Friday, February 12, 2016

Donvan and Zucker's bizarre take on the politics of autism

For the past few days, I've been a fan of John Donvan and Caren Zucker.  I read their book, "In a Different Key" with enthusiasm.  One of the best books on autism I'd read in a long time.  Last night, I saw them speak at UCLA.  I briefly chatted with John Donvan who thanked me for coming to see him and was flattered when he told he that he'd read my blog on numerous occasions. However they've written a take on what politicians should say about the a word that I find disillusioning.

They spoke about Hillary Clinton's mindless parroting about issues she ain't got a clue about.  I've  written about this previously

They tell politicians to avoid the cure word and listen to what neurodiversity has to say.  They claim that many autistic people are offended by this word.  But Donvan and Zucker don't seem to care, that neurodiversity is in reality a vocal minority who silence the voices of the true majority of those on the spectrum who can't speak for themselves or write a blog post refuting ND nonsense.  I remain an outspoken opponent of the neurodiversity movement.  There is no reason at all to listen to anything these people have to say and I hope they won't.  I don't believe that a small constituency should be listened to because it's the most expedient thing to do.   

Though I believe it's okay for politicians to say the cure word and say we should work for a cure, that they should use it sparingly.  A cure is not on the horizon in the foreseeable future.  Just as Clinton promised pie-in-the-sky in her policy directives that she has no understanding of, politicians should not promise an easy cure either.  I remember about eleven years ago, I was at an unlocking autism conference and a congressman said we'd work for a cure for autism and find it in our lifetime.  This was not much better or as bad as what Clinton did.  So politicians should not make easy promises on the things i'd like to have happen either.

While politicians may listen to neurodiversity because of the Ne'eman's family power and influence and the bullies who take of advantage of autistic people and their families who may not be functional enough or have the time or resources to refute them, I don't think any rational politician would use the word 'celebrate' to describe autism either.  So i'm not sure why Donvan and Zucker would admonish politicians not to use this term.

I agree that the vaccine argument has likely been refuted. Not so long ago, I suspect a majority of parents whose children had been diagnosed with autism believed it was due to vaccines.  That number is probably smaller now, but it's likely as sizable number as those who believe in the neurodiversity movement and no more on the fringe.  So I'm disappointed that Donvan and Zucker would tell people to listen to the neurodiversity movement and not listen to those who believe vaccines cause autism. Though I don't agree with the vaccine causes autism people, I believe at least they have good intentions and want to help their kids, unlike the hate mongers and mentally ill people who believe in neurodiversity.

Donald Trump has been a proponent of the idea of an autism epidemic and the possibility that vaccines cause autism.  One individual I know who believes vaccines cause autism has stated they planned to vote for Trump because they felt he was the only candidate who would adequately address the vaccine question.  Trump's position on an autism epidemic and the possibility of vaccines causing autism has certainly not hurt his poll numbers and the number of delegates he's received for the republican convention so far, so I don't think that Donvan and Zucker are correct about that. 

As far as seeking common ground and discord in the autism community over political disputes, that is inevitable.  I have no common ground with these individuals in the neurodiversity movement who have bullied me, insulted my mom, libeled me on the internet, and believe I should live my life as a cripple, even though most of them are higher functioning and less impaired than I am (and that's something considering I'm most likely on the milder end of the functioning level)  Donvan and Zucker are dreaming if rifts within the community are going to just go away.

The only point on which I partially agree (aside from politicians using the word cure sparingly and not making pie-in-the-sky promises) is we should not forget about autistic adults.  However, claiming there are easy solutions for housing and other programs when the country is in debt and tax dollars for resources is scarce is not realistic.  Claiming that there is some easy way that an autistic person can be trained for a job and not have workplace programs is indeed a grandiose promise.

Of course, one solution for helping provide services for autistic children would be to amend the CARES act, so the ADDM would be done away with.  This program costs millions of dollars which could go to services for people rather than generating meaningless prevalence numbers that don't accomplish anything.

 Not surprisingly, Donvan and Zucker also fail to discuss the issues of autistics being denied disability who can't work and the monthly disability checks not being enough for a church mouse to live on let alone a human being.

