The Female Autism Crisis: Assessment and Diagnosis of the Neurodiverse

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Updated February 18th, 2017

This is a sample of the book entitled Behind The Mask and is therefore under copyright law. Behind The Mask give voice to neurodiverse females and discusses the assessment diagnosis and support of females on the Spectrum.

Tania Marshall, M.Sc. is available for diagnostic impressions reports, assessment, diagnosis and intervention, support and problem-solving sessions in-person and/or via Skype. All queries, please email admin@centreforautism.com.au

I chose to write my book series after numerous requests for information on the topic. I also chose to self-publish, so that I can regularly update my work, keep my work current with the speed and amount of the research in the area (a challenge to keep up with for a professionals in the area), keeping my work fresh, current and in real time, rather than a long waiting period and being out-dated.

Over my career, I have I worked with hundreds of neurodiverse, Gifted and Talented, and 2e individuals.They may have labels that consist of Autism, Aspergers, Non-Verbal Learning Disability, Twice-Exceptionality, Semantic-Pragmatic Language Disorder, Oppositional Defiant Disorder, Anxiety Disorder, Bi-Polar Disorder, and many more. Irregardless of the ‘label’, these individuals have many significant strengths, gifts, abilites and/or talents, and this topic is discussed in ‘ AspienPowers’.

In working with neurodiverse individual across the lifespan, I have written and spoken about and or refer the ‘female autism crisis’. There are many factors involved, some of which include:  a lack of professionals trained in the area, gender differences, the female autism bias and the lack of assessment tools.  We are a long way from developing efficient tools for assessing neurodiverse girls and woman. The following slide is from the Recent presentation review of key measures, gender and autism at the 2016 XI Autism-Europe International Congress and shows that the ADOS/ADOS-2, the ADI-R and the SCQ favor males. This is a real problem and a crisis because these are the very tools that many professionals use when they assess females. They are sometimes a cause of females flying under the radar of a professional.

I have been referred many females who have had these tools previously completed on them and have not been given a diagnosis. This can be due to the tools inability to measure the subtle signs, client masking, compensatory mechanisms and strategies and/or the even the rigidness of the professional in using the tool or the over-reliance of using these tools versus asking the right questions and looking for the subtle signs in body language, facial expressions, asking the right social questions, evaluating areas such as context blindness, synaesthesia, Irlen Syndrome, sensory processing issues, and more.

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In assessing girls on the Spectrum, it is important to ask the right questions. I cannot emphasise this enough. There are many questions to ask and what follows are some examples. Keep in mind that high average to profoundly intelligent girls can tell you the socially acceptable answers that you as a professional want to hear, but they are unable to actually perform those unwritten social rules or if they can, they are not as fast at it as their peers or it comes off as just slightly awkward. You need to look at this subtle non-verbal signs which I will be discussing In an educational series.

Many girls and women with Asperger Syndrome or Autism have a tendency to be over-loyal and over-trusting, have a lot of emotional empathy, often just ‘seeing’ that a person needs help or saying they person needs help and taking things literally or not being able to ‘see’ the social context of a situation (for example, bringing home a homeless man because he has no home or food, yet not seeing the inherent dangers in doing this).

