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 bazinga young-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? denji-just-like-me k-pain
  • Anything you hope to explore further in upcoming chapters?

Tag post to follow, plus my thoughts in another post.

  • the_itsb [she/her, comrade/them]
    ·
    edit-2
    9 months ago

    apologies for the late addition, it's been a rough week.

    Any certified "literally me" moments that touched you?

    He had erected an entire life around hiding who he was, and his defensive mechanisms had slowly killed him.

    Hey, look, it's me! 🤦

    I have almost died a few times from this kind of self-neglect, most dramatically when I ignored increasing abdominal pain for a couple weeks until my husband dragged my ass out of bed and into the ER for an emergency appendectomy. At least we were poor enough for Medicaid to cover it!

    Though a masked Autistic child has no way of explaining why they find life so difficult, they suffer all the same. Peers detect there’s something unnameably “off” about them, and exclude them despite their best attempts at friendliness.

    Oh man. Even my own little brother made fun of me for not having any friends and being so weird.

    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?

    When the child makes themselves small and inobtrusive, they’re granted some of the affection they desperately crave and never get enough of.

    This resonated with me pretty hard — people loved me when I was quiet and cheerful and observant, but anything expressive was too much. I make great first impressions, but once I'm comfortable enough to be myself, they stop liking me because I'm too excitable, too loud, too mad, too curious, too chatty, too sensitive; I've always been too everything. People like me better when I am unobtrusive.

    So they do it more and more, quieting the voice inside themselves that says how they’re being treated isn’t fair. They work hard, demand little, and play by society’s rules as closely as possible. They grow into an adult who is even more self-effacing, and even less capable of voicing how they feel.

    I grew into an adult who would "behave" to a certain extent but would eventually crack once things got to be too obviously unfair. Once I realize everyone is playing by a different set of rules and being dishonest, I just ghost them all or explosively burn social and career bridges.

    I killed a burgeoning DSA chapter with only one terrible act - I stopped participating because I felt socially excluded and overwhelmed and got burnt out. Everything dried up because everyone depended on my enthusiasm and motivation; once I stopped pestering to schedule meetings or do things, it withered and died. I still feel pretty awful about it.

    Anything you hope to explore further in upcoming chapters?

    There was some stuff in this chapter that I found a little bit confusing and contradictory (like being hyper-expressive and hyper-verbal versus flat affect and non-communicative, reading others' emotions super well versus not being able to read them at all, empathizing very strongly with others versus not at all, and whether or not we are intuitive) and that I hope will be explained further in the next chapter.

    Some of these things:

    Every case of Autism is a bit different, and traits can present in seemingly contradictory ways. Some Autistic people can’t speak; others are incredibly hyperverbal from a young age, with huge vocabularies. Some Autistics can read people’s emotions so easily that it’s overwhelming; others empathize with animals or objects, but not people; some of us have zero emotional empathy.

    Emphasized part is me. I was a little grammar, spelling, and vocabulary robot, and adults used to ask me to proofread things for them. I empathize with pets and people so strongly it can be hard to separate my own emotions. I talk to objects and treat them kindly. I am unfailingly polite and appreciative to my virtual assistant. 🤦😂

    But then there's this stuff from earlier in the chapter I find a lot less relatable:

    Autistic people have differences in the development of their anterior cingulate cortex,[14] a part of the brain that helps regulate attention, decision making, impulse control, and emotional processing. Throughout our brains, Autistic people have delayed and reduced development of Von Economo neurons (or VENs), brain cells that help with rapid, intuitive processing of complex situations.[15] Similarly, Autistic brains differ from allistic brains in how excitable our neurons are.[16] To put it in very simple terms, our neurons activate easily, and don’t discriminate as readily between a “nuisance variable” that our brains might wish to ignore (for example, a dripping faucet in another room) and a crucial piece of data that deserves a ton of our attention (for example, a loved one beginning to quietly cry in the other room). This means we can both be easily distracted by a small stimulus and miss a large meaningful one.

    I do get distracted by all the small stuff, but I don't usually miss the big picture or large stimulus.

    But since Autistic people do not process information intuitively, we don’t see “obvious” answers to things, and have to carefully break the question down instead.

    is actually not my experience at all, I do often see "obvious" answers for things but have a hard time explaining why that is or what million tiny clues led me there - I do get hunches. I do a ton of thinking and research, and then an answer appears in the back of my head, though I can't always tell you how it came out of all that.

    I remember reading something about ADHD kids often being good at math but not being able to explain why they know they answer, they just do, and I'm one of those. It's kinda that same principle applied to my whole life. Idk why I know, I just do.

    Maybe this will get explained more in the next chapter? I noticed when I was searching "intuit" to find these quotes, there were some hits from Chapter 2 that look to be in Highly Sensitive Person context, and if I understand the term correctly, that's me.

    • FourteenEyes [he/him]
      hexagon
      ·
      9 months ago

      Thanks for sharing. I relate to a lot of this as well. I also can't stand the thought of being mean to anyone and just sort of make myself smaller and smaller so nobody will hate me.

      Just want to say though that the DSA thing isn't your fault. It's not like socialism is a solitary activity. It was never on you in the first place to hold it all together.