Monday, April 27, 2009

Neurodiversitites bizarre responses to Elizabeth Svoboda

I see that the neurodiversity movement continues to get even more media attention with the latest article about them in Salon magazine by Elizabeth Svoboda. My pain and suffering naturally are ignored by the media as well as the far greater pain and suffering of persons much more severely autistic than myself such as Russell Rollens, Dov Shestack, Connor Doherty and John Belmonte-most of these individuals have an extremely poor prognosis and will probably have to spend their entire life in a group home or other type of institutional setting at some point. It is not likely they will ever be able to write about their suffering from autism in a blog post the way the ND's can. Svoboda talks about the comparisons that neurodiversity organizations such as Jim Sinclair's ANI make with curing autism to curing homosexuality or left-handedness. Autism is clearly a dysfunction or disorder, though these two conditions are not. Many neurodiversity proponents themselves try to have it both ways and claim that autism is really a disability. (though sometimes the definition of disability is different than some people might think-a social disability as opposed to a medical disability), though I don't think anyone would say that left-handedness or homosexuality are disabilities that impair a person's life.

So far this article has received 50 something responses from various readers. Some of these responders are of the neurodiversity movement. Once again, we see the same old tired cliches and completely disproven inane arguments that are so typical of neurodiversitites.

Here are some examples:

a person named D. Robert writes:

She forgets that the largest Autism-oriented societies not only ignore
so-called high-functioning autistics and peopls with Asperger's syndrome, they
actively seek to silence them. "Autism Speaks", for example, refuses to allow
any autistic person to speak; quite a funny situation

Assuming there really were a directive from autism speaks to stifle the voices of any autistic person alleged or otherwise, how can they possibly do this. Do they have the power to use mind altering drugs on any autistic person that criticizes them? Do they have complete control of the internet so they can delete the blog posts of "The autistic bitch from hell" who at one point made the absurd claim that they only thing on autism speak's agenda is developing a test for prenatal abortions. When autism's gadfly called this gal on the carpet, she even changed her statement from only thing on agenda to ultimate goal, substituting one absurdity for another. Considering all the anti autism speaks' rhetoric on the internet and at ASA national conferences that I have attended, Autism Speaks must be doing a very poor job of silencing these people if this were the case.

Neurodiversity Grand Dame Kathleen Seidel does not fail to weigh in:

The spectre of neurodiversity activists bent on "hampering children from
acquiring the skills they need to interact with the world" is a strawman.
Although there is certainly a wide range of opinion regarding the appropriate
means to go about educating and caring for autistic children, and regarding
the meaning and/or desirability of pursuing a goal of "cure" or
"indistinguishability," I know of no one opposed to providing autistic
children and adults with the services and supports they need to overcome
specific impediments and health problems, minimize maladaptive behavior, and
achieve their fullest potential and personal satisfaction.

Interesting thing about this statement, if anyone is producing a scarecrow it is Seidel. As far as I can tell she mostly writes criticisms of anti-vax and fringe treatment things which I concede may be commendable, but what does it do for any autistic child? How has anything Kathleen Seidel written or done helped any child with autism overcome any impediments, health problems, maladaptive behavior or achieve their full potential. Nothing. She offers no alternatives for research on genetics and neuroscience that will lead to prevention and cure of this devastating disability. So yeah, Kathleen Seidel (or Dave) if you happen to read this, it is total baloney, by buying the domain name and advocating this misguided philosophy you are undermining the efforts of parents, scientists and others who seek real answers, so you are hampering autistic children from making progress. If you have any alternatives to research for a cure or prevention to be blunt, I suggest you put up or shut up.

Someone who calls themselves "the kitti" offers these words of wisdom:

"We don't want to be cured, we want to be understood and given assistance"
does NOT equal "we want your kids to bang their heads on the floor and eat
their own shit forever."
I do not know of any neurodiversity advocate who endorses NO support or
special assistance for people on the autism spectrum, or doesn't want kids to
make progress in life. But by sinking so much money and energy into cure,
cure, cure, cure, cure -- what brain difference has anyone ever been able to
"cure," no matter how much people wanted it? -- it means that millions of us
are not getting the help we need, especially adults and lower-income parents.
And it's not just "high functioning" people who aren't interested in cure.
Check out Amanda Baggs' blog, Ballastexistenz. She argues passionately against
cure, and she is nonspeaking. The overwhelming obsession with "cure" is
tantamount to telling autistic kids the world would be a better place without
them. Do you really want to go there?

The notion of ND's not wanting kids to bang their heads on the floor and eat shit forever was addressed in my comment about Seidel.

The comments about Amanda Baggs are equally absurd. Baggs is not a low functioning autistic. Some have even alleged she is not autistic at all. She at one time, was able to speak quite normally, go to schools for gifted children and attend a college at age 14. Comparing her to Connor Doherty or John Belmonte, etc. is absurd.

Someone called silenced weighs in with the old Einstein Cliche:

On the other hand, we don't want to cure Einstein from being Einstein.
There's a lot of evidence to suggest that Einstein was on the spectrum. His
social limitations and inclinations towards mechanical objects and numbers
gave him the extreme focus and perseverance and immunity to social opinion and
even his own job prospects that he needed to do the work that he did.
We shouldn't try to over-cure high-functioning autistics or we could end up
with no Einsteins at all.