  1. What is bullying? What is teasing? What is bitchiness? How do you know the differences? When should you help someone? When shouldn’t you help someone?
  2. Sample questions in the area of friendship friendship should consist of: What is a good friend? What are some healthy ways of making and keeping friends? How long does it take to make and keep a best friend? Who are your friends? How do you know they are your friends? Do your friends try to get you to do things you dont feel is the right thing or that you feel uncomfortable with? (For example, do they try to get you to do your their homework, reports school work? Do they get you to buy things for them? Do they try to get you into trouble (for example, do they say they’ll be your friend if you do something for them?) What do you do at lunchtime? What do you do with your friends? What kinds of activities do you do with your friends? Do you prefer one best friend or a few friends? How long have you known your friend/friends for? Do they come stay over at you house and vice versa (if applicable). What do you talk about with your friend(s)? Professional Tip: Try to find out if the conversations are more one-sided or are they reciprocal, that is the conversation takes turns; it is a two way street rather than just a one person conversation involving 2 or more people.
  3. Sample Questions of play or hanging out may involve: How often do you play it hang our with your best friend/friends? Who initiates the play? Do you ask your friends to come over? Do they ask you to come over? Professional Tip: Often girls will text or cling too much to a girl, often driving them away.
  4. Does the girl or teen understand the social hierarchy? Do they understand how groups in school work? Do they understand the role the group members play? Why do you think the girls at school engage in these behaviors?
  5. Why is it important to keep a promise? Should every promise be kept?
  6. Why is it important to apologize when you’ve hurt someone? Professional Tip: Some girls adamantly refuse to apologize and some girls over-apologize.
  7. How do you know if someone is trying to get you into trouble? How do you know who you can and cannot trust as a friend?
  8. How do you know a particular person is safe to have as a friend? What kinds of clues might alert you that this person is dangerous? How would you know you are being taken advantage of?
  9. What are boundaries? How do you enforce a boundary?
  10. Do you prefer one-on-one friendships or hanging out in a group?
  11. Do you feel anxious around other girls? Girls often internalize their anxiety and can hide it very well. For those girls that are unable to “hold it in”, they may receive a diagnosis earlier than other girls. Remember that is it common for girls to be unable to explain why they are having difficulty in a social situation. They do often discuss not feeling well or may speak of feeling sick, feeling nervous or scared. They may often be in the sick bay.
  12. How long can you socialize for? Do you feel like you need a break? Does socializing make you tired?
  13. Teenagers with Aspergers often have eating disorders, an escalation of anxiety and depression and/or self-harm. Asking these questions is important. Investigating self-harm is also important. Girls are very good at hiding their cutting. Demand Avoidance is commonly seen in girls and women with Aspergers. Avoiding demands is caused by anxiety and/or not knowing how to do the task at hand and /or being embarrassed or socially anxious about a task. This is context-dependent and can look like making up excuses as to why she cannot do something that you know she can do to refusal to do something asked of her to refusing to comply with requests by an adult to avoiding the social playground.
  14. Many girl and women have a flat affect on their face, so that family members or professionals cannot tell how they are feeling.
  15. Some girls and women have Alexythymia and/or Faceblindness. Most experience extreme emotions and some girls may receive a diagnosis earlier than others to their meltdowns and/or violence.
  16. Many, if not all girls and women mis-interpret social situations (for e.g., “none of the teachers or kids at school like me”). Upon further investigation/assessment, it is found out that the individual misinterpreted facial expressions and social context, in an assessment.
  17. An assessment should involve reading of the eyes to see how well an individual can read non-verbal facial expressions from the eyes.
  18. An assessment may include listening to a variety of different tones of voice to see if the individual can distinguish the underlying feeling behind the tone.
  19. An assessment should also investigate other senses (both sensory issues and emotional empathy or “empath” characteristics). These questions need to be asked in a certain way as many females are literal, so a careful exploration is essential. An investigation of synaesthesia may be warranted.
  20. An assessment should also explore social naivety, the differences between lying and ‘white lies’, ‘pink lies’, social diplomacy, social tact and theory of mind.
  21. For teens and women, how do you know when someone is flirting with you or wants to go on a date with you? Do you know how to diplomatically reject the advance of another person? Professional Tip: Assertiveness training is essential for many females.
  22. In relation to gender and sexuality, a smaller group of girls (and boys) feel confused by their gender, and this can range from mild to severe. A thorough exploration of this issue often finds the individual relating better to the opposite gender, with girls getting along better with boys, being androgynous and/or Tomboy-like, and boys seeing other females as very socially successful and appearing to have lots of friends. Sometimes, an individual in their search for why they are different or why the social aspect of their life are so much more work for them, then come to the conclusion, for a variety of reasons (the feeling that others do not like or accept them, they do not like themselves, always having that feeling of being “different” to their peers), that they may have been born in the wrong body (they may be able to have more friends or be liked more, feel more accepted, feel “better” inside their body, be happier within themselves and within their family, be socially better or more popular), if they change their gender or their sexuality. Rarely, does changing one’s gender or sexuality fix the underlying social communication and identity issues, including being bullied, ignored or excluded and/or self-esteem challenges. Depending on how rigid or black and white the person is in their thinking, this can be a challenging issue to work on with the person.
  23. An exploration of identity in teenagers and women is important. This is because, over time, an assimilation of other people’s characteristics traits, voices, accents, behaviors has occurred, in addition to what others and society expect of them and from them. This high price (masking) often leads to a complete loss of identity.
  24. Many professionals are not aware that females can and do make eye contact, do make superficial conversation for short periods of time, and can have friends.
  25. Many professionals are unaware of the variety of sub-type presentations of girls across the Spectrum, with the ‘princess’ or ‘supermodel’ type, and/or those with higher intelligence, being the ones to be least diagnosed or diagnosed at a much later age. They are often Twice-exceptional (2e) individuals and blend in very well.
  26. Strengths and abilities are often overlooked due to the “presenting problem(s)”. Once these are addressed, then can an individual’s true gifts (for example, perfect pitch, artistic creativity, acting, dancing, programming, languages, just to name a few) can be nurtured and evolve into careers.
  27. Individuals on the Spectrum can and do lie, just like anyone else does. They dont do it as well as their peers and the reasons for lying may be different
  28. In terms of friendships, females are able to make friends, however they can often have a challenging time keeping them.
  29. A females sense of justice and high moral compass can be a clue and some females have been known to take their enlarged justice glands too far in their causes.
  30. Females with social problems often use their intelligence (sometimes quite successfully) to compensate for their lack of social skills, often falling into leadership roles, caring roles, teaching roles, acting roles, lawyers, professors, amongst other, where social reciprocity is least expected and social scripts (and slides!) can be adhered too.

Briefly, what we need to be asking are the right questions, looking and searching for and asking about questions that have to do with social confusion, camouflaging (how are the hiding it?), compensatory mechanisms (strategies they use to attempt to fit in, hide their confusion), eating disorders, gender, sexuality (if appropriate) and identity issues.

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This is a sample chapter of ‘Behind The Mask’, and is therefore under copyright law. In Part I of this book, it  explores the narratives and themes of the neurodiverse female clients that Tania has worked with over the course of her 20-year career. Part II includes chapters on assessment, diagnosis, how to explain the diagnosis, what next and support and intervention. For more information on female neurodiversity, go to:

http://www.aspiengirl.com

http://www.taniamarshall.com

Copyright 2014-2017 © All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.

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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.