Aspies to be demoted to Autistics.

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Same here, i don't want it either, and i've been declared a 100% unable to work among other things which i wont elaborate about, i'm already glad i get something else we would have been living with the Salvation Army already :/ So i don't think its very nice to just assume and look down on it, some people simply don't have a choice. The last part is meant for Dillogic by the way, so no misunderstandings occur later on xD

curious again- how did you get your advocate?

I signed up for disability lifeline in November of 2010, and received an appointment for an evaluation. Two weeks after the evaluation, I was notified that to remain on benefits I would have to apply for SSI, and was also given an appointment time and day (December 29, forgot the time) to meet with an advocate to assist me.

If I'd be demoted from PDD-NOS to Autie I'd gladely take it.

Because below minimum wage is better than nothing and having no income coming in?

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My initial application I got help from my therapist, but more relevantly, my appeal I found someone to help with - at the local for center for independent living.

These centers apparently are all around the US, and help people with various types skills and other things necessary for more independent living and will help with SSI/SSDI applications and appeals.

I'd rather have a job, but really, its not a realistic possibility now. I've been working with vocational rehab, and they've even declared me currently unemployable because of my disability.

i sure hope that the outcome of this fiscal cliff bs doesn't end up with your benefits cut.

They've already been cut twice, but that was in 2011.

I hope that we don't see benefits cut because of all the nonsensical grumbling about "entitlements."

I'm pretty sure he meant that he didn't know why anyone would want to go on welfare if they were capable of getting and keeping a job that is more likely to pay more.

Just FYI and all, I'm on disability. If given a choice, I'd rather work like everyone else and not have this disability that prevents that; that's the point of my post, which was in reference to another post, which I see as alluding to people wanting the label "autism" because "Asperger's" can't get welfare (though it can). (I could have read it wrong though.)

I thought you were responding to the comment on the bottom of page 11, but wasn't completely sure as it wasn't quoted. I agree with your interpretation of that comment. SSI benefits are somewhere in the neighborhood of $700 a month, and SSDI benefits are very difficult for many adult people on the spectrum that cannot or never have worked as many don't have the work credits required. A single person can't expect to get much more than $100 a month in food stamps, on SSI. And, government subsidies for housing are not easy to come by.

There haven't been too many modern day longitudinal studies on adult outcomes, but the linked study below shows close to 80% of a group comprised of individuals with Autistic Disorder, PDD NOS, and Aspergers syndrome receiving disability pensions in Norway before they reached the age of 18.

The social welfare state in Norway as well as other Scandinavian countries is more generous and less of a stigma than what one finds in the US. Interesting, how the welfare of Society, can be looked at so differently in a homogenous society vs. a melting pot like we have in the US. Of course, that too is changing in some Scandinavian countries along with the homogenous natures of some of the societies.

The difference in the US, is likely that many of the young adults that might not be considered employable and do not qualify for benefits, are living at home with the financial support of their families.

Anyway, the research that exists solidly supports the outcome that all forms of Autism Spectrum disorders are a substantial source of disability. And at least in Norway, per that group that was studied, a major source of disability.

The voices on the internet are not close to representative of the entire spectrum. If one looks across the registration pages here, that I've looked through a few times and done a rough estimate, the percentage of people on the spectrum reporting spectrum disorders other than suspected, self diagnosed, or diagnosed with Asperger's syndrome does not appear to be more than 5 percent of individuals reporting an association on the spectrum.

That is almost completely opposite of the CDC statistics that show the condition of Asperger's Syndrome as only 9 percent of that demographic actually diagnosed. There are not a majority of people reporting themselves on disability benefits on this website, but there are certainly a substantial number of people reporting problems with finding employment or sustaining employment, still living at home with their parents.

I suspect the majority of people on the spectrum use the internet, but not for social networking purposes for the purpose of socially connecting to people. And while the demographic of genders here when informally polled at about a 1 to 1 ratio, is far from reflective of the government statistics, the owner of one of the most popular facebook pages, "Thautcast", operating as an autism/asperger's online community released a statistical report that close to 80% of the users on that site, were females.

The gender balance on facebook is already reported in the ball park of 60% female, but that 80% statistic anyway one looks at it, is interesting, considering the CDC 5 to 1 male to female ratio. Very few people report anything other than a diagnosis of Asperger's syndrome on that facebook page, but there is not a registration record to look at.

My point there is that there could be some stereotypes generated online about the spectrum, that are not representative of the entire spectrum demographic. One I often here is that people on the spectrum are hyper empathetic. That's certainly a far distance from what either Kanner or Hans Aspergers described. Atwood and Cohen obviously still identify substantial difficulties in that area too, but validate a subgroup of higher empathy levels, for those that identify as part of it.

