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Adult Autism. Why don't we hear much about this?

ygolo

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http://www.jonathans-stories.com/non-fiction/invisible.html
Jonathan Mitchell is an adult with mild autism. He writes about his experiences above.

Why is it that we hear so little about autistic adults?

Is it because they've become indistinguishable from their peers?
Is it because we've given up on them, and don't believe we can help them further?
Is it because the adult problems, like lacking physical intimacy, are too uncomfortable to talk about?
Is it because they've gone from "cute little kids", to "creepy old people"?
Is it because years of trying to force them to conform have left us frustrated?
I'm being facetious of course, but I personally identified with his writing, and I wonder if some people don't actually feel this way about adult autistic behavior.
 

Lexicon

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This was a pretty interesting documentary about a [highly successful] severely autistic woman.
 

Viridian

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I'd say it's the first one. The autistic adults who don't fit under neat categories such as "completely dependent manchild" or "unemotional genius" don't garner much attention from the media.

Having read a bit about ableism, I could also suggest that a lot of media narratives concerning autistic people focus on "how hard it is" to be a caretaker for them, rather than their own voices and experiences. It's been observed that parents who kill their children are treated much more sypathetically when the children in question are autistic...
 

Ivy

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My husband is probably an adult with autism. He was not diagnosed as a child because in the 1970s the diagnostic criteria were so narrow that if you could speak and had near-normal intelligence (or higher than average as in his case and in many cases) you were assumed to be normal. He doesn't have an official diagnosis even now that the criteria have widened to most likely include him, because there's nothing to be gained in seeking one, at the age of 40, after a lifetime of having learned to recognize social cues by trial and error and rote memorization, and having built in his own social safety nets (like a wife who has, if anything, the opposite social problem- crippling self-consciousness). He was told by the team of psychiatrists at TEACCH who diagnosed our son (3 years old at the time), that he probably met the criteria himself. This was based on their observations of his manner, and the number of times they would ask about a behavior our son exhibited, and Noah would answer "Yes, he does that, but I did it when I was a kid, too." We were pretty floored when they brought it up, actually. They said he could come in for an assessment if it was important to him or if he thought it would be helpful in some way (e.g. to help explain unusual behavior to an employer). He decided not to pursue diagnosis at the time but we've gone forward with the knowledge that it probably applies to him.

I think Viridian is correct about the neat categories being an easier "sell" for stories about autistic adults. Besides, who wants to be part of a story about autistic adults if they are basically functioning, married, employed, etc? I can guarantee Noah wouldn't want to be reported on if the tenor of the report was "look at this brave autistic guy, overcoming obstacles! *weepy violins*"
 

Viridian

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My husband is probably an adult with autism. He was not diagnosed as a child because in the 1970s the diagnostic criteria were so narrow that if you could speak and had near-normal intelligence (or higher than average as in his case and in many cases) you were assumed to be normal. He doesn't have an official diagnosis even now that the criteria have widened to most likely include him, because there's nothing to be gained in seeking one, at the age of 40, after a lifetime of having learned to recognize social cues by trial and error and rote memorization, and having built in his own social safety nets (like a wife who has, if anything, the opposite social problem- crippling self-consciousness). He was told by the team of psychiatrists at TEACCH who diagnosed our son (3 years old at the time), that he probably met the criteria himself. This was based on their observations of his manner, and the number of times they would ask about a behavior our son exhibited, and Noah would answer "Yes, he does that, but I did it when I was a kid, too." We were pretty floored when they brought it up, actually. They said he could come in for an assessment if it was important to him or if he thought it would be helpful in some way (e.g. to help explain unusual behavior to an employer). He decided not to pursue diagnosis at the time but we've gone forward with the knowledge that it probably applies to him.

I think Viridian is correct about the neat categories being an easier "sell" for stories about autistic adults. Besides, who wants to be part of a story about autistic adults if they are basically functioning, married, employed, etc? I can guarantee Noah wouldn't want to be reported on if the tenor of the report was "look at this brave autistic guy, overcoming obstacles! *weepy violins*"

Thanks for sharing, Ivy! :)

Yeah, there's even a word for this, usually applied to people with disabilities: "inspiration porn".
 

