Autism's Lost Generation
December 10, 2015 4:54 PM   Subscribe

Some autistic adults have spent much of their lives with the wrong diagnosis, consigned to psychiatric institutions or drugged for disorders they never had. Last year, Scott Hartman moved into his own apartment for the first time. He quickly learned to balance his budget, squirreling away money to buy a Blu-ray player or Xbox games. He started taking long walks to his favorite fast-food joints: Hardee’s, Papa John’s, Chick-fil-A, Taco Bell. To get to the science museum or the library, his other favorite destinations, he is learning the intricacies of public transportation. Scott can enjoy these simple pleasures because two years ago he was finally diagnosed with autism. He was 55.
posted by Blasdelb (17 comments total) 54 users marked this as a favorite
In response to Mandell’s re-diagnosis, the doctors at the institution lowered the dosage of many of B.P.’s medications. A few months later, B.P. was accidentally locked out of a common room. He turned to an orderly and, addressing him by name, said, “I am very angry.” It was the first thing he had said in decades.
Holy shit. These feel a bit like wrongful conviction stories.
posted by ignignokt at 5:48 PM on December 10, 2015 [32 favorites]

so I rilly, rly want to read this right now, but I'm on public transportation and I'm afraid it may make me cry. is this article gonna make me cry?
posted by You Can't Tip a Buick at 5:55 PM on December 10, 2015 [2 favorites]

It didn't make me cry (and I cry at everything) but I am autistic and have been through a lot of the stuff described in the article, so maybe that makes a difference.
posted by thetortoise at 6:15 PM on December 10, 2015 [14 favorites]

It didn't make me cry, but it might make you want to punch something.
posted by ArbitraryAndCapricious at 6:26 PM on December 10, 2015 [10 favorites]

It seems like maybe there could be a moratorium on the "that med didn't work? let's add ten more!" approach to psychiatry. Because it doesn't seem to be helping much.

This story was so so so so so sad and awful.
posted by mittens at 7:02 PM on December 10, 2015 [10 favorites]

I am still trying to articulate my thoughts on this, and this probably won't be my last comment, but I'll try to jumble them out--

I am in my 30s and so much of this is familiar to me that the thought of it being compounded with many more decades, bad diagnoses, institutionalizations and injuries is terrifying. Accumulating diagnoses and medications and not being sure if any are right. Going off the medications and running into more problems. Feeling angry and sad and seeing doctors who can medicate the sadness into oblivion but never the root cause, which is often feeling misunderstood, feeling like a freak, being bullied and abused without the means to explain it to the people who could do something, not being able to get my brain to do the "normal" things. Being told I was smart as a child after rounds of trying to figure out why I was so weird and that being used as another tool-- "you're supposed to be a genius, so why don't you have any common sense?" Being verbal enough to use the big words but feeling like there is this glass wall between me and the world when I try to communicate. "I am very angry." Yes, those are the words that would be in my head too.

My father very likely has Asperger's and has stayed out of the psychiatric system his whole life and spent years self-medicating his depression. Is that better? My grandmother too, and right now she's in a nursing home, her vision deteriorated too much to read the books that have been a lifeline her whole life. I look at her and want to feel sad for her but beneath the feeling is self-pity: if I lose my partner, if I get old with no connection to others, what will happen to me? Will anyone listen when I couldn't count on them to listen when I was 10 either?

Sorry, this is too personal and messy, but it's what I felt reading. Thanks for posting it.
posted by thetortoise at 7:34 PM on December 10, 2015 [67 favorites]

At least some of the "misdiagnosis" is built into an inertia stemming from the funding systems for care. In California, where I am most familier with, funding for community resources for psychiatric, non-autistic individuals comes from one bucket. Funding for people diagnosed with autism comes from another bucket. The size of the buckets, restrictions on how the money can be spent, and political will for expanding the buckets differs greatly. There are age range cut-offs for funding the care of adults disabled with autism, in that unless their diagnosis was made early and they were "linked" to a regional center, it can become surprisingly difficult to transition them from non-autistic psychiatric community and residential care to autistic community and residential care. This affects greatly their linkage with case managers, vocational and housing resources, supplementary income supports, and access to emergency care and triage.

