Autistic Adults Hidden in Plain Sight, 1% -- LA Times

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Apple_in_my_Eye
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16 Dec 2011, 6:42 pm

An LA Times Article --> Autism hidden in plain sight

http://www.latimes.com/news/local/autis ... .htmlstory

Ai Ling had a thread (which I can't find, now) about some very high unemployment figures for autistics. Someone in the thread basically said, "for diagnosed autistics, yeah." In this article a researcher says they're finding about a 1% incidence amongst adults (who were not diagnosed previously). So, there are (and have always been) a lot of adult autistics who are out in the world who are not currently included in official statistics.
Some seem to be doing ok, though most in the article sound like they're just scraping by.

The article is a lot easier to read on the website, BTW.

Quote:
Alan Zarembo, Los Angeles Times

December 16, 2011

When autism researchers arrived at Norristown State Hospital near Philadelphia a few years ago, they found a 63-year-old man who rambled on about Elvis Presley, compulsively rocked in his chair and patted the corridor walls.

Ben Perrick, a resident of the psychiatric institution for most of his life, displayed what the University of Pennsylvania researchers considered classic symptoms of autism. His chart, however, said he was schizophrenic and mentally ret*d.

Delving into the file, the researchers learned that as a 10-year-old, Perrick had seen Dr. Leo Kanner, the psychiatrist who discovered autism. In his notes from 1954, Kanner described Perrick as “a child who is self centered, withdrawn, and unable to relate to other people,” and recommended that he be committed.

Later, other doctors relabeled Perrick. The autism diagnosis was forgotten.

The researchers found 13 other patients with unrecognized autism in the Norristown hospital — about 10% of the residents they evaluated. It was a sign of how medical standards and social attitudes toward the disorder have shifted.

Over the last two decades, estimates of the autism rate in U.S. children have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.

Scientists are just beginning to find cases that were overlooked or called something else in an earlier era. If their research shows that autism has always been present at roughly the same rate as today, it could ease worries that an epidemic is on the loose.

By looking into the past, scientists also hope to deepen their understanding of how autism unfolds over a lifetime.

What happened to all the people who never got diagnosed? Where are they?

Like Perrick, who died in 2009, some spent their lives in institutions. Mental hospitals have largely been emptied over the last four decades, but the remaining population probably includes about 5,000 people with undiagnosed autism, said David Mandell, a psychiatric epidemiologist who led the Norristown study.

Many more are thought to be in prisons, homeless shelters and wherever else social misfits are clustered.

But evidence suggests the vast majority are not segregated from society — they are hiding in plain sight. Most will probably never be identified, but a picture of their lives is starting to emerge from those who have been.

They live in households, sometimes alone, sometimes with the support of their parents, sometimes even with spouses. Many were bullied as children and still struggle to connect with others. Some managed to find jobs that fit their strengths and partners who understand them.

If modern estimates of autism rates apply to past generations, about 2 million U.S. adults have various forms of it — and society has long absorbed the emotional and financial toll, mostly without realizing it.

The search for the missing millions is just beginning.

The only study to look for autistic adults in a national population was conducted in Britain and published in 2009. Investigators interviewed 7,461 adults selected as a representative sample of the country and conducted 618 intensive evaluations.

The conclusion: 1% of people living in British households had some form of autism, roughly the same rate that the U.S. Centers for Disease Control and Prevention estimates for children in America today.

The British study found it didn't matter whether the adults were in their 20s or their 80s. The rate of autism was the same for both groups.

“That would seem to imply the incidence has not changed very much,” said Dr. Terry Brugha, a professor of psychiatry at the University of Leicester who led the study. He added that the findings were not conclusive and more research is needed.
Document: An early case

None of the adults included in the study had an existing diagnosis of autism, though in a few instances relatives told researchers that they had suspected it.

In one case, a man said he had asked his doctor about the possibility but was told that a diagnosis in middle age would be useless.

After all, he had gotten this far without it.

(article continues on the web site here)



DemonAbyss10
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16 Dec 2011, 7:50 pm

thats basically how id view it, the rate really never changed, its just that there is more of an effort to diagnose now than in the past. There really isn't an "Epidemic". The epidemic talk is just fear mongering by the media :/


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16 Dec 2011, 11:01 pm

Thanks for sharing this excellent article. I've posted a link to it on Facebook.


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16 Dec 2011, 11:02 pm

DemonAbyss10 wrote:
thats basically how id view it, the rate really never changed, its just that there is more of an effort to diagnose now than in the past. There really isn't an "Epidemic". The epidemic talk is just fear mongering by the media :/


Exactly.

Now that my mother knows I'm autistic, she says she thinks she's known many other autistic adults who probably didn't know they were autistic as well. I'm actually kind of certain of the same thing.



DemonAbyss10
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16 Dec 2011, 11:36 pm

Verdandi wrote:
DemonAbyss10 wrote:
thats basically how id view it, the rate really never changed, its just that there is more of an effort to diagnose now than in the past. There really isn't an "Epidemic". The epidemic talk is just fear mongering by the media :/


Exactly.

Now that my mother knows I'm autistic, she says she thinks she's known many other autistic adults who probably didn't know they were autistic as well. I'm actually kind of certain of the same thing.


Well I was thinking of it in the first place due to sister mentioning that she thinks she might have my issues, and I am like "Its possible, It is under-diagnosed in women." What is funny is that the conversation took place like 5 minutes before I stumbled upon the thread.


