Ignorance adds to stigma, again.

12 Dec

The Los Angeles Times has started a new series on autism. The opening piece is Autism boom: an epidemic of disease or of discovery? It’s a tough piece to write: how to discuss the fact that a big factor behind the rise in autism diagnoses is sociological (which is accurate and good to get out there) without fueling the “parents just want to milk the system” mindset (which is inaccurate and stigmatizing).

I wanted to write about the piece but, instead, a comment has caught my attention. Sue Basko who, by her comments, is rather ignorant about autism and the services/supports available, left the comment below:

Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this “epidemic.” Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism.

In a recent comment on her Facebook page, she writes:

THIS MAy not be a big deal for others, but my blog got 800+ hits in the past 16 hours. It means so much to me that people read what I write.

Given this, I am bringing what she writes to a larger audience: the readership of Left Brain/Right Brain. In doing so I am breaking a good rule: don’t blog (or tweet) while angry.

I find it ironic, to say the least, that someone who is actively contributing to the stigma of autism is using this as part of her argument.

Somehow I have missed out on the cash cow that my kid presents to me. I am not able to “live off the payments” that are offered. Heck, I’ve never even been offered SSI (Social Security’s “supplemental Security Income”).

Ms. Basko would be well advised to re-read the article she commented upon. Here’s one segment I would highlight:

Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

The rise in autism diagnoses in California has occurred in wealthy areas (for example, West Hollywood), urban areas, and less so in racial/ethnic minorities and people in rural areas. Hispanic immigrants, legal or not, have actually avoided seeking out services due to Proposition 187.

67 Responses to “Ignorance adds to stigma, again.”

  1. Liz Ditz December 26, 2011 at 23:17 #

    Back to the real subject: autism and SSI. Found this from Resident Alien last year: (the Catch-22 of SSI):

    What you get out of it is income that is a great deal less than the federal poverty limit; usually just barely enough to live on, if you are very frugal, and often not enough to live on, if you are either not good at handling money or live in an expensive area. There are homeless people on SSI, and through no fault of their own, either. Not being able to handle money is one of the reasons you might be on SSI. Horrible executive function is another. How do they expect you to handle all that paperwork, and live hand-to-mouth every month, careful to monitor every penny, when one of the reasons you might be on the plan to begin with is that you aren’t even capable of monitoring pennies or handling paperwork? I have enough trouble with it, and I’m an engineering student who handles differential equations routinely. What if I had, say, mental retardation, or a TBI in just the wrong place, or for that matter even simple dyscalculia? Yeah, they’d still expect me to do this, and kick me off if I couldn’t. Being disabled, apparently, is a full time job that some disabled people can’t do.

    The nature of SSI, despite all the government’s protests to the contrary, is to trap you in the system and keep you there. You have to work very, very hard to get off it–harder than you did to get on it. If you’re disabled and you want to work, and you can’t do a simple job, and you need a degree or a certificate or any sort of schooling at all… it gets very, very complicated.

    Go read the rest of it.

  2. sharon December 27, 2011 at 01:07 #

    I wonder how she responds to the fact that rates have increased steadily world wide? I don’t know have a clue what an SSI is, except that it appears to be some form of financial support. Point is how does she explain the increase in countries that do not have such a payment?

  3. Anne December 27, 2011 at 17:21 #

    Re Liz Ditz’s comment on SSI, the tiny People With Disabilities Foundation in San Francisco has filed two lawsuits in against the Social Security Administration alleging discrimination against people with psychiatric and/or developmental disabilities because of their failure to accommodate disabled people in their communications. The paperwork and red tape creates an insurmountable barrier for some people who are qualified for benefits.

    And Prometheus is right … an autism diagnosis is no guarantee of eligibility. That nutty Hollywood entertainment lawyer, Sue Basko, obviously failed to look at the Social Security appeals decisions, or she would know that.

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