Tuesday, November 6, 2012

ASAN supporters think autism is awesome

The autism self-advocacy network is at it again demonstrating in Washington, D.C. against autism speaks. Their gripes are nothing new. They are pissed that there are no autistics on the board of autism speaks.  They are forgetting John Robison's appointment to their scientific advisory committee in spite of the fact he's a high school dropout with no knowledge of science.They are pissed that so much of autism speaks' money goes to scientific research and not to so-called community funded services.  Also, their claim (with no evidence whatsoever) that autism speaks primarily engages in "preventative research".  This is in spite of funding of brainwave studies and even the half million grant the Mottron group received to study how well autistics can find an embedded figure and other extremely useful projects such as the studies showing that autistics have different reactions to optical illusions than neurotypicals.

The above-linked article also lauds ASAN's efforts to find jobs for persons with autism.  I'm not sure what this is comprised of other than ASAN's partnership with Freddie Mac to help secure internships(which may or may not be paid employment) for extremely high functioning people with autism who live in the Washington, D.C. area.  Again, as I've mentioned in a previous blog post, it's interesting neurodiversity proponents would partner with a company that has cost the federal government about 170 billion bucks and probably was a major factor in creating the worst economy we've had since the great depression.

What was new was that some of ASAN's supporters were waving placards declaring that autism is awesome and that autistic people are perfect the way they are.

I'm not sure what is so awesome and perfect about being fired from multiple jobs, not being able to make a living, not being able to find a significant other, having motor coordination problems, and being a bedwetter as a child (as apparently a number of  persons on the spectrum seem to be from the traffic my post on bedwetting has received).  However, I have it good compared to most persons on the spectrum.  There are others who can't speak, who self-injure themselves, have intellectual impairments and die in accidental drownings and traffic deaths.  I'm not sure what is so great about autism.  I wish these ASAN supporters would be more specific.   It is quite clear to me what is bad about autism.  I don't see anything great or awesome about it. 

The article also quotes one ASAN supporter as stating:

The only people [who] can really speak to the autistic experience are autistic people. It is important that people understand what we want and need,”

Again, ASAN seems to want to speak for all autistic persons.  I wish they'd let me speak for myself at least once in a while.  

4 comments:

Anonymous said...

great post! So glad to see someone telling it like it is!

Roger Kulp said...

I have been a regular poster for years,at the Autism Research Institute's Yahoo! group.They are not only all about treating,or curing autism,but especially autism with complex medical problems,like the cerebral folate deficiency I was diagnosed with last year.

A while back,I let out all my pent up frustrations about how all you see representing autistic adults,are very high functioning types,with questionable diagnoses.People who have never had to deal with all the crap I have had to.The many regressions,the profound developmental delays,learning disabilities,motor apraxias,let alone all of the sickness I have had.

What I got in reply was,that in the 1990s,there was a sort of generational shift among parents of more seriously autistic children.That prior to that,parents locked away autistic children,who were anything worse than Asperger's in institutions,and later group homes,where nobody but staff and family will ever see them.

Basically these people will be in these homes until they die.I got all sorts of horror stories,both about the way adults are treated,and how difficult it is for families to get their relatives out of these places.The homes,as a rule,just see these people as a source of income,and continue to make money based on how many rooms they can fill up.Quality of life is not an issue.

Where is ASAN for these people?

I would love to hear the screamings about genocide,or robbing of your identity,if someone were to approach Ari Ne'eman,or ASAN,and talk to them about the different types of autism,cerebral folate deficiency being a prime example.that while not being cureable,can be managed,much the same way type 1 diabetes,or cerebral palsy can.All are autoimmune,by the way.

The verification word here is "ndsaps" how fitting.

jonathan said...

The verification word here is "ndsaps" how fitting.

ha ha! LOL!

Aaron Hosford said...

What if autism isn't the problem? What if autism is a symptom of other problems, which might need to be cured, but autism itself is just a different way to think? If a folate deficiency is an issue, fine, let's treat that. If someone can't communicate or can't cope with reality, let's treat that too. But if all of these problems and disabilities are treated or cured and the person is still autistic, let them stay that way. I am autistic and there is nothing wrong with me. I don't want to be treated, and I don't want to be judged or pitied. I am high functioning, and I'm perfectly ok with who I am and how I work. Why can't we separate autism, as a way of thinking/functioning, which is a legitimate part of who we are, from the disabilities that it sometimes accompanies?