The Neurodiversity of Autism and Asperger Syndrome in Females

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In working with females (and males) on the Spectrum for approximately 20 years, I have learned a lot from my clients. When I first started out as a psychologist, I was seeing female on the Spectrum; they just were not called or labeled that back then. In working with hundreds of females, it is safe to say that there is much neurodiversity within this group. This is extremely important to talk about because these are their narratives.

By this, I mean that there exist varying presentations of girls and women on the Spectrum. Some are easier to diagnose than others. This is due to temperament, personality type, the severity or mildness of the person’s specific Autistic traits, how many traits they have, gender differences, how much the traits impact on their ability to function, other conditions or disorders and much more.

Due to a variety of lagging skills and/or differences, many females with Autism do not get along with each other, yet many do, just like neurotypical people. Many females with mild symptoms are unable to get a diagnosis, even though their traits and exhaustion impact them on a cyclical basis. Those with the subtle traits usually never receive a diagnosis.

Now that I have worked with thousands of women, they have taught and shown me through their narratives, just how different they are from each other. It is important to discuss this issue so that no more females are left behind.

Stereotypes exist due to the history of Autism and describing boys rather than girls certainly comes into play. Other stereotypes include cultural perceptions and the social focus of culturally “female” interests. So, assessments based on males and cultural perceptions and biases are certainly factors. In my work, I have seen the stereotype of the “Tomboy” play a part in other females with a different presentation not receive a referral for an assessment or a diagnosis.

The use of a social mask, compensatory mechanisms, level of intelligence (for example, being 2e), being able to get by in life day to day and then have cyclical breakdowns, and the subtle differences all contribute to a delay in diagnosis or a misdiagnosis. These differences mixed in with genetics, temperament, personality, co-existing conditions, family environment and upbringing all impact and affect how Autism presents in a female (and male).

Subtypes or presentations are extremely important to understand if one is to be trained appropriately. It is imperative to understand how many different ways a female on the Spectrum can present to a clinician. A diagnosis is critical, not only for self-understanding; but for support, services, and academic accommodations. I am talking about how girls and women have presented themselves in my clinic over 20 years, from a variety of countries and cultures. This blog is but a small part of my book entitled, “Behind The Mask” due 2017.

There are a few ways that females on the Spectrum adopt a role. In particular, if they really want to fit in and conform with society. There exist some common types or sub-types of women on the Autism Spectrum. The reason this is important is so that, as I said before, no females are left behind, and that professionals are trained in the various presentations so that they do not miss a female and also to educate the wider population about the neurodiversity of neurodiversity itself! So, let’s discuss just a few presentations:

The Tomboy is usually indifferent to gender, preferring to have boys for friends and dress in an androgynous way or dress in boys clothes. She finds it much easier to talk to boys (or men). However, some individuals have gender dysphoria and this is not to be taken lightly.

The Academic superstar uses her intelligence to achieve degrees, awards, honors and more. She has an intelligence above 130, qualifying for MENSA, and has used her intelligence to get through social situations. The higher the giftedness, the more different the presentation may appear.

The Passive female is a people pleaser. She is shy, quiet, cooperative, rarely asks for help and compliant, too compliant, and blends into the wall (in the classroom or at school). She rarely stands up to bullies and is often taken advantage of.

The Aggressive female has often had a history of misunderstanding and misinterpretations, both ways; on her part and on others parts. She often misinterprets others, burns bridges, is impulsive and is the type most often associated with or been diagnosed with Borderline Personality Disorder or BPD traits.

The Scientific female may have a special interest in physics and/or Quantum Physics, mathematics, chemistry, animal sciences, biology or space, programming, just to name a few. Often, this type of woman is quite focused on their topic of interest and reaching high levels of distinction (a Masters or PhD).

The Style Icon is aware, even overly aware of style and fashion. She may work in fashion design, be an actor or a supermodel. She has got the outfits, makeup, hairstyles and appearance perfect. Her appearance tends to intimidate males and females, who are threatened by her appearance, presence or knowledge of the fashion and stylist world. She grasps small talk, making her appear to be neurotypical and allowing her to cope in social situations and fit in with her peers. Even if her appearance is eccentric, she gets away with it due to her other talents; whether they be a singer, a costume designer, an actor or DJ.

