Women and Girls with Autism Spectrum Disorder – Sarah Hendrickx

Excerpt:

I was comparing myself with the male presentation, and I didn’t fit. Specifically, I was using my partner, Keith, who has an Autism Spectrum Disorder (ASD) diagnosis himself, as my control sample. In fact, I was so convinced of my somewhat neurotypical (NT) status that Keith and I wrote a book about our Asperger Syndrome (AS)/NT relationship (Hendrickx and Newton 2007). Increasingly, I realised that we were very similar in many ways and that I just ‘got’ him in a way that other NT people had struggled to do. I realised how incredibly logical, routine orientated and systematic I am, but with no interest in technical things like he has. My fascination is people and how they operate (most typically articulated by a frown and ‘Why do they do that?’). I realised that I struggle enormously socially, yet do social events anyway at great mental cost to myself, because I am supposed to, whereas he will just say ‘no’ and avoid any discomfort. (p.15)

Review:

Yeah, this book was basically like a 250 page profile of me as a person. I saw reflected in the text many of my habits and beliefs. Some of it was just standard nerd girl behaviour (like being shy and getting lost in books, being the teacher’s pet growing up) but others were things that I thought was unique to me (like feeling calm before presentations and incredibly jittery afterwards). The book is organized into chapters by life stage (childhood, adolescence, adulthood, aging) and… activity? (education, employment, personal relationships), and in basically every chapter I’ve found points that reflect my own experience.

However, there was a huge emphasis on “black and white thinking” and “routines” as pillars of ASD, neither of which I think are applicable for me.

It should be noted that the book has some transphobic elements. The author talked about chasing transmen for their testimony and seemed bemused that transwomen responded to her interview requests. If you’re not about this but still interested in the book, skipping the intro will save you from the most egregious bits.

Personally useful concepts introduced:

  • Male-centricity of ASD diagnosis – there are significant differences between the male and female ASD phenotype, but since most of the literature since early on was based solely on studying males, females with ASD often fall through the cracks… which then perpetuate a skewed ratio of diagnosis, so that further studies are mostly based on males, and so on and so forth.

  • Masking – imitating speech and movements of others (real or fictional), sometimes without a deeper understanding of the silent laws of ordinary social interaction. This allows the masker to appear very social and verbose, but on examination this can be found to be mostly scripted, learned, and made natural seeming through practice. What’s frustrating is that this is a well documented behaviour of females with ASD, but only a few professionals are working to improve diagnostic processes to consider this.

  • Humanity/people as a special interest being common – this kind of seems fitting. I’m really interested in humans in an abstract sort of way. I’m intrigued by the way that people interact and instigate status games and fall in love. The logistics chains and complex systems we made. Our history and poetry and art and stories. The unfortunate thing is just that actually interacting with people is stressful af.

  • Communication as a jagged profile – Yeah, mood. I can host meetups and present to hundreds of people and have a good time hanging out with people one on one. But when there’s no roles and no structure for me to grasp onto, like at a party or in a group conversation with casual acquaintances, it’s hard for me not to feel uncomfortable and anxious.

  • Also, this link to a profile of adult women on the spectrum developed by one Tania A. Marshall. The website sucks and you gotta scroll down a bit past all the self-promo to get to the profile, but once you hit it, the research is rich and incredibly well done.

  • Secret thing (approximate page range p.173-176)