These are misrepresentations of ND's about Einstein that are par for the course. Einstein had few if any social limitations. He had numerous friends was married twice and after his second wife died had multiple extramarital trysts. For those who want to say that it was because Einstein was a famous scientist, one of these marriages occurred before that and in adolescence Einstein had a romantic relationship with Marie Wintler. The interested reader can read my article on the subject

Alex Plank/Wrong Planet squeeze Katie Miller also weighs in, giving a comment on Kristina Chew's blog:

In fact, we do so much work advocating for safe and helpful treatments and services. Why do people over-generalize? How can they call us mind-blind when they are the ones not listening to the words we explicitly say?

My dear Katie: I listen to the words NDs say all the time, the calling me Joseph Goeble's, my mother being called a witch, domineering. Being cussed out by David Andrews who has the gall to call himself a psychologist who helps autistic people. It is you who are mindblind my dear. You seem to think that safe and helpful treatments and services are talking about how offended you are by the ransom notes campaign, or by the nonmalicious use of the word "retard" in the movie tropic thunder. How these things are helpful, I don't know. I am still waiting for a single example of an ND person advocating for any services, treatments, etc. instead of starting cyberwars on the internet or taking the "you huht my widdle feelings" approach.

These sort of things are par for the course for the neurodiversitites. The same tired, cliched arguments that are so easy to refute. Andrew Solomon in his New York magazine article quoted Lenny Shafer as pleading to not write about ND or give it publicity. I respectfully disagree with Mr. Shafer. I say, do write about them, give them all the publicity in the world. They will use the same old tired cliches, people will see how ridiculous they are and they will look ludicrous and people won't take them seriously. However, I do wish they would write about me also and the other autistics who want to speak about the pain and suffering that this affliction has caused us and yet, unlike so many others on the spectrum are high functioning enough to do so.


David Rubin said...

It seems to me that we aught to remember that autism is a range, a spectrum. There are "aspies", who only appear strange, but need little or no medical help, treatment, or a "cure", but most autistics do need a lot of medical and other help. I'm also sure there are plenty of autistics like myself, who are perfectly intelligent and articulate, but still need some treatment.

Marius Filip said...

I've read your article on Gates, Einstein and Jefferson and, in the respect of the outlooks of Mr. Gates, I agree 100%.

Bill Gates does not have any form of autism. The so called autistic traits are common in computer geeks - which Bill Gates was once and retained a flavor of it up to his retirement. If Bill Gates is autistic, then all the programmers at Microsoft are autistics.

Bill Gates was an excellent strategic thinker in the computer industry. Many of his predictions fulfilled. Quite the contrary with the difficulties to conceptualize found in autism.

He knew how to work well with people. While quite demanding on others, it was not unspecific to him - it is rather the norm in that company. It is rather difficult for a person to be a manager without having a Theory of Mind - which the Asperger's seem to lack.

Bottom line, the presence of autistic traits of Bill Gates are unsubstantiated.

In one of the videos at the MIND institute, Temple Grandin said that an autistic person invented the stone spear - and not the social type of human.

While I agree that the spear was invented by someone more oriented to detail, I find equating social awkwardness with autism profoundly misleading. Autism is a brain disorder; being socially withdrawn does not necessarily require an abnormality of the brain.

I consider the arguments in favor of the autism of geniuses a way to shove the idea that autism is "neurological difference" and not a disorder through the back door.

That is, a political agenda through and through.

jonathan said...

Yes Marius, when Grandin claims the autistic person invented the spear she implies it is due to autistics having superior genes. She is quite confused about research on the genetics of autism or even the most rudimentary principles of genetics. For more you might want to read this article that I also wrote that clarifies this issue of autistics having superior genetics now that you have read my undiagnosing article. (shameless plug I know)

SM69 said...

A few points on this issue:

1- Asperger is classified in the DMS-IV and ICD-10 separately from autism. This is a separate condition requiring separate answers.
2- The diagnosis of AS and ASD are solely based on 3 main (and I’d like to say crude) behavioral features. Many unrelated conditions share these features. So, we don’t have just two conditions, but more still; separate individualities requiring separate and unique answers.
3- There is currently some sort of fashion regarding autism; association with genius like traits, enigmatic profiles, potential confusion with overlapping but distinct conditions like BPD (borderline personality disorder) and “fantasy diagnosis", like Bill Gates, and these tendencies lead to over-diagnosing in cases.
4- To assist someone’s development, health, insertion, socialization, communication is NOT about changing the person; it’s about empowering him or her, it is just the other way around. It’s like giving a stronger voice, increasing someone’s chance to succeed.
5- The answers for the ASD as a group are: health, happiness, self expression, independence, self-esteem, evenness of mood, inclusion and insertion. These are individual (not everyone has issues of health for example). If the person cannot express or make choice for self, reliable measurement of the above criteria must be made to guide support or justify of a non-intervention. If the person is able to make a choice, this should be respected, as long as it is compatible with the rest of the society (no harm, no insult, no attack etc, within normal expected citizenship, not self destructive, not self-injurious -until a law is passed to accept people to destroy themselves without anyone saying no to it.
6- People with autism should only chose for other autistic people based on reliable and measurable evaluation criteria, not on their beliefs of what is right for them.
7- The world does not revolve around the Asperger sun. The right balance should be found between them and the rest of the community. Not sufficient attention and attentive listening are given to other people on the spectrum.