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The Housewife or Cook loves to entertain and is very good at it. She is whom people want to hire for their home. She loves to have people over, but remains the ultimate host, so as not to have to socialise with others. 

The Artist gets away with being different or eccentric because society expects them to be that way, so in this way, they often remain undiagnosed until they fall off the rails. they may be the more eccentric painters, writers, actors, supermodels, singers, and band members.

The Justice Warrior is obsessed with justice, fairness, and right and wrong. These are admirable traits, but not when it turns into obsession, misguidedness or inappropriate recruiting of members. Some women (and men) are ‘one woman’ groups because others do not want to join their cause due to the social way they attempt to get others to join their cause. These people end up starting their cause over and over again. It is true (although some may not like to admit it) that some women (or men or neurotypicals) have a “misguided sense of social justice”, going too far or the wrong way of going about their crusade. There is a socially appropriate way to get people to join your cause. I have met clients (both neurodiverse and neurotypical) who have gotten into trouble with the law or are in jail because of their enlarged justice gland, lack of social context and impulsivity.

In summary, this is just a brief look at how girls and women experience Autism and the variety that exists in presentation. There are other presentations that will be discussed in my book. Girls and women vary differently from each other and also differ in their ability of lack of ability to use compensatory mechanism and/or coping mechanisms. They also vary in intelligence levels. Those who are both Autistic and Gifted have a different presentation. However; they all share the same core challenges (from mild to severe) and some remarkable strengths or gifts.

This blog is written to address the neurodiversity with a large group of females and has nothing to do with sexism or ableism, nor that neurotypicals cannot have the same careers. Most importantly, it is imperative that we understand the differences in neurodiverse females, the different ways they cope or not cope, and the different ways they present.

Within the Neurodiverse population, there is no particular way to be a girl or a woman. Many of my clients have all kinds of preferences and interests, including my Lego pens sets. Many of my clients have a wide and varied style of clothing, from fashion to boys clothes to Victorian clothing to gender-neutral clothing to completely loving being in a princess Tulle dress or an Elf costume. Some of my clients wear “boy” clothing and “girl clothing”. Some like cargo pants, some like dresses and/or corsets, some like dressing up in their favorite character, some love femininity and some do not and many like books, stationery, dolls, and theater.

Finally, the purpose of writing about presentations is to leave no female out; to never exclude not even one female. We understand the neurotypical world (to the degree that we do), but we are only on the cusp of learning about the neurodiverse female world and what this group are truly capable of, when given the right support. This is about understanding females on the Spectrum and then designing appropriate interventions according to their presentation. For example, the passive presentation will need assertiveness training whereas a different social type will need a different intervention. It would be unfruitful to put all females in the same social skills or intervention group.

Whilst these girls and women are different, they all share the same common core characteristics, that of social, emotional, cognitive, sensory, intelligence differences, in addition to other co-existing disorders or conditions. This makes for complex presentations. By no means can one type be put in a box. A female can be 2 or 3 types or morph into all types throughout their life-time.

These are just some of the various ways that Autism presents, how some females may present and how they may cope with having a different brain. Autism influences many factors and all types and interests are just as important as each other. We need as many different brains and as many different neurodiverse females as possible. We also need to know the differences in presentation, so that we can now design and implement the right support and intervention for the right girl or woman.

Neurodiverse girls and women have much to offer, regardless of neurotype, interests, dress, differences and/or similarities. There are no stereotypes, just a variety of presentations and profiles, all valid and all very special.

#nomoreemalesleftbehind #beyourownsuperhero #aspiengirl #aspienwoman #aspienpowers #behindthemask

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Copyright 2017 Tania A. Marshall http://www.aspiengirl.com http://www.taniamarshall.com

No part of this may be used, reproduced, borrowed or copied. This is an excerpt from Behind The Mask

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