Galena

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Having read a bit about ableism, I could also suggest that a lot of media narratives concerning autistic people focus on "how hard it is" to be a caretaker for them, rather than their own voices and experiences.
This is true for many, many mental/neurological conditions. One reason I have heard for not listening to an autistic person is that the very nature of autism is a cutting off from life's social fabric, so their insights about life and humanity cannot be true to interpersonal reality. To which I say, careful. Lack of self-awareness is one of the most powerful claims that can be made over a person, and too many people make it without thinking hard about that power first.
 

Viridian

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This is true for many, many mental/neurological conditions. One reason I have heard for not listening to an autistic person is that the very nature of autism is a cutting off from life's social fabric, so their insights about life and humanity cannot be true to interpersonal reality. To which I say, careful. Lack of self-awareness is one of the most powerful claims that can be made over a person, and too many people make it without thinking hard about that power first.

Like I've once heard: neurotypical privilege is not having to come up with examples of people of your neurotype who helped mankind in order to be treated like a human being worthy of respect. :/
 

nanook

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perhapz iz becuz adultz autists too smart to fucking mention theirs condition in front of fucking retardez neurotycialz like what the fuck matterz what da neurotypicalz thinks, as if they'd evar understanz something, juzt becuz u'd explain it to them a 1000sand timez. howevarz, if you fucking cares to hearz what tis fucking idiot haz to say, herez my take on it.

thank u, you are perfect, neurotypicalz or not, itz not like u had a choice or sumthingz, itz just who u arez, so enjoy da SELF.
 

cafe

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I think because the ones that are able to function independently mostly just want to be left alone to do their thing. They generally don't want to be thought of and don't think of themselves as being disabled, but rather that they are surrounded by irrational idiots. So they just go about their business the best they can like everybody else, doing well at some things and badly at others like everybody else, but in their own way. If they talk about autistic stuff, it's usually with other autistics or friends/family who make them feel accepted.

Those that can't function independently are considered beyond help and are no longer cute little kids, so they aren't appealing.
 

Entropic

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Ultimately, the real question you ought to ask yourself is, why would you actually focus on describing adults with autism as if they are in fact different from other people, especially if they are fully capable of managing on their own? By even suggesting the very idea itself you put them in the "other" category by definition and create an exclusiveness. Like [MENTION=2]Ivy[/MENTION] said, why would her husband care? He shouldn't. I mean, there are times when I personally wonder if I'm autistic (overlap with 5-ness), but meh, I function too, so why bother?
 

tinker683

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I was diagnosed as being autistic when I was 5 years old after being previous being diagnosed as being "profoundly deaf" at 3 years old (I was nonverbal and didn't respond to my parents at all so the doctors at the time told them I was deaf). The "deaf" diagnosis was overturned when I was 5 because I started responding to my parents and talking back to them. When I was 17, my psychiatrist who was treating me for Major Depression Disorder (an interesting time in my life that involved years of therapy and 2 tours in across three different mental hospitals because I was suicidal) diagnosed me as having Asperger's Syndrome.

Having read the article, I do have the following to say...

I never went to any sort of therapy for my autism. Originally the doctors wanted to send me to a special education school but my parents refused and insisted on sending me to regular school. I never underwent ABA or anything like that. I was quite literally thrown into the deep end of the pool and told to swim. My early childhood was largely isolated and all the way through high school I was frequently the target of bullies. That being said, I did well in school academically and I did have a small handful of friends throughout the years so my existence was not nearly so bleak as the authors. I consider the loss of my viginity to be a wonderful accident and a product of the modern age. I lost my virginity to my ENFJ who I met on the Internet. She lived in Winnipeg Manitoba and I lived in NE Florida. If I had been born a decade sooner, I'm not sure how things would have turned out.

As an adult with Aspergers, I find I largely fit in but only because I've learned how to navigate my way around. People generally find me politely and somewhat affable, and thats the persona I try very hard to project. In truth I find a lot of people to be a deeply fascinating if chaotic mess and I often find myself getting lost in watching groups of people and/or individuals and watching how they act around other people.

