WHERE TO GET THE BOOK: http://libgen.is/book/index.php?md5=F6B31A8DAFD6BD39A5986833E66293E6
People have been kind enough to link the audiobook in past posts, so hopefully they'll do that here, too.
CHAPTER ONE: WHAT IS AUTISM, REALLY?
In this chapter, Dr. Price discusses what the popular perception (read: stereotype) of Autism is, as opposed to what it actually is, and how it is just as much a social thing as it is a medical thing. How Autism often goes undiagnosed in people of color, women, gender nonconforming people, etc. He discusses the concept of neurodiversity and how it applies to ASD and ADHD people, AuDHD people, schizophrenics, BPD people, people deemed "low intelligence" or "low-functioning," etc. and how neurotypicality is not so much a described set of behaviors as an oppresive social ideal that literally everyone deviates from in some small way at least.
There's a heartbreaking passage in here where Dr. Price recounts his father tearfully revealing his cerebral palsy and seizure disorder to him as if it was a source of secret shame, how this is tragically rational because if he didn't hide it it might lead to losing his job or other forms of discrimination that disabled people of all stripes face. How avoiding a label can be a social asset in a world that deems you unfit for public life in many ways if you're labeled autistic. How even a late diagnosis can open you up to a world of new possibilities, and get rid of toxic shame you've had for a long time.
There's discussion of how the stereotype of Rainman Bazinga Sheldon is tied into the roots of Autism's first descriptions in medical literature, and how Hans Asperger played a role in this with his eugenicist beliefs and willing cooperation with the Nazi regime to exterminate children dubbed Autistic (as opposed to "useful" ones that could be trained to fit in as a lower class of person -- essentially "Asperger's" meant you got to live) and how that harms minority Autistics, causing them to go undiagnosed or forcing them to mask in more fundamental, soul-crushing ways, to avoid social misunderstandings that can literally be deadly for them.
From there we get a medically and socially up-to-date definition and breakdown of what Autism is, a simple explanation of some of the neurobiology involved, the neurological markers like focus on details and diminished ability to prioritize and differentiate stimuli and delayed emotional processing, and the various medical, psychological, and social impacts Autism has on those who are Autistic. There's a lot in here on neurodiversity, intersectionality, how stereotypes were formed, how to start recognizing them as such. There's also a lot on how unfairly the medical community and especially health insurance treats neurodivergent people, and so on.
Most importantly, this is where Dr. Price first advocates for the notion of Autistic self-determination. He stresses "self-determination" or "self-realization" over "self-diagnosis" because of the social aspect of Autism, and promises to expand on this notion further, which indeed he does.
So, discussion questions:
- What did you think of this chapter? Is there anything new you learned? Anything that really activates those almonds, gets the noggin joggin'?
- Are there any passages that really stuck out to you? Something you think warrants deeper discussion or really crystallizes something you were struggling to express or share?
- Any certified "literally me" moments that touched you?
- Anything you hope to explore further in upcoming chapters?
Tag post to follow, plus my thoughts in another post.
My own responses:
When I started reading this chapter for the first time, I was like "okay, finally, I'm going to find out how my ADHD is distinct from autism so I can glean what I might gain from this book" and ended it with "I am crying so so hard because I've been a masked autistic all of my life and things are making sense for the first time." I've tried discussing these feelings with my shrink (who dismisses the concerns due to the clinical approach to autism in the US right now) and my friend with a psych PhD (also dismisses my concerns because I know it's socially inappropriate to hit people or take my clothes off in public and wouldn't benefit from ABA) and my ADHD specialist (who says 'yeah maybe, explore it if you feel it will help you'). The explanation of some parts of the brain being essentially overactivated while others are underactivated makes sense to me. I have light and sound sensitivity issues, and frequently get upset (in a way I can't really express to anyone) about how my clothes are uncomfortable to the point of causing me pain sometimes. It led to me recognizing my frequent crying episodes (alone, where nobody can see or hear me) as autistic meltdowns, my long depressive slumps as shutdowns, and it was refreshing learning that autism is a very diverse thing and it's not just the white guy who likes trains stereotype. The discussion of Dr. Asperger being an evil eugenicist piece of shit is important too, as it informs a lot of stuff later on.
My passages are just two he just like me fr quotes: from Dr. Price: pg 32: "My sensory system is used to scanning the environment, to determine whether I'm alone and thus 'safe' enough to be myself." pg 35 from the patient "Crystal" pg 35: "Getting smaller and asking for nothing is how I kept people from calling me sensitive so often... That and assuming that if I was bad at something, it's because I was never, ever gonna be good at it. Better not to ask."
In upcoming chapters, I recall a lot of shit that made me cry and rereading is causing more crying. So looking forward to crying more I guess.
yeah, it was hard to get started on this chapter and then to finish it because it's all just so emotionally heavy
I would probably dip out entirely if it weren't for the book club, and I hope it'll be okay that sometimes I'm very late to contribute to the discussion because it's hard getting through such painfully meaningful material.
neurodivergent people and unnecessary apologies name a more classic combo
I'm glad this book club is helping some people stay with it. I'm glad I could do something for someone else, however small.