I've been faced with cases where changing someone's diagnosis or etiology for impairment from primarily "psychiatric" to primarily "autistic", or vice versa, could cut them off completely from months, years, or decades of familiar case management, community, vocational and living resources, etc. And what may be beneficial within one county may sub-optimal in another. It can get very complicated.
posted by meehawl at 10:44 PM on December 10, 2015 [6 favorites]

When I was a teenager, I worked on a community farm which had volunteers from a nearby home for the mentally disabled. One of the volunteers was quite an old man, in his early 80s. The coordinator from the home told me that he wasn't slow or disabled in the least, but because he was deaf he had been diagnosed as retarded as a child and had grown up in homes as a result after his parents institutionalised him. They said that 10 years earlier they had discovered the mistake, but by that point he no longer wanted to leave the only place he knew as home. I thought about him while I read this article, and about the problem with science and authority. And why people distrust medical truths.
posted by frumiousb at 11:38 PM on December 10, 2015 [21 favorites]

Around 15 years ago I was diagnosed as being manic-depressive. I was prescribed all the drugs, had years of nasty side-effects and had a short spell in an psychiatric unit. I had several psychiatrists and the diagnosis never changed. Nothing helped though yet I was consistently told that my meds would make me 'better'. One day I questioned the psych and he mentioned in passing something about an emotional disorder. I didn't pick up on that at the time. A few psychiatrists later and I said very bluntly "Why do you think I am bipolar?" and the psych opened my notes, flicked through them and said "Because I have read all your notes". He was adamant and as he himself is bipolar it was one of his pet ponies. He told me to go read the forum at a bipolar website he is involved in.
I did.
And nothing made any sense at all. I was not like that, it just didn't fit with me. None of it. So I then went to Crazyboards, started at the top and read many posts on every forum. I was quick to realise many people there were not like me and then I found a forum where everything fell into place. Every post made sense. Every person I could relate to. This was me.
With my wife's support I requested and paid for a full copy of my medical records. A Community Nurse said around 15 years ago that I was NOT manic depressive. A very junior doctor had written "?manic-depression?" and that was all anyone then saw. I made a formal complaint to the National Health Service (I'm in the UK) and went to my next psych appt. Again I asked why he thought I was bipolar, I told him about reading crazyboards, that I felt I was not bipolar and again he flicked through my notes saying I was bipolar, that you shouldn't believe in forums, that he was an expert. I asked on other forums and was clearly told that even if I wasn't bipolar the new diagnosis would be the kiss of death as it was untreatable. But I wasn't bipolar. It was wrong to say that.
Two years ago I self-referred to a different psych unit. It was there I got the actual diagnosis - I have a Borderline Personality Disorder.

The feeling of relief was amazing. I still had the same psych so went back to him. He told me that he'd reviewed my notes and I was not bipolar.... and then he said "I don't do borderlines". The diagnosis means I can't get counselling but the diagnosis meant I knew I could help me, that I didn't need all those drugs.

I have a new psych now (the other one left to move to a different county) and although my disorder is stigmatising (and I chose to tell about 6 close friends only) I am much much better for knowing what is it. I'm 50.
posted by episodic at 1:14 AM on December 11, 2015 [21 favorites]

My mom has worked with autistic kids for 35 years. She works with little kids mostly, 2-5 years old. She started working with one boy about 24 years ago, whose parents called her because all of the doctors were saying they should put their little boy in an institution, that he was a hopeless case and he would never talk or be a part of society in any way. And because his parents were both stubborn and powerful, they went looking for other options and so they heard about my mom. She worked with that little boy 3 times a week for several years, and then once a week until he was 18.

