Troubled Future For Young Adults On Autism Spectrum

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tall-p
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12 Jun 2014, 2:10 pm

June 9, 2014 | 6:04 AM |

Martha Bebinger

?Mom, Dad, what?s wrong with me??
Michael Moscariello was a smart, thoughtful 10-year-old when that question burst out one evening before dinner.

He knew from kids at his school in Reading that something was not right. His parents knew too; they had a diagnosis. But it was a condition that almost no one had heard of ? not doctors or teachers, and certainly not friends or family.

That night, Michael?s parents used a classic diversion tactic. ?Nothing?s wrong, nothing?s wrong, everything?s fine,? Michael remembers them saying. ?Do you want to get pizza??

May Moscariello, Michael?s mom, had taken him to Franciscan Hospital for Children in Boston three years earlier, in 1988. ?They evaluated him and came up with Asperger?s syndrome. It was their first case,? May says. She remembers a doctor telling her that Asperger?s was a hot topic in London at the time. The doctors ?gave me a lot of written material from England,? she says. ?None of it mentioned autism.?

Today, Asperger?s is folded into the broad diagnosis of autism spectrum disorder (ASD). This includes people like Michael who are bright and articulate, but can?t understand the look that says, I?m serious, or that hint of sarcasm in a friend?s response, or why people back away during a conversation. One in 68 children in America has an autism spectrum disorder.

Michael, now 32, is on the spectrum, as is his younger brother, Jonathan, 29, who has a sort of catchall diagnosis of pervasive developmental disorder not otherwise specified. Their lives, as adults with autism, raise troubling questions about whether the flood of children receiving this diagnosis will find meaningful work, safe housing and networks that will help them become happy and productive adults.

?[My sons are] the pioneer generation? for children on the autism spectrum, Pete Moscariello says.

Being The 1st Child With Asperger?s ? Over And Over Again

The Moscariellos? pioneering journey with autism began with Michael. His childhood was a series of ?dead ends, many, many dead ends,? says May, a small, fit woman who coaches amateur figure skaters.

http://commonhealth.wbur.org/2014/06/ag ... m-services >> the rest of this story + photos + reader's comments


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B19
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12 Jun 2014, 3:37 pm

"Being the first child with autism"?

The whole tone of this article is like this "pioneer" suddenly arrived on Earth, a pioneer in a world that no-one but him had ever gone to, before the 1980s. Actually I felt a bit queasy after reading it, syrupy and misleading, and lacking historical context.



BirdInFlight
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12 Jun 2014, 3:44 pm

I'm bit confused -- the article states that Asperger's was a "hot topic" in London in 1988. I lived in London in 1988 (grew up here) and I never heard of Asperger's back then.

I recall Asperger's becoming more of a hot topic in general more like ten years later.


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kraftiekortie
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12 Jun 2014, 5:41 pm

As you know, Autism, in the traditional sense, has been around since at least 1943, with Leo Kanner's work. Hans Asperger wrote his article in 1943 as well. Asperger's Syndrome didn't exist until at least 1980. It wasn't well known among the general public until the 1990s.

"Autism," from the 1940s until the end of the 1970s, was what is called "Autistic Disorder" in DSM IV, plus what is considered "childhood disintegrative disorder" in DSM IV. Autism, as an entity, definitely existed then, though it wasn't the "spectrum" that it is today.

"Autism" didn't include what is called "Asperger's Syndrome" in DSM IV. People who would be Aspergian today would have been diagnosed with many things, prominent amongst them "brain injury" and "minimal brain dysfunction."



Apple_in_my_Eye
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12 Jun 2014, 7:27 pm

BirdInFlight wrote:
I'm bit confused -- the article states that Asperger's was a "hot topic" in London in 1988. I lived in London in 1988 (grew up here) and I never heard of Asperger's back then.

I recall Asperger's becoming more of a hot topic in general more like ten years later.


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Yeah. Asperger's was first in the ICD in 1992 (and the DSM in 1994), so those shrinks must've given the diagnosis in an almost experimental, "bleeding edge" sense. ...Which is kind of weird; how useful with officials would a non-officially existent diagnosis be?

I guess it's comparable to "complex PTSD" which (I think) isn't in the DSM V, but is recognized by some therapists. Still seems weird, tho.



Dillogic
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12 Jun 2014, 7:30 pm

This post right here is dedicated to all fake pioneers.



EsotericResearch
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12 Jun 2014, 7:43 pm

Weary of all these "autism is a tragedy" articles. Unemployment affects everyone, let's talk about autism acceptance. How about let's talk about all the tax dollars and other resources that most autistic people, who work, contribute, and how NTs can understand autism - how autistics who are successful can mentor other autistics and also how we can educate NTs, instead.



B19
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12 Jun 2014, 7:44 pm

I bristle at the title - it's very stigmatising and hope-deleting :(

And (having a literal moment) if you will excuse me, pioneer = someone who navigates raw, uncharted territory, not recognised and defined territory.

Why did it take the medical world 40 years to listen to Hans Asperger? (Compare previously, they couldn't grab Freud's ideas fast enough). Maybe because the original work was in German, his first definitive article published in 1944, though perhaps is it more likely he was ignored simply because he was German?)

Whatever the case, the 40 years hiatus until the beginning of formal diagnosis of AS in the 1980s has caused a lot of suffering to a lot of we older spectrumites. We were the real pioneers, I think. We lived and had to negotiate a territory that really was uncharted.



BirdInFlight
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13 Jun 2014, 5:13 am

B19 wrote:
I bristle at the title - it's very stigmatising and hope-deleting :(

Why did it take the medical world 40 years to listen to Hans Asperger?

Whatever the case, the 40 years hiatus until the beginning of formal diagnosis of AS in the 1980s has caused a lot of suffering to a lot of we older spectrumites. We were the real pioneers, I think. We lived and had to negotiate a territory that really was uncharted.


I don't disagree with these points. Yes indeed.

In the 80's I never heard a lick of mention of Asperger's even though Hans Asperger's conception/crystallization of it dates back decades. But I sorely wish I had because I would have cottoned onto a whole lot more understanding of myself --- and so might my family have done --- a lot earlier in life enough to help me have a better life according to my true needs, weaknesses and strengths.

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