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 i gave this a Favorite because it's so important. (i almost didn't because of the terribleness.) if you're okay with them, hugs.
People growing up before the 2000 were not screened for autism. It really depends of the country. Even in the western world, a lot of countries still struggle to identify autism if the kid has no intellectual impairment. For adults, it's worse.
Even the most innovative country don't know how to deal with autism. It would be funny if it wasn't a life treat. It's sad because people have to trick the system to get help and accomodations.
Yes, when you were born is pretty important. I was born in the mid 50s. If they'd discovered at that time that I was autistic, I would've been put into an asylum and never seen the light of day again.
Thank the Gods they missed me! I was finally diagnosed aged 63, about 5 years ago. After I retired!
So I lived most of my life, and all of my working life, not knowing, unable to work out why I was so very unlikeable.
@obrerx@allautistics@actuallyautistic My experience is similar to obrerx. I grew up in the 60’s knowing I was different from other children, but not how or why. I thought I was unlovable. My parents were of the spare the rod spoil the child mentality.
My mom said the only thing I was good at was cleaning and her aim was for me to work in Woolworths. I became a special educational needs teacher.
I was diagnosed in my 40’s after my children were.
I think the trauma we all experience to various degrees doesn't depend on when (or if) we're diagnosed, but rather if we have people around us who love and support us, no matter what.
Of course, a broader understanding of autism helps a lot. But I think it's more about the mindset of allistics: are they willing to see that their experience isn't universal?
@obrerx@allautistics@actuallyautistic
While I am blissfully unaware of the discussions that sparked this (and am happy to remain so), I can relate to your experience 💜
I was born in the 70s. Nobody here knew a lot about autism then. By the time my issues became unbearable in the 90s, I ended up in psychiatric care and was misdiagnosed for BPD.
On the surface I have had a successful life and career so far, but it's been though and getting tougher as I age.
@obrerx@allautistics@actuallyautistic
I've been wondering what would have been different had I been diagnosed as a kid. Would things have turned out better or worse?
Alas, in the end, the question is academic as I only have this one life and can only influence the future, not the past.
@marenf@obrerx@allautistics@actuallyautistic
I was born in the late 50s. Girls pretty much didn't get diagnosed as autistic then, & my dad, born in the 20s, was also never diagnosed. He was the only person who kinda understood me, or gave useful guidance. Died when I was 16.
It was a long hard struggle to figure out people, but I had a good career as a librarian. Diagnosed in my 60s, & it Made. So. Much. Sense. Of me, and my dad.
That sounds similar to my mother's case. She was born in the 1940s. There's no way she would have been diagnosed way back when. A life of depression and alcoholism did her in. ☹️
@yourautisticlife@marenf@obrerx@allautistics@actuallyautistic I'm so sorry! My dad was a recovering alcoholic--stopped drinking when I was 4. It continued to have repercussions in our lives. For him, though, it was the other addiction, cigarettes, that killed him. 💔
I'm familiar with the smoking issue too. I had a junior romantic partner who indulged. I got her some patches, and it helped to reduce her consumption, but she was not about to quit. ☹️
@yourautisticlife@marenf@obrerx@allautistics@actuallyautistic My dad was spending a lot of time in AA, when there were no "smoke-free" meetings. He tried hard to quit, but not drinking was seriously the higher priority, for him to be a functional husband & father.
This reminds me of my mom, autist too. She started smoking to mask and be with others as she always was the weird girl. Fast forward, after years of smoking she had cancer. Hopefully, the surgery and the chemotherapy went well. She now lives cancer free for some time.
It's a good example of the tax we are paying as autists to fit in. It's not just mental health.
Speaking of autistic dads... I remember getting taken to a psych, and after many visits where not much happened, my dad pulled me aside and told me, "I think this is a waste of money. I dont think there's anything wrong with you. The problem is your stepmum."
@marytzu@marenf@obrerx@allautistics@actuallyautistic
Oh, that's interesting! My mom was my mom, & my parents loved but often did not understand each other. And yes, my dad shared my perspective on who was normal & who had a problem that we just had to work with. 😉
She yelled at me on a daily basis; for doing chores wrong (but never teaching me how to do them properly), not doing chores at all (due to aforementioned, when I gave up), talking back, being a smart arse, yelled af me when I shutdown & ignored her too...
But to my dad, my behaviour was very understandable to him.
This led to (in retrospect) an interesting interplay with his male privilege & autism, and him using it to shield me, his daughter. A diagnosis probably wouldn't have helped me at the time, so it was probably for the best.
@liscarey@marenf@obrerx@allautistics@actuallyautistic what complicates my story is I'm gay... and I think this is a big reason why it took me so long to selfdx. For so long I thought the visits to psychologists and also school counsellors were them sniffing out my sexuality.