I've managed to maintain good relations with some people but at the present point in time I wouldn't say I really have any friends, just acquaintances. These people seem to enjoy my time and I enjoy but thats about where it ends. My ENFJ-ex and I still call and text each other a lot but by and large I'm generally left alone and most of the time I have no issue with this. It does get very lonely sometimes and I don't know how to properly reach out to people without coming off as needy or clingy when I'm going through they dry spells. As such, I tend to spend my leisure time losing myself in books, movies, or video games and I can become so immersed in them that they start feeling like the real world and reality can seem like a dream....but only sometimes. Most of the time I just suffer a bit of disorientation but I'm otherwise OK.

Girlfriends and my intimate relationships are few and far between. I think I have a lot of positive qualities for a person and I feel I have a lot to offer to a potential mate, I've just yet to find one who is looking for someone like me. While at the present point in time I have voluntarily chosen to stay alone as I haven't finish processing emotionally my last breakup some months ago, I am optimistic about my future. I've noticed in the women around me that the older they get, the more they value consistency and reliability in their mates and I feel I might start to appeal more to women the older I get. I'm the co-owner of a real estate business that is prospering and I receive a steady income. I have no bad habits, I like to go dancing (and in fact have been told I am an excellent ballroom dancer), and I'm willing to try anything once although I may not be the one to take the initiative to go out and do stuff: I'm happy in my little shell and while I don't mind stepping outside of it, I dont't really feel the need to go outside of it just for the sake of doing it. My greatest flaw I would say is expressing myself emotionally: I either over do it or barely do it at all. I'm still a Feeler though, so I'm properly a little bit ahead of the curb in that respect ;)

As such, I think I might appeal who is looking for a quiet, dependable helpmate, whomever that may be.

I wouldn't say I feel any need to go out of my way and label myself as being different some everyone else but I have found that telling friends/girlfriends about my Aspergers to be helpful as it helps them to understand some of my behaviors (that I take things so literally, that I can be very blunt and straight to the point when discussing something). I don't consider what I have to be a disability, just a quirk.
 

ygolo

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perhapz iz becuz adultz autists too smart to fucking mention theirs condition in front of fucking retardez neurotycialz like what the fuck matterz what da neurotypicalz thinks, as if they'd evar understanz something, juzt becuz u'd explain it to them a 1000sand timez. howevarz, if you fucking cares to hearz what tis fucking idiot haz to say, herez my take on it.

thank u, you are perfect, neurotypicalz or not, itz not like u had a choice or sumthingz, itz just who u arez, so enjoy da SELF.

People used to say that I needed to get "people skills". I would often respond by saying I didn't meet many people with people skills, just those with "people-like-me" skills who were fortunate enough to have people like them around.
 

ygolo

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I am glad that some people are funtioning well, but I find it sad that we give up on the others...who like the man mentioned in the first post, wants some targeted help, but cannot really get it since he is an adult. This is a little funny too, because we force children into it, but do not allow adults who want help to get it.

Is this because adults aren't looking for a "cure", but just some ways to manage practical problems?
 

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What do you mean we "force children into it"?

Available resources for people with autism vary widely by region. Here, TEACCH, the department that diagnosed my son, would have been glad to assess my husband as well, if he wanted the help. And if he had been formally diagnosed they have services for adults with autism including employment training, support groups, social skills groups, etc. I wish this were available everywhere, but good services for children with autism are not universally available, either. Funding for education in general is being slashed and special education is already underfunded.
 

cafe

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Parents generally make those kinds of decisions for their children. I've been to enough IEP meetings to know that I'm allowed to refuse services on behalf of my child. And I would give a kidney for truly helpful services. Most of the staff I've dealt with either doesn't have a clue about autism or does not have access to necessary resources. By middle school the best we were being offered were special ed classes for slow learners even though everyone acknowledged that my son is in no way a slow learner.
 

FDG

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I think more broadly speaking adults don't really receive help (except from their immediate family) for their problems, or at least are mostly either not expected to have any or to get by with what they have. It's unfortunately not a problem limited to mild autism.
 

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People used to say that I needed to get "people skills". I would often respond by saying I didn't meet many people with people skills, just those with "people-like-me" skills who were fortunate enough to have people like them around.