Unlike Donvan and Zucker, I hope politicians who don't have a clue about autism will STFU to be blunt.   There is no reason for Hillary or anyone else to listen to anything ASAN or any other neurodiversity organizations have to say.  There is no reason for her or any other politician to mindlessly parrot talking points they have no clue about.

In  probably every election since John Adams and Thomas Jefferson were running for president, there's been too much pandering to the populace to obtain votes rather than advocating for the right thing, not just in autism, but in all public policy issues.  I don't believe it's productive for these two authors to encourage this practice.  Up until now, I was an enthusiastic fan of Donvan and Zucker, but their most recent Washington Post article is disappointing indeed. 

5 comments:

Anonymous said...

Thank you.

......I'm Anonymous said...

Campaigning on finding a cure is a petard. Brain scientists don't even know how the brain works yet, we're still in the dark ages. Perhaps that was their point? Yes, a cure is what we want, but a cure is not likely to happen in anyone reading this lifetime's. The brain is damaged. It's not like a stint can be applied and the brain can heal itself. The brain is too complicated for the current state of our medicine. Science hasn't cured a single brain disorder yet. A cure should be the goal, but lets not pretend some politician can fund a cure, that's false hope for all the millions of parents/indviduals out there wishing for a cure. There is too much money involved for a cure for anything anymore.

Ray Rees said...

Really... really. Mitchell, do you know that a lot of AAC users and survivors of involuntary hospitalization support the neurodiversity movement, right? Unlike your claim that the Neurodiversity Movement and the Icarus/Mad Pride movements are all just Autistics and schizophrenics who are mild or self-identified, there are a lot more severely disabled (either in social model or in an impairment context) in the *anti*-cure movements than there are in the pro-cure movements.

Like, for one, Autism and schizophrenia aren't the only disabilities that have anti-cure movements. here are also obsessive–compulsive, ADHD, bipolar, Deaf, and cerebral palsy people who don't want cures either.

Also, one of the leaders of the Autistic anti-cure movement (Kassiane Sibley) has serious epilepsy.

I think it is pretty telling that not wanting a cure for your disability is considered a symptom of it. Epilepsy, diabetes mellitus, and insomnia don't have that as a symptom, but Autism, schizophrenia, and bipolar do. Funny that.

......I'm Anonymous said...

Ray, if they can use AAC, they don't have the most disabling forms of autism. You need to get your head out of your ass.

salpudy said...

Hello all. Getting one's head out of one's ass, (or arse, as they say over in the U.K., as in "you saved me arse, mate"--if they really say that these days)--without saying that anybody here has their head there, one would have to swim completely upstream, to get it out or keep it out, to be DIAMETRICALLY opposed to what's out there--I think "they" want our heads up you-know-where, because that makes US easier to control, whether we have Autism, or ADHD, or any of the other "invisible" disabilities that make us incapable, or unable to act, to do things in the way most people expect us to, or when we are still young and inexperienced, what we expect OURSELVES to be able to do--I'm old enough to remember, the days when we were told to "act normal" as that was considered the only viable option. I don't know what AAC is, if I ever did, I've forgotten it, and I'll stay out of there. As I've said before, I hate extremism in any form, whether it's from the so-called Neurodiversity movement, or something like Autism Speaks, which I don't think of as extremist, but there are people, either in blogs, or elsewhere, who have very strong "rhetoric", as it were. I think, once upon a time, Neurodiversity lived up to its name, and now, as with some of the Tea Party groups, seems to have became some kind of jingoism attitude,, or reverse prejudice, or a situation where the people with the most extreme views, think everybody else is worse than themselves, whether those people have a form of Autism, or something else; or so-called "normal"--they've basically hijacked the mike, as it were, and pretty much drowned everybody else out, or intimidated them into silence, or whatever. I was never involved in the Icarus/Mad Pride group or groups--I've read some of their stuff, if they have Schizophrenia, or Bi-Polar, both of which seem to be possibly common diagnoses, for people at the "milder" end of the Autism spectrum, especially women, they are probably the OPPOSITE to me in functioning, and possibly character as well; they can "read" people; I can't. Some of them are kind and some are mean-spirited and use their skills, to hurt people.
I just don't know. I would NEVER claim myself as non-disabled, as I receive an SSI check every month--thank God. To me, somebody who does that, and than says they aren't disabled, is trying to have it both ways.