Flying under the radar: Girls and Women with Aspergers Syndrome

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 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 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.
  • 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 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 and do 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.

The following are recommended resources and sources of information:

Recommended Resources:

Safety Skills for Asperger Women, by Liane Holliday Willey

Facebook: http://www.facebook.com/aspergerwomenaustralia

References

Asperger, H. (1944). Die autistischen Psychopathen im Kindesalter. Archiv fur Psychiatrie und Nervenkrankheiten, 117, pp. 76-136

Attwood, T. (2000). Asperger syndrome: Some common questions: Do girls have a different expression of the syndrome? Available from: www.asperger.org/asperger/asperger_questions.htm#girls

Brugha, T. (2009). Autism spectrum disorders in adults living in households throughout England: report from the Adult Psychiatric Morbidity Survey 2007. The NHS Information Centre for Health and Social Care. Available from: www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-health-surveys

Ehlers, S. & Gillberg, C. (1993). The Epidemiology of Asperger syndrome. A total population study. Journal of Child Psychology and Psychiatry, 34 (8), pp. 1327-1350

Gould, J. & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis: girls and women on the autism spectrum. Good Autism Practice, 2011, Vol.12 (1), pp. 34-41

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2 , pp. 217-50

Lord, C. & Schopler, E. (1987). Neurobiological implications of sex differences in autism. In: Schopler, E. & Mesibov, G.M. (Eds.). Neurobiological issues in autism. New York: Plenum Press, pp. 191-211

Rimland, B. (1964). The etiology of infantile autism. In: Infantile autism: the syndrome and its implications for a neural theory of behaviour. New York: Appleton-Century-Crofts. p. 54

Skuse, D.H. (2000). Imprinting the X-chromosome, and the male brain: explaining sex differences in the liability to autism. Pediatric Research, 47 (1), pp. 9-16

Wing, L. (1981). Sex ratios in early childhood autism and related conditions. Psychiatry Research, 5

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

16 thoughts on “Flying under the radar: Girls and Women with Aspergers Syndrome

  1. Thank you! I am a 42 year old woman recently (and tentatively) diagnosed with high-functioning autism. (I’ve long been diagnosed with a number of mental health issues.) Your blog is incredibly helpful – and I now have my reading list to get me forward.

    • Hello J, thank-you for your message. You are one of a very large number of women in their thirties, forties, fifties, and sixties who are being diagnosed. This group of women are known as the “lost generation”, because they were missed, and often still are missed, in terms of diagnosing. We also refer to females as “research orphans” because they were not included in research studies. There are few formal diagnostic assessment tools for females, although that is going to rapidly change soon.

  2. Thank you so much for this. I was diagnosed with Asperger’s 3 days ago, age 35, after years of knowing I wasn’t like other girls but also not seeming to be like ‘typical’ autism.
    Just starting to learn more, and your post describes me to a tee. It’s so good to find some understanding and recognition.

  3. I don’t have a website as I’m not a blogger. I think that may be a requirement to post as I thought I had a reply pending moderator review but is not posted. Anyway, like the woman above, older ( 49 ) and am positive that I have this syndrome – am hoping to get an official diagnosis to get the added help I feel I need, some good reasons to show additional patience with myself, and good reason to stop interrupting myself as I discuss things to indicate to others, “oh and this is why…I think I have Auspergers “!

    Thank you for your avid academic interest in this subject to help people like us to help ourselves further! – Cate

  4. I found more on “deep acting” here and wonder if it applies in particular to “Aspie” girls/women? Especially after reading this comment:

    ‘… To deal with negative emotions, people tend to do one of the following:
    Show emotion they don’t really feel.
    Hide emotion they really do feel.
    Create an appropriate emotion for the situation.
    You can do this using two emotional labor techniques:Surface acting – You fake, or pretend to have, an emotion by using unnatural and artificial body language and verbal communication. Smiling and using a soft tone of voice help you show emotion that you don’t feel, or hide emotion that you do feel.
    Deep acting – You control your internal emotions, directing them to believe that you actually are happy, and enjoying the interaction with the other person. Rather than feel like you’re pretending, you convince yourself you’re not experiencing a negative reaction.
    When you continually need to show only those emotions that are appropriate for the job, despite how you really feel, this can often lead to emotional conflict between your real emotions and those you show to others.
    Some researchers believe that emotional conflict like this leads to emotional exhaustion and burnout for workers – and that hiding your emotions on a regular basis leads to high levels of stress, and even a disconnection from close personal relationships. However, other studies have not found a connection between emotional conflict and emotional exhaustion.
    A popular theory to explain this inconsistency in research findings is that individuals vary in their ability to deal with inauthentic, or ‘pretend,’ emotional expressions. Some workers may be able to identify with the organization’s values of positive emotional communication, making them better prepared to express appropriate emotions. Also, people who are generally more cheerful and pleasant may be able to turn off negative emotions more easily than others.
    Another factor may be a person’s ability to recognize different social situations, and how to behave appropriately. People with more negative personalities and lower social awareness tend to have the hardest time dealing with emotional conflict – and they probably experience emotional exhaustion more easily….’ Emotional Labor – Team Management Training from http://www.mindtools.com/pages/article/newTMM_44.htm

