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.