I'm gonna ramble a bit. I usually try to be coherent, and take my time, but I just don't even know where I'm going here just yet.
There are assumptions I see in current Mastodon #autism discussions that are misleading or even wrong about so-called "late diagnosed".
One is that those who weren't screened as children must not be very autistic, and that these late diagnosed persons assume superiority and higher status, and then dominate spaces and talk over the early diagnosed.
Trying to get a sense of this, because I'm very late diagnosed. No doubt there is some validity to this point for some. I haven't seen it, but that doesn't mean it isn't there.
But I will say that some of these "takes" are very much like the toxic views of the "autism parents" on Twitter, who think adult autistics are all "high functioning" or not autistic at all, just people who are frauds and wannabes.
Having said that, being neurodivergent isn't new to me. I knew I was different in my early teens but saw myself as having a very different "consciousness" than others, rather than a different neurology (long story). And I was dx'd as ADHD 23 years ago, and self-diagnosed as autistic 8 years ago, and then received a formal diagnosis of ASD about 2 years ago. So is that "newly diagnosed"? Lol. I've lived the autistic life longer than most on the planet at this point. I'm hardly uneducated in the topic.
So I've known about my differences for a long, long time. ADHD is anything but "new" to me.
As to autism, I think it will always be "new" to me, and yet it will always be something I've lived with all of my life. And I've been alive for awhile.
Included either directly or by implication in some of the comments I've read is the pathologizing of autism, and separating the autistic community into severity levels, a concept that is clumsy and inaccurate, and often results in withholding assistance to those who are perceived as "mildly" autistic or underestimating and infantilizing those seen as "severe".
And it also misses the fact that people who grew up before 1980 (and especially before 1970 or 1960) would not likely be screened as autistic, and instead could be treated as a "terrible, strange, misbehaved child" with resulting parental neglect and abuse (raises hand), or misdiagnosed as any of a plethora of other conditions including schizophrenia (raises hand) or intellectual disability.
They might be hospitalized as needing in-patient psychiatric care (raises hand).
They might be terrorized by siblings (as in fearing for my life in repeated, prolonged, and constant attacks) and left to fend for themselves leading to lifelong trauma and all the self-esteem and others traits of PTSD and c-PTSD (raises hand).
Undiagnosed autistics can be treated with a high degree of neglect, misinterpretation, leading to severe estrangement from parents, and outright physical abuse by parents and siblings.
My mother was autistic (I'm quite certain). My brother was autistic (quite certain). My grandmother was institutionalized and I think that was autism.
But no one knew about autism when my grandmother and mother were born. My mother was delayed in speaking, potty training, tying shoelaces, delayed in learning to read. Because of her differences she was horribly abused by her aunt who raised her.
Oh but she was undiagnosed so she must not have been very autistic. Right?
She had no friends throughout her shortened life, although she managed to do well in college, and received a masters in family counseling from CalTech in her 40s. She spent most of her time reading, sitting in bed at night, when she wasn't teaching "educationally handicapped" children (that was the term in those days... so interesting that she chose that as her career).
She died by suicide when I was 26. I gave her CPR at 3 AM, and I'll never fucking forget those staring, dead eyes. Fuck, fuck, fuck.
@obrerx@allautistics@actuallyautistic Thank you so much for sharing and thank you so much for saying this! It's something I've seen too. There's a lateral ableism to it that really hurts.
"people who grew up before 1980 (and especially before 1970 or 1960) would not likely be screened as autistic, and instead could be treated as a "terrible, strange, misbehaved child" with resulting parental neglect and abuse (raises hand)"
This describes my situation as well. Every day, my mother would look at me with disgust and snarl, "There is something REALLY WRONG with you"... but not enough to seek help, not enough to interrupt cocktail hour.
My family still doesn't really believe that autism is "a thing".
I always wonder how they would have handled it if I'd had a visible disability.
This is written to the #autistic community, as well as to the non-autistics among us. My apologies if this offends, I'm just trying to be informative to anyone and everyone about this topic.
I'm just gonna say to everyone that the "actuallyautistic" tag initially strikes many #autistics as gatekeeping or exclusionary. This happens all the time.
There's no way for anyone to know intuitively or by inference that it is actually intended to protect and include all autistics, whether self-self-assessed, professionally assessed, and regardless of so-called "levels" of autism.
At first glance, I think most people would interpret the tag, which says the tag users are "actually" autistic, as claiming authenticity and distancing themselves from the self-diagnosed in our community.
This is why this discussion arises so often. It's confusing. I've seen this come up constantly on twitter in years past. And it comes up here on Mastodon, too.
Of course, the history is that the often abusive and misinformed parents of autistic children were aggressively and hostilely invading into online discussions (especially on Twitter) among and between autistics, disagreeing and talking over us, talking down to us, arguing over their insistence of "severity" levels of autism, telling us we weren't autistic, that we're not qualified to discuss autism, that we don't represent autism, that we're frauds, assuming all of us are just pretending to be autistic, that we don't know what it's really like to be autistic, and in various ways and forms invalidating us.
These often were full-on attacks upon our community on Twitter. Some of these "autism parents" or "autism moms" made this a daily affair, acting as if "parent activists" who are out to set the world straight with their presumably "correct" perspective on all things involving autism.
Often their views were shockingly ablest, invalidating, erasing our voices, forcing outdated and ignorant misconceptions upon us.
So the #actuallyautistic tag was created to declare autistic-initiated discussions to be just for autistics (including self-diagnosed). Allistics could ask questions by using the #AskingAutistics tag, or if they entered an #actuallyautistic discussion they were expected to be respectful of autistic viewpoints.
It's actually a good idea to describe this history often, not just for autistics, but for all the well-meaning non-autistics who want to communicate with us.
Because... to repeat, the tag comes off as gatekeeping. It sounds as if intended to gate-keep. Any reasonable person might take it that way. And it is gatekeeping in the sense of giving non-autistics a warning to respect autistic spaces and discussions. But it isn't to keep out self-identified autistics.
@obrerx@actuallyautistic@allautistics This has really cleared this up for me. I had no idea that some viewed it as a way to seperate professionally- diagnosed and self-diagnosed autistic people. Really glad you tooted this. I only knew it as a tag to seperate non -autistic voice from autiatic voice.