This article by Maia Szalavitz appeared in the March 1, 2016 Scientific American. It reads like a who’s who of institutions and autism ‘experts’. It even included the voice of ONE #ActuallyAutistic woman and the mother of an autistic teen girl.
Yet I could barely force myself to dredge through the typical language and assumptions made by most ‘experts’, including:
Person first language – girls/boys with autism, people WITH autism. Is it really SOOOO hard to adopt the clearly preferred language of the group with which you work? It has not been so with ethnic minorities even when language has changed over time colored/negro/black/African-American, Mexican-American/Latino or for sexual orientation gay/homosexual. In fact, politicians and researchers are almost obsessed with getting it right…politically correctness. But not so with autism where it is the voice of ‘experts’ and parents who seem to control the dialogue rather than the #ActuallyAutistic. WHY?
Functional labelling – I grew exhausted from the words…higher functioning, Asperger’s, and the opposite…intellectual DISABILITY. As the autism community points out, these labels are about neurotypical perception of the autistic individual than the experience of the autistic person with their challenges.
Fitting In – To society seemed to be the only goal, measure of success or self-worth postulated by the author and researchers. Much of the research focused upon the social impairments associated with autism. And the examples of the ‘support’ needed and given to autistic girls and women focused on hygiene, dress, and further encouraging the mimicking which may have delayed their diagnosis…and which #ActuallyAutistic women tell us causes increased stress. No consideration was given to the positive elements of being an #ActuallyAutistic woman.
As the mother of a #HappilyAutistic and #ProudlyPDA girl, I was left wanting particularly in terms of the research and information I seek. As someone who believes autism is the next jump in human evolution (the A-Men…and women OF COURSE), I was disappointed not to see any mention on research in the arenas which interest me most…executive functioning and memory. My experiences with PanKwake and what I hear from #ActuallyAutistic women say that these may be key areas of difference between the sexes. Yet all focus was upon the superficial way in which NT ‘experts’ and parents experience autism…primarily social.
For me, this article only gives further credence to what I hear from the #ActuallyAutistic…that research does not listen to their voice or speak for them. And while I agree that more needs to be done to understand how sex (male/female not the naughty stuff) affects the presentation of autism…and vice versa…the lack of depth in this article clearly illustrates…
Nothing for us Without US!
I hope you enjoyed this article review. I have dozens (hundreds) of bookmarked articles on autism. My goal is to share one each week with you…and perhaps work my way through some of them. Though likely it will become a losing battle as I will probably end up adding to the pile faster than I can write reviews. Of course, I don’t want you to take my word for it. I always link to the article to encourage you to read it…and THINK for yourself.