So I will admit straight off: yesterday’s post was a bit of a long and winding one, and did not particularly go the direction I intended it to go. This is something which has become more and more true for me in my writing and I’ve somewhat lost the ability or desire to fight it. Now I try more to keep loosely driving to the point I’m hoping to make, but mostly just letting it flow, however it goes.
With that said, something I had hoped to have more space to talk about yesterday was the particular selection of books and blogs and other resources which allowed me to feel that vivid sense of recognition with the stories of other autistic people, particularly (though not exclusively) autistic women. So for today, Day 5 of my 30-days-of-blogging challenge, I’m going to talk about some of the books and blogs which resonated deeply with me and why I loved them so much.
Two of the autistic authors/advocates I found early on in my search were Samantha Craft and Amythest Schaber. I remember reading through the personal anecdotes and the checklist on Samantha’s blog and feeling a kind of sinking resonance. At the time I first came across Sam’s Non-Official Checklist for Females with Aspergers, I was still very much in denial about the whole idea. I was still pretty convinced that what was really happening was that a lot of Highly Sensitive People and Empaths were being misunderstood and pathologized and labeled as being autistic, and that there was nothing wrong with us (and conversely, there was something clearly wrong with autistic people). I had yet to unpack my own internalized ableism as described in yesterday’s blog post. So while I went down this list checking every box, ultimately bought her book and resonated with virtually every essay, I still didn’t see myself in the picture of “autism” I had in my head, and I thought people like Sam must just also be confused…
I want to make a small side-note here that the diagnosis of Asperger’s has been phased out for several good reasons (the problematic nature of Hans Asperger himself and the problematic nature of functioning labels or anything akin to functioning labels as two good reasons). Kieran Rose, The Autistic Advocate, has a really good article about this, so I won’t go into too much detail about why here. At the same time that I was resonating with and simultaneously doubting what I found in the writing of Samantha Craft, I found the YouTube channel of Amythest Schaber and for some reason I trusted their descriptions a bit more. Things were starting to click in my brain around the idea that the “panic attacks” I had been experiencing my whole life didn’t actually involve much fear, but more of a concentrated sense of rage--something someone pointed out to me during an attempted therapeutic hypnotic regression into one. Googling things like “rage attacks” brought the concept of autistic meltdowns to my awareness, and the recognition was similarly unsettling. That’s how I found my way to Amythest’s “Ask An Autistic” YouTube series and learned a great deal about autistic meltdowns, shutdowns, stimming, echolalia, and other features of autism that I could relate to but still felt uncomfortable about, so kept at a bit of a mental distance. I’m being a bit fuzzy on the chronology here because there was so much self-denial and back-and-forth in my research process. Periodically I would run into something (like my Googling “rage attacks” and finding references to autistic meltdowns, or my experience of going nonverbal during one that I described yesterday, or someone commenting on a blog post about empaths sincerely suggesting that the author look into autism in women) which would bring my attention back to autism as a possibility.
It felt like something lurking in the background, in the shadows, that I couldn’t ever fully get away from. I felt myself torn between having finally found an explanation for my experiences, but not wanting to let go of the idea that there was nothing wrong with me and in fact there must be something extra special about me. I read and understood the criticisms of functioning labels, I recognized the traits in myself, but I simply wasn’t willing to accept it, and regular life kept getting in the way, so I pushed it to the back of my mind again and again. Later, I came back to the topic with more seriousness and a calm mind, after hitting yet another wall in the form of one more failed, miserable relationship and one more overstimulating, toxic, miserable workplace, and the resulting utter chaos of mysteriously failing health. And further, I had been disenchanted by any notion of New Age “specialness” and I just genuinely wanted answers. Was I autistic or not? This should be a yes or no question, and once I had the answer, I could plan accordingly. This is when I bought the book “I Think I Might Be Autistic” by Cynthia Kim, read it, concluded that I must be and decided not to seek diagnosis.
It was only after I came back to this realization and sought formal diagnosis (nearly two years later) that I began devouring personal stories of autistics and revelling in the familiarities, reviewing my own history with a sense of humor and joy (and more than a little grief). I watched nearly every video on Yo Samdy Sam’s YouTube channel and consumed the memoirs of Jeannie Davide-Rivera and Sarah Kurchak. The familiarity of all of it--the highs and the lows--the bubbly joyful quirkness and the gut-wrenching grief of being a perpetual outsider--was balm to my soul, and helped solidify my sense of self-acceptance. Finally, I’m currently diving into Cynthia Kim’s memoir and experiencing much of the same joy.
I should mention that along with reading these personal, deep-dive memoirs, I also read the anthology Knowing Why from the Autistic Self-Advocacy Network and the clinical overview from a personal perspective Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. I can’t say I relate to or resonate with everything in either of these texts (or any of the resources I have listed, for that matter), but these two in particular gave me the much-needed perspective of: not everything about every autistic person has to resonate with me. There were enough common themes for me to see the threads throughout my life and my family, and there was enough variation in the stories listed for me to see that my own uniquenesses didn’t make me “not autistic”, they just made me uniquely autistic (like every other autistic person).
I realized that many of the things I thought “everyone” did or thought, were actually much, much less common among neurotypical people. And just as important: I learned that just because I didn’t resonate with something I read didn’t mean I couldn’t be autistic. There is enormous variation amongst autistic individuals… and we have some clear, distinctive patterns of thought and behavior. I look forward to the day when actual autistic adults are driving the research into autism and we can better understand the autistic spectrum and how it differs from neurotypicality.
Resources for Autistic Recognition
Samantha Craft’s Non-Official Checklist for Females with Aspergers from 2012
Asperger’s Syndrome: What’s in a name? By Kieran Rose (blog post)
Amythest Schaber’s YouTube channel (and “Ask An Autistic” specifically)
Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx (book)
I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder by Sarah Kurchak (book)
Twirling Naked in the Streets and No One Noticed by Jeannie Davide-Rivera (book)
Nerdy, Shy, and Socially Inappropriate by Cynthia Kim (book)
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