You would think autism only affects parents....

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idlewild
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10 Jan 2015, 10:12 pm

<rant> It seems like all you hear about, either in mainstream or social media, is parents talking about autism or how it affects them or how it affects their children. You could very well get the impression that autism isn't something that affects autistic people, just their families.

Sometimes it feels like WP is the only place I actually hear autistic voices talking about their experience.

The cynic in me sometimes thinks this emphasis in the media, aside from awkward kids being cuter than awkward adults, is because you can build an industry around frightened parents far easier than you can around autistic adults. <end rant>


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cyberdad
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10 Jan 2015, 11:03 pm

I'm a parent but I prefer to read what autistic folk have to say on WP. I joined some parent forums a few years ago but there's a lot of people who think they know whats best for everyone else.

However, I have met other parents of autistic kids and found they are not all like Jenny Mcarthy :wink:



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10 Jan 2015, 11:04 pm

The problem is adults and teens are rarely interviewed by the media or society in general.
Kids are just cuter and make for better sound bites and parents sell the piece better.


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11 Jan 2015, 12:07 am

I hope that the media changes for the better, so that we will all be interviewed. The media and the public would be in for a big surprise to find out how we on WP feel about how and who autism affect.


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11 Jan 2015, 12:45 am

I seriously have no idea with the whole "parents are the real victims". So what I'm not the damn "right" neurotype. I am a human being.

I think the only solution is independent documentaries that document real autistic people. I'm tired of these half-assed media representations and pity stories.



B19
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11 Jan 2015, 2:28 am

I've noticed that some of the English media - the Guardian particularly - runs quite a few articles written by or about adults on the spectrum from a spectrum-friendly perspective, and relatively few from a parenting perspective unless they too are sympathetic to the spectrum. It seems that this doesn't happen in the USA, at least from what I can see from here. Why is that? Unless its a shooting, or a celebrity, the USA media lacks coverage about adult ASD people by adult ASD people, though plenty of stuff that fits the Autism Speaks point of view and serves AS public relations agenda.

Is part of the reason for the situation in the USA that "ordinary" adults don't write articles or offer interviews to the media, or is it that these are turned down in the USA eg as not sensational enough? I don't read a lot of US media apart from The Huffington Post - which occasionally does run pieces, so perhaps there is a lot of positive adult coverage in other US media that I don't know about.



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11 Jan 2015, 12:29 pm

B19 wrote:
I've noticed that some of the English media - the Guardian particularly - runs quite a few articles written by or about adults on the spectrum from a spectrum-friendly perspective, and relatively few from a parenting perspective unless they too are sympathetic to the spectrum. It seems that this doesn't happen in the USA, at least from what I can see from here. Why is that? Unless its a shooting, or a celebrity, the USA media lacks coverage about adult ASD people by adult ASD people, though plenty of stuff that fits the Autism Speaks point of view and serves AS public relations agenda.

Is part of the reason for the situation in the USA that "ordinary" adults don't write articles or offer interviews to the media, or is it that these are turned down in the USA eg as not sensational enough? I don't read a lot of US media apart from The Huffington Post - which occasionally does run pieces, so perhaps there is a lot of positive adult coverage in other US media that I don't know about.


How do you make compelling stories about an under/unemployed 30 something living at home with his/her parents, and not make the person look pathetic or the parents saints? Especially when there are no support services to be had.

There is virtually no support for Aspeger/HF adults in the US. In my area NONE. To get help, usually the person derails and gets punted into the mental illness camp with a diagnosis of severe depression/and or OCD/anxiety. Then there is some (not much) help. There is no housing help for under employed/unemployed Aspies.

If there is a positive story, the person has family who has enough money to throw at the problem. They own their own business, the family is well educated, or socially connected.

My husband could use speech therapy (pragmatic and receptive issues) and PT (trouble with movement of limbs). There is no help here even if we could pay for it. You white knuckled it for 54 years, so why is it a red hot now?

America is sink, swim or swim with a whole of of help from your upper middle class/wealthy folks. Almost all Autism stories I have read is a person finally doing well, but the family has some serious connections or cash.



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11 Jan 2015, 2:24 pm

I think that the higher functioning end of the spectrum is one of the most underdiagnosed and most stereotyped conditions out there right now, though that is slowly changing, despite the changes made to the DSM in the 5th that were made to prevent "overdiagnosis" of ASD.

And I think societies tend to hold on to their stereotypes and we, meaning society, also have a "doctors know it all" and a "we can't live without the experts" mentality. So, if you grew up or became successful in some way without their help, your credibility and your efforts are minimized. They might say, "Well, you must not have x condition that bad." Or "Well, you must not really have condition x because you'd not be this good right now without this or that treatment or therapy."

I also think that parents and professionals tend to almost not want a person with autism to get "better." I've heard it both ways. It's like one or the other: cure it or give up on it and treat the person like they are a lost cause. I hope I am just seeing this because of reporting bias: negative stuff is more likely to be reported. You read stuff about, "Well, the specialist said my child can't do this or that." How does the specialist know what that kid can or cannot do and why is the parent surrendering to them? Do they not think the kid is listening and internalizing these things about themselves?

And I think the thing about the media not listening to or acknowledging autistic adults is that if they did, their entire agenda and everything they hold to in their beliefs about autism would be contradicted or completely blown out of the water. Nobody really likes cognitive dissonance.



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11 Jan 2015, 3:48 pm

Interesting points there.

Yes, the cognitive dissonance - I hadn't thought of it in terms of the media until just then.
On WP the cognitive dissonance happens sometimes too - the "if he's so successful how come he thinks he's on the spectrum".. which just reinforces the myth that ASD people can't be successful.



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11 Jan 2015, 4:11 pm

We need someone like Alex to do a documentary that features people on the ASD spectrum who have become successful ... stayed out of institutions, earned college degrees, raised families, maintained relationships and/or careers ...



B19
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11 Jan 2015, 4:18 pm

Yes, the counter-PR movement is really needed, Alex would be a very good person to do it if he chose.



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11 Jan 2015, 4:19 pm

It drives me crazy when I hear people talk about how hard it is to parent a child with autism. I mean, the person with autism has a harder time of it - they're the one having to live with it! And every child is hard sometimes, whether they have autism or not. It just sometimes feels like they are blaming the child with autism, when they can't help their difficulties.



cyberdad
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12 Jan 2015, 4:46 pm

Lets look at it from the media point of view...

There is a theme that revolves around people going through tribulation with a child who has severe complications. But somehow they get through it and win a merit badge! Parents of severely autistic kids therefore get more airplay. Of course they aren't going to interview the kids if they are non-verbal or mute.

There are TV documentaries on HFA kids who despite their autism become successful, however they tend to focus on the genius end of the spectrum. I suspect there's little media interest in "average" people who have a job, get married and have kids talking about their Aspergers. Perhaps producers like Alex can think of a creative way of documenting this group that's interesting to the NT audience.



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12 Jan 2015, 4:55 pm

The only time those average people in the middle are reported is when one of them is accused of criminal behaviour. As you say, the existing coverage is skewed toward the tails of the Bell Curve. Change has to come from the ASD community, there is no alternative...



cyberdad
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12 Jan 2015, 5:08 pm

B19 wrote:
The only time those average people in the middle are reported is when one of them is accused of criminal behaviour.


To be fair to the media, the Anders Breviks or Adam Lanzas get airplay because of their actions rather than because of their diagnosis.



B19
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12 Jan 2015, 5:10 pm

Typically the media focus moves from one to the other in a very predictable fashion..