ‘the subtle social signals (tone of voice, subtle expression on face)
Advice: Learn to accept and trust your intuition. Learning a variety of interventions to help manage or cope with high empathy is important.

3. Girls and women with autism cannot lie. Girls and women with autism can lie, but they usually do it badly. They tend to lie to the detriment of all concerned or lie as a quick fix because they do not know what to do, so they will deny, even when it’s plainly obvious that they are. In addition, females tend to tell the truth when it is not socially acceptable to do so or be truthful with their emotions, when it may not be the best time or place to show those emotions.
Advice: Social stories for “white lies” and the appropriateness of “emotional truth” are useful intervention tools.

About Tania Marshall

Tania holds a Masters of Science in Applied Psychology and a Bachelor of Arts in Psychology. She regularly provides diagnostic assessments, support and intervention.

Tania is currently working on her fourth book. She is co-authoring a book for professionals tentatively entitled “Assessment of Autism Spectrum and Asperger’s in Females: Comprehensive diagnostics and treatment planning for girls and women with autism spectrum conditions across the lifespan”.

To enquire or book assessments, problem solving sessions and/or support, please e-mail Tania at tania@aspiengirl.com

Tania is also completing the first three in a series of books on female Autism. Her book series is available for purchase at http://www.aspiengirl.com

To enquire about interviews, articles, workshops, or translations/translating of her books, please email Tania at tania@aspiengirl.com

book series2Tania Marshall©, 2013-2014. All rights reserved. Aspiengirl and Planet Aspien are trademarked. Thank you.