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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.
Part 2:
This is my childhood as an undiagnosed autistic:
I wouldn't let my mother touch me, I'd scream as an infant when she came near me, I'd have meltdowns (I remember being on the floor having these spasms and fits) when, for example, my father asked me to clean up when I was very small child. My mom became estranged from me. I was literally told she didn't favor me when I was four.
I would not interact AT ALL with other children in kindergarden, to the point my mother was told by the teacher that she (the teacher) had failed. She also said she completely failed to get me to interact at all with her, the teacher.
EDIT: Because of this estrangement from my mother, and my brother, she wanted to leave me behind in a boarding school for children when I was 9 years old, when we lived outside the US, and my family was preparing to go back to the states. I cried... and she looked at me and said: "I thought you wanted to stay here". As if she actually thought I was so strange and unresponsive that I didn't want to be with my family!
During all this time my older brother was terrorizing me on a nearly daily basis. He'd come at me, get me down on the floor, pound his fists with all his strength into my head, making me wonder why my brains didn't spill out. He was as if deranged with older sibling rage toward me.
I clearly have PTSD from this, and C-PTSD, low self-esteem, I react to aggression (such as aggressive, judgemental, invalidating treatment online). My entire life was derailed from all that happened.
When I was in my teens I was placed in a psychiatric facility for three weeks for "evaluation" and declared to have schizophrenic affective disorder, until a year or so later another elderly doctor of psychology said that was an error and not true, and withdrew that diagnosis.
This came after my father told everyone in my world (childhood kids, teachers, my yoga teacher as a teen, everyone I knew) that I was schizophrenic and to "not give me drugs" (I'd been taking LSD in large doses in my early teens). I was stigmatized, given anti-psychotic drugs, all for an incorrect diagnosis.
I was taken out of school for no reason and placed in an all-purpose "alternative" school.
Now, did my father go around to all the people he told, retracting that diagnosis? Of course not. It ruined my teen years, to the point I wanted to escape into a yogic cult to get away from my family. Yeah, that happened. I did that.
This story goes on and on.
Part 3:
Now tell me how different my life was from those who were "early diagnosed".
And how "superior" am I acting? I want to know, because I feel so beaten by the world I can't even fucking work right now.
It's autistic burnout according to some. For me it's just autism... because that world out there? It's too intense for me. Just generally too much to deal with.
@obrerx Know that what I am saying here comes from the heart and is sincere, even if it might be clumsy: You have my sympathy for how hard life for you were, and while you and I don't exactly interact much, I still value your input (even when you're not metaphorically bleeding all over the keyboard as in this case).
I was late diagnosed but I've always known I was different--expressing thoughts such as "I don't really think I'm an alien, but it would make sense". I suspect I'm the kind of person that "can't have been that autistic" (though I hope no one's ever thought I acted superior over it), because what I lacked in other skills I made up for in willingness to ignore my own boundaries and needs, and thinking my way around problems. I was "pushing through" towards an early grave, I've come to realise.
Thank you, I appreciate that.
I think the way autism manifests is very different for each of us, even depending on the phase of the human life cycle. In some it can seem invisible in one stage of life, but very different in another stage of life.
I'm sure that in some stages of my life (in my 30s?) only a person well versed in autistic traits would have seen it in me. In my early childhood it was quite evident, and if I were a child today I'd without doubt be screened as autistic by schools. In my teens, I would have as well, I think.
Now I'm older and it seems it's intensifying. This is what requires so much expertise in the psychology professions... all the different ways it can present in different stages of life, and in different people.
I'm theorizing that autistics may enter a different phase as they get older. At least for me this seems true.
Either that or I've been through too much trauma-triggering experiences in the last decade (and I have, except I have trouble letting this sink in, because that's part of c-PTSD in the sense of not thinking you deserve that kind of self-understanding - it's a form of self-gaslighting, telling myself it can't be that bad and I don't deserve this excuse).
But trauma and autism intensify each other. So there is that.
Regardless, I find myself shrinking from the world in an all too impacting way.
I realize that just learning of my autism has tended to allow me to understand how the world impacts me more intensely, and knowing this makes me accept it more and fight it less. I tend to not resort to rigidly forcing myself out into the world as much. There is less self-abuse and self-criticism, less pushing myself. This makes a difference too.
It's complicated.
@obrerx @PatternChaser Yeah, it makes sense that at some point things get ... different (and by different I kind-of mean worse, but also not entirely sure that's true). less ability to do some things, less energy to focus, and less tolerance.
I saw a youtube video talking about fibromyalgia and he described part of it as "the nervous system gets lowered capacity with chronic pain" (still not sure I believe him, especially the bit where he's insisting you can retrain the nervous system to get less pain, but the metaphor seemed relevant). Perhaps it's something like that--we get less capacity?
@melindrea @obrerx @PatternChaser I managed to get through 2 periods of trauma earlier in my life. I did burnout, “nervous breakdowns”, but was able to recover relatively well. Counselling both helped (useful strategies to reduce my rescuing tendencies & increase self kindness) & hindered (failed to recognise neurodiversity & attributed trauma to different causes.) But now in my 60s, I’m just exhausted. I don’t want to retire from the world around me, but the strain of the last few years (global events, not personal ones for a change), has taken a toll. I’m not judging myself harshly on this, but I want to live my life to the fullest, not hide in my safe & comfortable home forever. Conflicted.
Yes, this describes the changes well, as we get old... I'll be 70 in just over a year, and those changes are starting to become very noticeable, to me, if no-one else. 