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16 Dec 2011, 11:59 pm

DemonAbyss10 wrote:
Well I was thinking of it in the first place due to sister mentioning that she thinks she might have my issues, and I am like "Its possible, It is under-diagnosed in women." What is funny is that the conversation took place like 5 minutes before I stumbled upon the thread.


My sister's sensory issues are so much like mine I kind of wonder. But I don't think she's autistic, just ADHD, fibromyalgia, and maybe bipolar. I suspect she might have a narcissistic personality type, but I am at this point not willing to extend that to, say, a personality disorder.



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17 Dec 2011, 12:04 am

I feel like I slipped through the cracks, since my problems didn't become an issue until my teens and I wasn't diagnosed until early this year – but these people, jeez! I can't imagine reaching my 60s without someone noticing something.



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17 Dec 2011, 12:32 am

Great article

I think we should all be rightly angered at the media for portraying autism as a "childhood" disorder; films, news and need I say it - Autism Speaks - have rarely given these baby boomers autistics any coverage, yet these adult autistics who grew up in ignorance will often have it worse then us with no support to speak of outside family.

This all helps continue the general publics idea that an autistic is always a child, never considering that autistic children grow up to be autistic adults.


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17 Dec 2011, 12:50 am

Generation X autistics are often described as "the lost generation" as well.

And it is angering.



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17 Dec 2011, 12:53 am

I knew there were lot of undiagnosed adults and figured the reason why it seems like autism has increased is because kids are being diagnosed now. Back in the days they were never diagnosed because AS wasn't known and autism was severe back then and in their own world and have no speech. The high functioning ones were left un noticed.



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17 Dec 2011, 1:46 am

Thank you for the article:) And I agree that Autism isn't an "epidemic." Rather, more people are gaining an awareness of it and more doctors are able to recognize and diagnose it.



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17 Dec 2011, 2:17 am

Am I the only one who thinks it's a much higher rate of incidence than 1%? I mean, because of the way population is distributed, for every person who's considered a "clinical autistic" there are going to be many more people who are nearly as bad, and then there are even more people who are just a little bit worse than them



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17 Dec 2011, 2:30 am

*Daniel is hiding in unseen sight*



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17 Dec 2011, 2:34 am

After a lifetime of major Asperger's-related problems gone undiagnosed until last year, I keep getting angry at mental health professionals. They seem to think that if you've managed to learn a few social skills after decades of being on this planet, then you couldn't possibly have AS. And what's really sad is that my 13-year-old diagnosed aspie daughter has similar problems just because she's very intelligent and has a special talent for words, even though she can't look people in the eye, etc. I think people simply can't accept on a gut level that someone can be really intelligent and have a disability. They will think up every possible alternative explanation, no matter how ill-suited, to avoid the one that fits like a glove.

I really don't like being angry and ranting like this. It's not my norm. But it seems like every time I think I'm over it and ready to move on, something else happens. Like the other day when I took my daughter to an initial visit with a psychologist from Kaiser's newly formed AS team, and one of the first things the psychologist said to her was "Tell me about all your friends at school!" in an enthusiastic voice. The answer, given with much discomfort, was "I don't have any." This was just one of several inappropriate things said to her. I don't know how to let go of the anger and move on when these sorts of things keep happening.


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17 Dec 2011, 12:22 pm

I'm one of the missing-- or I was, and don't know whether the Mental Health Center or the lady at the Children's Hospital who diagnosed me ever "reported" me to anyone or not :D . I was diagnosed with Asperger's for the first time just a couple of years ago, age roughly 64-65. I've had a reasonably good life, was married for thirteen years, raised a daughter to adulthood, held a lot of different kinds of jobs, never kept one for longer than a couple of years, and am now on Retirement Social Security. It's not as if I never saw Psychologists-- actually, I was married to one! But nobody knew what it was in those days -- "Autism" was something that made you non-functional, so the hospital would be the place to look for an Autistic. I was first treated for Clinical Depression in the seventies, and my husband knew that I had that, coming in cycles, well before that, but I didn't want to take any pills then -- just as well: the things they were using for depression then didn't do much. I now use the modern antidepressants, SSRIs, usually. Now know that both the depression and the anxiety arise from the Asperger's, but there isn't a pill for Asperger's. The person who first "diagnosed" me was my daughter, now an adult, who took some counseling courses in Christian College. I was going to a Mental Health Center for my antidepressants at that time, so she put her two cents in there and they sent me to the lady at the Children's Hospital for a real diagnosis.

I do believe that there are a lot more like me in the world. I see various indicative traits all the time. Sometimes I say something, but the ones who are mild like me and getting along reasonably okay don't _want_ to be told that there's something "wrong" with them, usually. For me, it was a great relief, because I always knew there was something wrong with me, having no or few friends, and often people seemed to react to me as if there were some sort of psychic "bad smell" about me. I wish I'd had some Social Skills Training when I was a young kid. For me, the research just needed to have been started a lot sooner. One of my college friends noticed the "mechanical walk" and the inappropriate facial expressions in conversation, figured those were at least part of my problem, tried to help me stop doing them -- and she was right! That was 1962.


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17 Dec 2011, 12:56 pm

DemonAbyss10 wrote:
thats basically how id view it, the rate really never changed, its just that there is more of an effort to diagnose now than in the past. There really isn't an "Epidemic". The epidemic talk is just fear mongering by the media :/



Exactly. I am 42 and grew up before PDD-NOS and Aspergers we're diagnosis's. I can easily go back through my high school yearbook and find 1 out of a hundred kids that I can retrospectively say had some form of ASD. There's no epidemic.