There's a lot I agree with here, but also some things I don't quite agree with and are touching upon some particular pain points for me. First of all, I'm glad someone else is finally noticing the overwhelming supply of white ladies in our feeds when it comes to autism on mainstream social media platforms. As someone who is both Black and trans masc, I'm often acutely feeling multiple levels of erasure here.
Just a few days ago, I came across yet another article about being pregnant and autistic and asked myself whether I could push myself to compartmentalize the profound gendering and whitewashing of pregnancy talk that was likely to happen (and it did) in order to possibly get information that might apply to my experience should I decide to use my uterus to carry a child one day.
I'm also glad that someone is calling out how so many autistic-led initiatives, whether by influencers or self-advocate-run organizations talk a nice talk, but very seldom DO. One thing we could learn from organizations like Autism Speaks is that while we frequently might not like what they're trying to do, they sure do get it done or get society a lot closer to doing it than before. They have effective organizing and PR strategies to push their agenda that we often lack and seem a lot more willing to metaphorically speaking, do the less sexy dirty work involved in it all. I can list concrete things they and other organizations like them do/have done, even if I don't like a lot of them. I have been wanting to serve the cause of making the world better for autistic people in some way by finding like-minded fellow autistics but have been at a loss as to where to even begin sifting through all of the baloney out there.
The biggest achilles heel for myself that this all reminded me of is that I can't seem to figure out where to fit within the autism landscape. I'm "too weird" for NTs and have been ostracized by quite a few of them in my life, yet, when it comes to the autism community, it often feels like I'm "not disabled enough" to be able to speak up without backlash or find appropriate assistance for my situation and it reminds me a lot of what I went through as someone perceived as a "gifted" (a whole other white supremacist can of worms) kid in school growing up.
As an undiagnosed kid, particularly in K-12 in the US during the heart of NCLB, the message I constantly received is that I was "too smart" for my needs and growth as a person to be important and that I needed to take up less space/sacrifice my aspirations and goals for the sake of the group (i.e. my classmates).
Finishing something early or already knowing material years in advance meant managing the behavior of and tutoring classmates who were struggling and sometimes even being asked to run entire classes alone, grade classmates' work, come early and on weekends to tutor, and create exam materials for the school, all unpaid. Any attempt at speaking up getting my educational needs met, whether by me, my parents, or teachers who wanted to help was quickly shut down by the higher ups, because others "needed more help" and I was "lower priority". I was seen as "arrogant", "unempathetic", "spoiled", and "entitled". My parents fought tooth and nail to get me to skip grades and have independent study opportunities.
Once I got my autism diagnosis, all of this pain came roaring back, except now, I'm no longer "too smart", but "too high-functioning" or "too low support needs"(whatever term you fancy I guess). I'm constantly getting the message that by daring to speak about what I go through that I'm "stealing resources" or "silencing higher support needs", yet at the same time, have to keep reminding healthcare facilities that claim to be experts in autism that I'm unconserved and sign my own papers. When I was in a state-sponsored social skills group, the folks running it, again treated me more like a TA than a client, so much so in-fact, that I even listed it as a volunteer experience on my resume, and spent months reminding me that every other person in the group took precedence over me, reopening old wounds. I even did an almost year-long experiment impersonating my mom in an online autism parenting forum (with her permission and keeping her personal info anonymous) and at some point, worried for my mental health, because almost anytime I talked about my upbringing or current concerns my parents had about me, it was called “triggering” and “braggadocious” and I was swiftly reminded that people like me are “the reason” so many kids diagnosed Level 3 languish on waitlists all over the world, and eventually banned for defending myself.
A therapist of mine had to fight hard to make the case for me to qualify for state-funded services, because guess what? They don't like to give those out to level 1s. It has been an immense challenge finding service providers that are willing to listen to the struggles of an autistic grad student who aims to be self-employed. Employment supports scoff at the fact that I'd rather be a CEO one day than stocking some CEO's shelves at a place like Walmart or Costco. Getting diagnosed took so long in part because I didn't have the developmental delays so many first-line professionals are looking for. But yet, so many folks want to get into these dick measuring contests and oppression olympics where they think I'm stealing their thunder. Where was this silencing of high-support needs in the situations I just described? A lot of this can feel like the classic "eat your veggies because of starving kids in Africa" line some of us got fed.
Don't get me wrong, I think all of us have been wronged some way or another by the institutions and online climates we've dealt with and I think we've both picked up on the fact that these big platforms seem to be trying to paint a very specific picture for us at the expense of a lot of things, but I think the true picture is a lot more complex, situational, and nuanced than most people are making it out to be.
