Oddbean new post about | logout
 nostr:npub17vkc5qmq8ly9ggvqyacmwp8gaxg4pfdn3sqr5pygz6mhxtqgj3ksgu9n4k 
nostr:npub1mewd58tz390gcnw0ml99alkzzgcuj2yg9tdsjwt45zga54rtsj8qketau6 
#autism 
#autistic 

I'm gonna ramble a bit. I usually try to be coherent, and take my time, but I 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 poor self-esteem issues 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. 

That's my family life. 

This is part one. Part 2 follows.