Tuesday, November 02, 2010

Autism, Capitalism and the Autism "Self" Advocacy Industry

I don't usually find much of value in the various Neurodiversity commentaries on the internet. From Jim Sinclair to Ari Ne'eman it is always the same claim by some very high functioning person to speak on behalf of all persons with autism including those, like my son,  with actual Autistic Disorder diagnoses who are severely affected by their autism disorders. I commented yesterday in my post Autism is a Mental Disorder for Which Cures Should be Sought on the tendency by some self proclaimed autism representatives to  describe autism as everything but what it is .. a medical disorder ...  a mental disorder, a diagnostic category in the DSM and ICD.  Today I read a comment on a site  cripchick's blog  called Autism, Capitalism, and the Establishment which I found interesting even though I disagree with much of it. In that comment cripchick criticizes what she describes as an autism advocacy industry. She  places her criticisms of the alleged autism advocacy industry  in the context of what she describes as the Non-Profit Industrial Complex (NPIC):

Non-Profit Industrial Complex (NPIC) is a system where non-profit organizations become about making money and maintaining the status quo. A lot of people feel offended by the NPIC critique, but without this conversation we can’t really talk about the environment we are trying to create change in, the role institutions play in our work, or our vision for the world we want to live in.

This is what the INCITE! Women of Color Against Violence , an organization who has been doing a lot of work around the role of the NPIC, says about the NPIC:

The state uses non-profits to:
Monitor and control social justice movements;
Divert public monies into private hands through foundations;
Manage and control dissent in order to make the world safe for capitalism;
Redirect activist energies into career-based modes of organizing instead of mass-based organizing capable of actually transforming society;
Allow corporations to mask their exploitative and colonial work practices through “philanthropic” work;
Encourage social movements to model themselves after capitalist structures rather than to challenge them.

It has been a long time, maybe decades,  since I have stumbled upon such an anti-establishment critique.  Like most such commentaries it is often easy to mock and dismiss but there are some thought provoking elements in the critique. Essentially though she cripchick alleges that autism advocacy causes are  governed by self interest , eg. paid, sometimes government and industry subsidized,  charity directors and officers, and used by state and industry interests to prevent positive social change.

It would be interesting to apply cripchik's critique to the autism "self " advocacy industry and to those very high functioning professionals who have made careers, sold books and otherwise promoted their own very personal self interests by promoting themselves as "autistics" who do not want to be cured and who, although they have a medical diagnosis of autism or Aspergers, do not see themselves as having a medical disorder.  By pretending that autism disorders are not medical, mental or psyshiatric disorders does the autism "self" advocacy industry reduce pressure on government and industry to find the external or environmental causes of autism disorders. Does the autism "self" advocacy industry, with its anti-cure rhetoric take the pressure off of governments to find cures for a mental disorder which now affects 1 in 110 persons including 1 in 70 males?

cripchik doesn't take her radical critique that far though. She sticks to criticizing those parts of the autism advocacy industry that work towards, or purport to work towards, goals such as curing autism.  She provides no similar critique of the anti-cure autism "self advocacy" industry.  Her criticism, in the end, seems little more than another variation, a "natural" variation, of the same old autism self advocacy industry denials that autism disorders are in fact medical disorders.


MJ said...

What I find interesting in these lines of thoughts is that the self-advocates almost always feel that they are being persecuted or that someone is out to "get" them.

The classic example of this is the idea that Autism Speaks is researching the genetics of autism with the goal of forcing the abortion of the "autistic race". Autism Speaks has it faults, but for some reason I don't think that they as are conducting a eugenics campaign.

Paranoia like this normally isn't a trait of autism but can be a trait of several other mental illnesses and at least one of then has the potential to be confused with autism.

Carl said...

i see a slightly different tangent in her article

to me it is more along the lines of saying that the groups are enriching the executive with little or no actual funding making it through to base research and assistance

while i find that concept disturbing it has been proven to be the case in some significantly larger "aid" organizations like the red cross and "adopt a foreign child" type agencies

the problem that occurs when this type of behaviour arises is that it taints all those who are trying to improve the lives of others with the same brush

Laura said...

This really made me think. I'll be honest and say that to date, I haven't agreed with you very often, but this really stopped me in my tracks.

It was this part that got me:

"Does the autism "self" advocacy industry, with its anti-cure rhetoric take the pressure off of governments to find cures for a mental disorder which now affects 1 in 110 persons including 1 in 70 males? "

That's a HUGELY important point. One that I've never considered. I mean regardless of whether an individual wants to be cured or not, they shouldn't group up and have the effect of preventing a cure for those who do want one. What if someone did that for something like cancer? People would be screaming through the streets! No, that's not right. Government, doctors, scientists, researchers should all be feeling the pressure to find answers about Autism. They should not be letting up because some Aspies/Auties don't want a cure.

I'm going to have to re-evaluate and more carefully consider my position. Thank you. I mean that sincerely.

Minority said...

As a librarian, I find that some advocacy groups that accept industry money end up working within the lines. Examples are breast cancer organizations that do not research environmental causes but concentrate on the cure and early detection. Most of them get lots of money from drug companies that "treat" breast cancer.

Diabetes is another illness where causation is neglected. The concentration on treatment is a bonanza--why dry it up by keeping people healthy?

When you look at the web-site of an advocacy organization, a drug company logo is a give-away. Sometimes it is necessary to dig deeper and look at the non-profit tax return to find out who is funding their work.

Anonymous said...

Can you please refrain from calling autism a "mental illness." It is no more a mental illness than bi-polar, schitzophrenia, depression, etc. Those words are words that describe symptoms that lead to something else........ in most cases..... Lyme's disease. Truly, all of these "mental illnesses" ARE merely symptoms of something else. There is a toxin behind all of these disorders, whether bacteria, chemical or virus.

Autism Reality NB said...

Anonymous 11:14 (MM)

I did not call autism a mental ILLNESS. I called it a mental disorder which is what it is, by definition. It is described as a mental disorder by its inclusion as a diagnostic category in the DSM ... the Diagnostic and Statistical Manual of MENTAL DISORDERS of the American Psychiatric Associaton. The APA states in the DSM:

"Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system."

Describing autism as a mental DISORDER does not imply anything about what causes autism. I happen to think, and I have written many times on this blog, that autism results from the interaction of environmental and genetic factors.

Anonymous said...

So, we have Neuro-typical colonial imperialism? Flash-back city, man... While I'm very unhappy with the highjacking of the Autism Dx, I have a hard time fitting that reality into this concept, in part because money is so key to the theory. I cannot imagine anyone funding the -call them brats? -in order to deflect attention/funding away from the ASD discussion. When we follow the money we often see an institutional self-preservation bias at work, with money coagulating at the top rather than filtering down to real applications (think of the many Agencies working with the Blind, eg, with an emphasis on sheltered workshops where crap is packaged, rather than preparing and facilitating inclusion in the workforce-at-large). As in my example, it is terribly sad when an organization with the goal of helping people actually holds them down.