    ‘The Outsourced Self,’ by Arlie Russell Hochschild http://www.nytimes.com/2012/05/27/books/review/the-outsourced-self-by-arlie-russell-hochschild.html?pagewanted=all&_r=0
    The Managed Heart: Commercialization of Human Feeling by Arlie Russell Hochschild http://www.amazon.com/books/dp/0520272943
    Arlie Hochschild: The Presentation of Emotion http://www.sagepub.com/upm-data/13293_Chapter4_Web_Byte_Arlie_Russell_Hochschild.pdf
    Emotional Labour: The Human Resource Issue http://www.jcu.edu.au/tldinfo/writingskills/models/papers/MG2703essay1.pdf

  5. I also wonder how much a certain amount of co-dependence can creep into friendships and go unrecognised, especially when one is feeling insecure within themselves, or when certain signals are not noticed in a friendship? I watched the DVD “When Love Is Not Enough”, based on the founder of AA and it got me thinking about a wider context. I came across it when looking at the history of the Serenity Prayer which the friend in question gave me a while ago, which I thought was rather ironic!! Considering that obsessive tendencies are common with those of us on the spectrum, I wonder how much various addictions might play a part in our lives at times?
    http://www.imdb.com/title/tt1547035/
    http://www.amazon.com/movies-tv/dp/B003JO6OPO

    • And here’s a link on Co-dependence: http://www.mentalhealthamerica.net/go/codependency

      “…Questionnaire To Identify Signs Of Co-dependency

      This condition appears to run in different degrees, whereby the intensity of symptoms are on a spectrum of severity, as opposed to an all or nothing scale. Please note that only a qualified professional can make a diagnosis of co-dependency; not everyone experiencing these symptoms suffers from co-dependency.

      1. Do you keep quiet to avoid arguments?
      2. Are you always worried about others’ opinions of you?
      3. Have you ever lived with someone with an alcohol or drug problem?
      4. Have you ever lived with someone who hits or belittles you?
      5. Are the opinions of others more important than your own?
      6. Do you have difficulty adjusting to changes at work or home?
      7. Do you feel rejected when significant others spend time with friends?
      8. Do you doubt your ability to be who you want to be?
      9. Are you uncomfortable expressing your true feelings to others?
      10. Have you ever felt inadequate?
      11. Do you feel like a “bad person” when you make a mistake?
      12. Do you have difficulty taking compliments or gifts?
      13. Do you feel humiliation when your child or spouse makes a mistake?
      14. Do you think people in your life would go downhill without your constant efforts?
      15. Do you frequently wish someone could help you get things done?
      16. Do you have difficulty talking to people in authority, such as the police or your boss?
      17. Are you confused about who you are or where you are going with your life?
      18. Do you have trouble saying “no” when asked for help?
      19. Do you have trouble asking for help?
      20. Do you have so many things going at once that you can’t do justice to any of them?

      If you identify with several of these symptoms; are dissatisfied with yourself or your relationships; you should consider seeking professional help. Arrange for a diagnostic evaluation with a licensed physician or psychologist experienced in treating co-dependency….”

  6. I have been reading up on women’s traits with Asperger’s a great deal. There was often this feeling of weirdness when I could tell that my gesturing while speaking reminded me of someone else in the circle of people who I was with…I was apparently aware that I was mimicking on some level, but at the same time was confused by why I was doing this, was aware of this, etc. Also in my late teens, learned of the importance of eye contact in job interviews from a mag. article. But would then be accused of staring by family members, told to “blink, G*d D****t!”, questioned by H.S. night class instructors whether I had zoned out, was “lost” etc. OMG, I just can’t believe how relieving this is, knowing that there is this additional diagnostic tool in development helping us understand ourselves more. I’ve gone gluten free since 2005 and have rid myself of the need for the oral medication for asthma, accolate, which was severely damaging the livers of some people. Social faux pas traps. It just goes on and on. And one other very important item, that of finding difficulty in leaving relationships that one knows aren’t working. As though we purposefully expose our ‘polite button’ to people to press to keep us responding in ways predictable to OTHERS. Oh My! Relief-city, if I may note just once more. “Bless your heart”, really!!
    Cate

    • Hello Inkyboymamma, thank-you for your message. Residual Aspergers is when a person now does not meet the criteria a formal diagnosis of Asperger Syndrome. Everyone has some pieces (traits or characteristics) of a 100 piece puzzle, but when you have 90 pieces or more, then Asperger Syndrome is an applicable explanation. One of the most common characteristics of women with Aspergers is an intense love for reading, fiction or non-fiction or both. I have seen and heard of many females being missed because the professional told them they had “eye contact”, they could carry on a conversation, and so on. Professionals are most often using male-based assessment tools, unaware of the female profile. Until professionals become more familiar with the female profile, these kinds of misdiagnoses will continue. I will check out your blog. All the best!

      • Temple Grandin said she believes the term “Asperger’s Syndrome” shouldhave been left in DSM 5, as an alternative term for Autism. She agrees its part of the spectrum of Autism, and is scientifically backed by cresearch. But is concerned that people will be deprived of services by changes in DSM 5.

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