Very well said.
 

ygolo

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What do you mean we "force children into it"?

Available resources for people with autism vary widely by region. Here, TEACCH, the department that diagnosed my son, would have been glad to assess my husband as well, if he wanted the help. And if he had been formally diagnosed they have services for adults with autism including employment training, support groups, social skills groups, etc. I wish this were available everywhere, but good services for children with autism are not universally available, either. Funding for education in general is being slashed and special education is already underfunded.

Force is perhaps a strong word. But we generally don't allow children to chose these sorts of things. Similarly to a situation with a deaf child and getting implants.

It is good to know help was available. But is it typical? I mean for other things we deem to be a problem, like adult ADD and bipolar disorder, it seems like the dichotomy of resources available for children vs. adults doesn't seem as sharp.

For instance, even in your region, if someone were to seek either a test or treatment for adult autism, where would they go? Around here, the support groups, insurance covered access is quite different for something like adult ADD or adult bipolar, as compared with an adult seeking help with what (s)he believes might be an autism spectrum issue.

Parents generally make those kinds of decisions for their children. I've been to enough IEP meetings to know that I'm allowed to refuse services on behalf of my child. And I would give a kidney for truly helpful services. Most of the staff I've dealt with either doesn't have a clue about autism or does not have access to necessary resources. By middle school the best we were being offered were special ed classes for slow learners even though everyone acknowledged that my son is in no way a slow learner.

I am sure you know quite a bit about this, but I find your story to be typical of what I found digging around here.

I think more broadly speaking adults don't really receive help (except from their immediate family) for their problems, or at least are mostly either not expected to have any or to get by with what they have. It's unfortunately not a problem limited to mild autism.

Perhaps not, but I am pretty sure with many things deemed medical/neurological conditions, help seems to be be more easily accessible as an adult than with autism (e.g. bipolar disorder...not that it is entirely easy in that sense either). I actually wonder if this doesn't lead to treating the wrong issues with adults.
 

Little_Sticks

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What's the view on autism now?

Last I checked mainstream psychology seemed to agree that it's a disability, something undesirable and horrid, and something that must be cured or done away with in some manner. There seems to be this inherent "expectation" that one "should" be "normal", instead of an appreciation for neuro-diversity.

The autistic must make accommodations for the neurotypical, but the neurotypical doesn't have to do shit; sounds unhealthy for autistics, adapted or not. An autistic with self-esteem wouldn't want such help, even if they were struggling. I then don't see much good for an autistic getting labeled other than to meet other autistics and find someone to relate to...but there's many places to find such people that don't require a stigmatizing label...
 

Coriolis

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Last I checked mainstream psychology seemed to agree that it's a disability, something undesirable and horrid, and something that must be cured or done away with in some manner. There seems to be this inherent "expectation" that one "should" be "normal", instead of an appreciation for neuro-diversity.

The autistic must make accommodations for the neurotypical, but the neurotypical doesn't have to do shit; sounds unhealthy for autistics, adapted or not. An autistic with self-esteem wouldn't want such help, even if they were struggling. I then don't see much good for an autistic getting labeled other than to meet other autistics and find someone to relate to...but there's many places to find such people that don't require a stigmatizing label...
Yes, people seem well able to meet like-minded or similarly interested folks without need of a clinical diagnosis. Just look at all the support, religious, cultural, hobbyist, and sports groups out there. The mainstream already makes accommodations for various "non-mainstream" groups, often at considerable expense. Consider all the accessibility features mandated by the ADA, or even the 10% of desks most lecture halls have on the opposite side for lefties. Accommodation of people on the Autism spectrum should be even more straightforward, since it requires no changes to basic infrastructure, but more just with people's attitudes.

There is some interesting discussion in this thread about the degree to which autism (and other "disorders") are really just atypical traits that don't necessarily impair one's functioning or require correcton. This can be seen in the association of autism with certain MBTI types. These types have preferences, motivations, and resulting behavior that differ from the mainstream. At some point on the continuum, the difference can be significant enough to affect daily functioning, at which point I suppose it requires some intervention. Perhaps that is the dividing line between a difference and a disorder.
 
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