Females with ASD

No. VI / Composition No.II 1920 Piet Mondrian 1872-1944 Purchased 1967 http://www.tate.org.uk/art/work/T00915 Creative Commons CC-BY-NC-ND 3.0 (Unported) licence
No. VI / Composition No.II (1920) by Piet Mondrian (1872-1944) Purchased 1967 http://www.tate.org.uk/art/work/T00915
Creative Commons CC-BY-NC-ND 3.0 (Unported) licence

Sarah Hendrickx
Women and Girls with Autism Spectrum Disorder:
understanding life experiences from early childhood to old age

Foreword by Judith Gould
Jessica Kingsley Publishers 2015

Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. http://www.autism.org.uk/about/what-is.aspx

Autism Spectrum Disorder (ASD) was for long considered a condition solely characteristic of males, but thankfully it is now recognised that girls and women get it too. That not all professionals are up to speed on this is illustrated by the author’s own experience: only recently diagnosed herself (and this after several years studying the condition closely) she found to her distress a male clinician not only incredulous that a woman could have ASD but also questioning the reliability of the diagnosis. For females however there are many differences in their manifestation of the condition; because diagnosis of autism was traditionally based on male behaviour patterns, female presentation of those behaviours didn’t necessarily conform to male norms. In addition many females soon learn — usually better than males — how to play the game when it comes to social expectations, and this can mask their underlying condition.

But the crucial point to make is that women and girls are statistically just as likely to have the condition, and Hendrickx’s work aims to contribute to the pressing need for an “account of the female phenotype to better identify and help ASD females.” In her own case despite an IQ of over 150 and years of being a consultant on ASD (not to mention a parallel career as a stand-up) she still came late to a diagnosis; how much more pressing must it be for females who have felt they were different from what scientists call a neurotypical (NT) population but had never been in a position to establish why?


In this enlightening study — using qualitative rather than quantitative methods — Hendrickx asked a sample of around thirty females (some adults with ASD and some mothers with girls on the spectrum) questions about their experiences, and also drew on the existing literature. Areas covered included childhood through adolescence to adulthood; sexuality, gender identity and personal relationships; pregnancy and parenting; health and wellbeing; employment; and ageing with autism. The responses, as one might expect, show many commonalties but also, unsurprisingly, that preferences vary and that sensitivity to the condition can range from mild to at times debilitating.

As a male with ASD I found it fascinating to compare and contrast my point of view with those of females with ASC (Autism Spectrum Condition, a term which some prefer as less judgemental than ASD). I was able to gain insights into the thought processes of ASD women I know and see how their responses to different societal pressures might vary from mine, coming as they do from different expectations. The many articulate replies also underline for any NT readers how the still prevalent popular conception — that those with ASD are only either savants or those with severe learning difficulties — is very far from the whole picture.

Particularly incisive were these women’s hopes for the future when they were asked to describe how they would like to see the future. They knew that directed support would improve their quality of life after diagnosis; they also listed as features of an ‘ideal life’ being stress free, having an understanding partner, enjoying financial security, and being able to live independently or alone — but not isolated. I’m sure that many of these ideals would appeal to NTs too but the list does give a clear idea of the priorities of many on the spectrum, and not just females.

I found this an informative and encouraging book, one I feel privileged to have had a chance to read. It is also well researched and written, and is aimed as much to the general public as it might be towards professionals who want to understand how female ASD presents in contradistinction to male-biased diagnoses. For many it’s been a long time coming.

Advertisements

12 thoughts on “Females with ASD

  1. Kinda Bexy

    Thanks for the share. Only, Composition No.II really, really (and here I make a sort of angry face tight face) annoys me, apart from the white square (and here my face relaxes into a smile). That is all.

    1. I instinctively chose a Mondrian (this one in a public collection) but then found out he is reckoned to have also been on the spectrum. Perhaps it’s more a male thing, to like this gridded composition! I agree though that the colour choices are a little more aesthetically challenging. 🙂

  2. Kinda Bexy

    I love this one and not sure if it is from Piet Mondrian and I’m working on something similar myself in oils with leaves… it is as if one can almost jump in and go “Woohooooo!”

    1. Its intensity reminds me more of Georgia O’Keeffe’s work, though I think she used natural solids (skulls, shells, landscapes) as her subjects. Hope you’re pleased with your own work when it’s finished!

      1. Kinda Bexy

        and yet do I ever actually finish my paintings? (little bit more here, add a bit there, no wait, ummm… maybe some more here instead…)

          1. Kinda Bexy

            In that, I believe we might all be wonderful works in progress and we will be finished when we finish to start all over again, maybe..

  3. I find it really amazing that she didn’t find out about her ASD until much later, I just wonder really bow many people have it and possibly we might all have a little in us. By the way I like your picture, the colours are very calming……not sure if that means something 🙂

    1. It’s an extreme case of ‘Physician, Heal Thyself’, isn’t it? I think that sometimes we may be good at giving advice to others but less good at seeing it might apply to ourselves.

      When it comes to diagnosis I imagine that there are always going to be some aspects that we can all see in ourselves, but when out a bank of about 50 questions one is scoring 30 or more as opposed to, say, 15 then a positive diagnosis is more likely.

      When it comes to art I think that’s always going to be down to personal taste, whether ASD is there or not, but I have to agree with you, this Mondrian is calming but also a bit … intriguing. 🙂

  4. Interesting. I remember reading about how Temple Grandin consciously taught herself how to understand social cues and mimic the required responses. I wonder if women are more attuned to this aspect of life anyway and therefore better able to adopt some of the standard behaviours even if they don’t come naturally.

    1. This is certainly a behaviour that comes through strongly in a significant proportion of the responses in this study, Gert; I get the impression that Hendrickx herself had acquired many of those social habits, disguising the traits that mights have led her to any self-diagnosis sooner rather than later. But the physical and mental cost to the women who’d adapted against their nature was immense, typically leading to exhaustion or depression and other negative consequences.

Do leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s