It turns out he wasn't a hopeless case: he's now 26 years old and he works in the back room of a local post office (he's super good at sorting mail) and he lives in his own apartment in a non-group home. He started out in a shared living facility, and they recently decided that he'd be okay in an apartment where the supervisor knew him and could help in an emergency. He takes the bus to work every day without problems and he seems pretty content with his life. He calls our house occasionally and you can tell it's him because there's always a slight pause after you say hello and before he says, "I would like to speak to Betsy [my mom] please."

It makes me sad to think about all of the people like him who could have thrived, given the right circumstances, but who were instead locked away for 50 years.
posted by colfax at 4:54 AM on December 11, 2015 [15 favorites]

The diagnosis means I can't get counselling but the diagnosis meant I knew I could help me, that I didn't need all those drugs.

!!!!! You can't get counseling??? I'm so sorry. Here in the U.S. the modality of choice for BPD is Dialectical Behavior Therapy, and you might find some help and relief even doing self-study.
posted by listen, lady at 5:57 AM on December 11, 2015 [1 favorite]

Here in the U.S. the modality of choice for BPD is Dialectical Behavior Therapy

Yeah, it's on the list of recommended treatments in the UK too.

Since episodic mentions seeing a new psychologist or psychiatrist now, I think they meant they couldn't get counselling specifically from the previous (terrible) doctor who said 'I don't do borderlines'?
posted by jack_mo at 9:00 AM on December 11, 2015

@listen, lady / jack_mo - there is no provision in my county for DBT. The one unit that provided it was closed some time ago. I've looked and looked but it's just not there. I haven't asked the new psych directly yet - I will do when I see her in January.
posted by episodic at 9:28 AM on December 11, 2015 [1 favorite]

qcubed, by "does this happen" do you mean having an emotional reaction, or not having one?

For me, this article didn't provoke a strong emotional reaction, probably because — as a 45-year-old who only realized "holy shit, I'm almost certainly autistic? That explains so much" a few months ago — I was already aware of the problem. (Reading Neurotribes almost had me weeping in public because I felt like there were mirrors pasted on every other page. "That's me... that's me... that's Dad... that's me...")
posted by Lexica at 4:23 PM on December 11, 2015 [2 favorites]

I haven't even managed to try Neurotribes yet. I made it halfway through Tony Attwood's book and had to send it back to the library.

My reaction to the article itself was kind of complicated because it brought back a lot of memories. The women in my family were often nurses; my mom worked in a sort of lower-class-but-genteel nursing home, my grandma worked in an institution that was mostly for intellectually disabled people, mostly kids.

If you visited my mom at work, there were these little old ladies being pampered in their final years, sitting in their little rooms pigging out on ice cream and cheap champagne, and everyone was happy to see you if you were a little kid.

If you visited my grandma at work, it was like a scary dungeon. You didn't know where to look, you didn't know what to do. There was this horrifying brisk efficiency to everything.

So the idea of being locked away somewhere is bad enough, but to be locked away, drugged into submission, and be around people who don't understand maps out on that horror of the dungeon.

I don't know the forced institutionalization part, but I do know the drugged into submission part, and it's pretty bad. To go on so many psych meds you start having other side effects so other meds get added, and you're like this fat twitchy mess that wants nothing more than to sleep, and you're making no progress (whatever progress is supposed to look like), and nobody asks whether maybe the initial diagnosis is wrong, or at least maybe the treatment is wrong, but only if the treatment isn't enough, if maybe more is needed. And then all your neurons burn out and you're a husk and you can't feel much of anything anymore.

Um, all of which was eventually to get around to say, to qcubed's point, that a lot of times I am not even sure when an emotional reaction is happening, so much as a kind of memory resonance. Like analogies have replaced emotions.
posted by mittens at 4:49 PM on December 11, 2015 [2 favorites]

I'm having emotional reactions because this hits close to home for me, too, although perhaps not the same emotions as everyone else. My brother struggled with mental health issues from childhood on. I'm not sure what his initial diagnoses in grade school/middle school were--this would have been DSM II/III era, probably some sort of behavioral/adjustment disorder. In high school the behavior problems amped way up, he wound up spending 10-12th grade in a residential treatment center, and the label "schizophrenic" started to get tossed around. I can see how that could have been the case, as he did have definite psychotic episodes, with auditory hallucinations and detaching from reality for brief lapses. It wasn't until he was in his 30s that he was diagnosed with autism, and that involved going beyond local resources to a specialized diagnostic clinic in a major city.