Alexithymia has been measured and identified prevalent in 85% of people on the spectrum. Alexithymia is also a major issue associated with impairments of empathy. There have been some studies that show "affective/emotional" empathy impaired at substantial levels among people on the spectrum, per actual brain studies, while those not described as having the Alexithymia condition were measured with higher levels of "affective/emotional" empathy in the brain studies.

Cohen and others have identified greater problems with empathy among those diagnosed with Autistic Disorder as opposed to Asperger's Disorder along with more difficulties with what is described as "theory of mind" that has been associated with difficulties with "cognitive" empathy.

It's interesting when people suggest that there are no major problems with empathy among people on the spectrum, as that is a core problem that both Kanner and Hans Asperger's identified in their patients and case studies, and a major issue of difficulty identified in Tony's Atwood's experience with over 2000 individuals diagnosed just with Asperger's Syndrome. Not just his observations; difficulties that people on the spectrum have actually described in his clinical practice. It's even more interesting when some suggest that Hans Asperger's did not know what he was talking about because he is an "NT"..

But, Kanner did suggest that it was not just a biological innate issue, but instead a cultural one as well. Medical professionals can burn out their empathy, and lose their capacity for it, as well as their capacity for compassion. Those that exercise compassion and regulate their emotional empathy response, have been studied as those that are more resilient to burnout. I suspect that type of empathy burnout might happen at younger ages for some people on the spectrum for a variety of biological and/or cultural reasons/stresses, and could be a source of many difficulties associated with the spectrum including Alexithymia, Fibromyalgia, some immune system problems, anxiety, depression, some GI problems, and anything else that could be the eventual result of chronic stress and/or emotional dysfunction

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3360852/

In light of this perception by some of Asperger's as an "inherently highly functioning condition", the individual that seems to be the lead public commentator from the DSM5 working group, Dr. Catherine Lord, provides what comes across as a rather blunt comment quoted and linked below.

This is the individual that was just quoted on December 10th as stating "essentially everyone gets in", in reference to the final revision of the DSM5 ASD, for those that previously held a diagnosis. This is also the individual that recently led research that suggested that "only" 10 percent of the currently identified spectrum would not be diagnosed under the new DSM5 ASD definition. I would like to to know how this lead scientist from the DSM5 working group determined "that most people who use Asperger's would not have met the DSM-IV criteria". This article wasn't a "fly by night" article, it was a cover story on New York Magazine.

http://nymag.com/news/features/autism-s ... ndex6.html

I think she meant that most of those diagnosed with AS would have been more appropriately diagnosed with autism. That they failed to meet the AS criteria by meeting the autism criteria, not because they were not on the spectrum at all.

There's nothing shameful about being autistic. Most people in society can't separate AS and autism anyway.
If you're one of those people who think they are better for having a high IQ then I don't care whether you lose your diagnosis or not. You won't actually. And for those who still aren't away autism gets a new symptom, one that has been grossly neglected: sensory processing issues.

A diagnosis should really be about treatment though. My diagnosis got me on the pension which I need because I'm unable to work. My sensory issues are probably the most severe but I still have social communication issues and problems adjusting to change.

I'm sure there's heaps of people with AS who can work, just as the converse is true. I like to get across that AS is severe enough to cause disability that will interfere with various key areas of life; whether 80% are on a pension or 10%, it doesn't matter; what matters is that it's possible. I think this has been lost somewhere along the way (popular opinion).

Whether your social impairments cause a lack of peer relations, your repetitive behaviors interfere with schooling, and/or any other important area of functioning, that's what makes it a disorder; a clinical entity. You don't need to be impaired in all ways, but you need to be impaired in some way; a lack of friends (that you want) is equally as important as a lack of the ability to work (that you want).

And it's been like that since the beginning.

Not sure what you mean by popular opinion, so not sure if we agree or disagree on some points here. I don't have any studies to back any of this up, so all of it is my impression of our situation as a group.

I think the vast majority of us do work. I think a great deal of us may have trouble with relationships, but marry and have families, or are involved in other long term relationships.

I think as a result of the above, and because popular opinion is that AS and autism are always more severe than many of us often are, a great many of us are looked upon with skepticism when we reveal that we're autistic.

In other words, popular opinion is that autism is severe, but due to that popular opinion, popular opinion of many of us as individuals is that we're not disabled at all.

In still other words: "You don't look autistic to me."

Most of the data I've found on this says the opposite: Most of us don't work or are underemployed.

I think a lot of us do work, do have families, etc., and don't know why some things are so hard. I think some of us don't even realize that we're impaired because the impairments themselves interfere with the ability to perceive this. For example, how you pointed out that autistic people are self-centric, and tend to be surprised when others indicate they think differently. I think deficits in social understanding and reading nonverbal cues can lead one to simply not realize there's supposed to be anything there, or only acknowledge what one does see as existing, and the rest as irrelevant.