Which, if they succeeded, would have been an utter disaster given my family.
Looking back now, it was probably the autism they were picking up on.
@marytzu@marenf@obrerx@allautistics@actuallyautistic Yup. And although there were cases early that made it look like a medical triumph, there were a few very prominent doctors promoting lobotomy who were just straight up lying about its benefits.
@liscarey@marytzu@marenf@obrerx@allautistics@actuallyautistic I think my favorite (in the sense of “favorite example to illustrate how horrifying this was”) version of lobotomy — especially common in the US — is the version that basically involved shoving an ice pick through the thin bone behind the eye socket and wiggling it around to do the “operation”.
I recommend the read of the interview of Lovaass in Psychology Today 1974-01. It's horrific and a good illustration of where some still are. It's against any human right with shock and restrain all over the interview.
@marytzu@marenf@obrerx@allautistics@actuallyautistic My mother was not that...hostile?...but seriously did not understand a lot of what made me & my dad who we were. My sister is 10 yrs younger, & I was supposed to take care of her a lot, without anyone teaching me how to handle a toddler. And yup, I got yelled at a lot for being unsuccessful at it.
"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.
I am still unpacking some very weird shit that happened in my family of origin (highly educated, quite left politically, not the sort of people you’d outwardly guess). It’s clear in retrospect that they (particularly my mother) thought there was something very wrong with me, and back then (1980-ish) an #ActuallyAutistic diagnosis generally made things worse.
During a conflict that led to me being estranged from my family of origin, in 2010, my mother described how at first I was this perfect baby. Utterly perfect. (Weird words; by then I’d had one baby and step-parented, then adopted, a toddler, and they were and are both awesome people. But not “perfect”.) And then something malevolent attacked me, which, after a lot of time and work I eventually managed to “overcome” it (reality: a combination of masking and getting old enough to order my life in a useful way for my still very much #ActuallyAutistic self).
This struck me as very strange from the start, but I would later read about the “changeling” folklore that existed throughout much of Europe, and its likely connection to neurodivergent and especially autistic babies, and had honest-to-God chills for a bit. Feeling like I had somehow dodged a bullet.
I don’t know how common this sort of viewpoint was among parents who believed (possibly retrospectively, as a result of later childhood diagnosis) they’d had an autistic baby around that time, but that it happened at all, long after all that folklore passed into just plain lore, is extremely disturbing.
This makes me wonder. I definitely recognize autistic traits in the families of both my parents, and both of my parents are/were older siblings in larger families.
As autistic traits stated to show in myself and possibly my siblings, I could see them just seeing it as just the way some children develop, as they would have noticed a similar thing happen with their siblings, and not as something being "off".
And similarly were some of the coping strategies that were taught to me when I was younger (some healthier then other) the same ones taught to them and their siblings.
So can there be instances where the coping strategies that allow the autism to remain hidden (even from the autist) be passed down generation by generation alongside the autism?
Yes, my mother found me very annoying and irritating and she seemed to conclude I didn't like her. She had no idea... I worshiped the ground she walked on. I mean, I really respected her. She was smart. She explained the word to me very well.
But I reacted to her in strange, off-putting ways. She drew the wrong conclusions. And found me difficult to deal with.
@n69n@obrerx@allautistics@actuallyautistic oof. my mother told me once that she could tell when i was a baby that i didn’t love her. once i got past what an incredibly fucked up thing that is in every aspect, then i finally can go “oh okay, i know why she thought that now”
The things our parents say to us!! And often, autistic children will take such statements very literally and as an absolute. I was told by my father when I was 4 years old that I was from an unwanted pregnancy, that my mother did not favor me, etc.
Not a good idea to tell one's kids such things, but worse if the child is autistic, because we will accept it as utter fact. And it could very likely remain in our memories forever.
@c_reider@actuallyautistic@n69n@allautistics@obrerx
Yep - my father was similar.
To this day I still don't try to do anything I don't know how to do.
He always told me "If you can't do it right the first time, don't even bother" while he supported my older and younger brothers in everything.
@obrerx@n69n@allautistics@actuallyautistic yeah this is deeply relatable. from an early age I can remember my mom interpreting my echolalia as me mocking her (which if anything shows the kind of behavior she’d become accustomed to growing up nd).
me and my older sibling both had abnormal skills in the arts and humanities for our age, which she supported. but all the other symptoms (namely the ones with an attached stigma) she took personally or was hurt by.
@n69n@obrerx@allautistics@actuallyautistic I kind of relate to this except I was the "too good to be true" masked one and I wanted to be reassured all the time, that was me and my brother was the "bad" one. And the silly thing is it's very obvious now that my parents were autistic too but we all just quietly drove each other mad because seeking help was a sign of failure.
I was always told being sent "to the shrink" was the worst thing that could happen to you other than homosexuality 😔
@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.
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