But I guess one of the reactions I'm having to this piece is that for my brother, at least, the diagnosis of autism didn't really change a whole heck of a lot in the 15 or so years since it was handed down, and it's unlikely that things would have played out that much differently 40 years ago when he was still a kid, when special ed and child psychiatry and all that was still not that well developed. The idea of a "lost generation" implies that if only one had known that someone was autistic, whatever was "lost" during the period of misdiagnosis would have been "found," but there's just not been much "finding" in my brother's case. The diagnosis did not make him a different person at all, although it made it a little easier to be sympathetic toward his...different way of being in the world, let's say. The diagnosis didn't make him any more functional or skilled of independent living, such as learning to balance his budget, keep his apartment clean, take care of his own health, or pay enough attention to bus schedules or clocks so that he doesn't get stranded at the movie theater or run out of food. The diagnosis came down in the middle of a 15-year period he spent living in a group home, and it took all those additional years for him to get it together enough to be kinda sorta ready for independent living (after basically failing at independent living during the decade of his 20s).

It's all coming to a head right now because my parents were always there to help him out, and now my dad has been gone for a while now and my mom's developed her own health problems that mean she can no longer offer him any assistance.

My other emotion is worrying that he may be developing Parkinson's? Shit. He has a gait disorder and speech disorder that's been developing/progressing for at least a decade and as far as I know he's not sought a diagnosis for it, although I've been encouraging him to bringing it up with his psychiatrist (I'm not sure if he sees a regular doctor, it's kind of hard to have conversations with him about this stuff over the phone, cf. autism + speech disorder).
posted by drlith at 6:50 PM on December 11, 2015 [3 favorites]

I just want to say that the articles regarding autism, particularly those specific to women on the spectrum, that have been posted here over the past few months have changed my life and my mental health dramatically, so thank you. It's taken a while to finally diagnose my autism spectrum disorder (I'm 32 and it took being partially institutionalized for a suicide attempt and intense therapy to get there) and since then I've reconnected with my family and I seem to be close to thriving again (whereas I had a period, due to a shitty job, where my pervasive and debilitating autistic traits spiraled out of control due to a bad work and home environment). I think I am also starting to help a lot of friends who were also "missed" by the mental health system and the school system and are still struggling into adulthood.

I think a lot of what I am feeling now is anger towards a system, and in my case a family, that didn't protect me or my brothers (who are also on the spectrum) and a deep mourning of self. As a result of our neurological disorder we've suffered from neglect and abuse all of our lives, and, despite being above average in intelligence and very "savantish" our potential has basically fallen by the wayside due to secondary mental illnesses...especially depression, anxiety, and now complex PTSD. I fared a bit better, being on the very high functioning end and having succeeded in college and grad school and always having a job of some sort (and, honestly? Being a woman who was forced to develop scripts to fit in), but none of the abuse, loneliness, etc. seems to end or even improve until you have the protective shield of a diagnosis, the self awareness that comes with it, and a good medical and social support system to protect you. Those last elements are SO IMPORTANT, otherwise you drift through life trying to figure out WHY you're struggling, blaming yourself for your social failures, and eventually succumbing to mental health issues and a dramatically reduced quality of life.

Reading this makes me sad and angry just as my own past does, but on the other hand, realizing that our understanding and advancement and resources for people with autism spectrum disorders, at the hands of VERY DEVOTED scientists and specialists and activists and even sufferers themselves, are dramatically improving I am very hopeful that in the future this won't have to happen.
posted by Young Kullervo at 7:16 AM on December 12, 2015 [9 favorites]

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