Wednesday, November 11, 2009

Neurodiversity's Extremist Autism Cure Opponents - By What Right Do They Object?

The declaration has been made by celebrity "autists"or "autistics" like Michelle Dawson, Amanda Baggs, Ari Ne'eman and various Neurodiversity bloggers that ""We", persons with autism spectrum disorders, do not want to be cured".

These persons with mild autism spectrum disorders, including Aspergers, routinely declare that "autistics" do not want to be cured, should not be cured, and in fact can never be cured. Their implied claim to omniscience aside, by what right do these people purport to speak on behalf of other people's children, on behalf of people much more severely affected by autism disorders than they with whom they have little in common, and even on behalf of higher functioning autistic persons who oppose their ideological opposition to curing autism?

The same people who object to Autism Speaks, who turn out in massive droves of 5, 6 and even 7 people to protest at large Autism Speaks rallies of thousands of parents and autistic people, and who dwell in the lavish attention of CNN, the NYT, CBC, the New Yorker and other mainstream media outlets, demand the right to impose their ideological opposition to autism cure on my severely autistic son and the children of other people with autistic children. On what grounds do they claim this right?

Do I have the right to demand that Ari Ne'eman seek a cure for his very high functioning Aspergers? Do I have the right to tell Michelle Dawson who excelled in the challenging work environment at Canada Post, appeared as an "autistic" in the Supreme Court of Canada and before a Canadian Senate committee to oppose ABA for autistic children in Canada that she must seek a cure for her unspecified autism spectrum disorder? Do I have the right to tell Amanda Baggs, the author of many very sophisticated disability essays on autism and other medical conditions and the producer of videos depicting what she considers autistic stimming, that she must seek a cure for her autism spectrum disorder?

The answer, of course, is NO. And Ari, Michelle, Amanda and other ideological opponents of curing autism have no right to oppose or interfere with attempts by families, governments and society to cure their own autistic children or to cure those autistic adults like Jake Crosby and Jonathan Mitchell who seek cures for themselves.

I have a message for Ari, Amanda and Michelle: I do not seek to cure you of your Aspergers or high functioning autism disorders. Do not claim the right to speak on behalf of my severely autistic son. You have no right to interfere with efforts by me, or other parents, seeking to help or cure our autistic children. None at all.

Someday, hopefully, even if you do not, the dilettante autism journalists at the NYT, the CBC and other MSM outlets will come to understand that you are interfering with the basic rights of families and parents to help their own children.




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20 comments:

farmwifetwo said...

They don't want a cure (therapy - aba, speech, ot, floortime etc, medications, gene therapy etc) because they don't want to answer the question "If they can do it, why can't you". They don't like children like mine or others on the mild end of the scale that will be "normal" (independant - personally, professionally, financially). They don't want to answer why if the guy with Asperger's at NASA can do it, why can't they.

Sarah (Cat in a Dog's world) was griping about how ASAN doesn't have Autism Speaks $$$. Did Ari et al, think those with Asperger's and lives were going to all of a sudden embrace their inner autistic selves. Did they think they were going to get the $$$ from NASA, Microsoft, Google etc employees?? Why would you want to be "autistic" when you have a world at your fingertips??

I see they are turning out in droves to protest and those protests are getting major air time on the HUB.... 7 vs thousands... maybe they have the wrong message??

Stephanie Lynn Keil said...

I left this message at an ASAN blog about a protest about Autism Speaks:

"Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership."

There are no neurotypical parents of severely autistic children on the Board of Directors of ASAN. Why don't you ask Harold Doherty to be on the board of directors of ASAN? This is what your request about Autism Speaks equates to. ASAN and Autism Speaks have completely different goals so why would they want a very high-functioning Asperger's person who does not want a cure for autism on their board of directors? Frankly, I think you are wasting your time with this Autism Speaks stuff, but that is just my opinion. You should just say "ASAN does speak for me!" or whatever. I don't think you are going to infiltrate Autism Speaks very well.

I don't support Autism Speaks in any way but I don't think you are really helping autistic people with these protests. I honestly think it is a waste of time and that you should spend your time doing something more productive. There are plenty of autistic people (I am one of them) who have no friends and not much joy in their lives. Organize an event for them: autistic fun day (or whatever!) Then, if you so desire, tell them about your goals and ASAN. I think if you can prove you are positive people and parents see that their autistic children can be happy the will be inclined to believe you more. You (ASAN) make many people, especially parents of severely autistic children, angry. Perhaps prove that severely autistic children can be happy as they are and they will start to believe you. Your protests really do nothing, except make those who already agree with you feel good about what they have done.

But, of course, I don't know much about all of this. This is just my opinion."

Roger Kulp said...

farmwifetwo said...
They don't like children like mine or others on the mild end of the scale that will be "normal" (independant - personally, professionally, financially). They don't want to answer why if the guy with Asperger's at NASA can do it, why can't they.

Sarah (Cat in a Dog's world) was griping about how ASAN doesn't have Autism Speaks $$$. Did Ari et al, think those with Asperger's and lives were going to all of a sudden embrace their inner autistic selves.


Very valid point.People like Ne'eman, whose impairments are questionable to mild,and build their whole lives around palming themselves off as "autistic" or "disabled",seem to me to almost have a variation of munchausen,or somatization disorder.

Yet these are the same people who say any autistic who has been proven to have real medical problems that contribute to their autism has found a quack doctor,and a disreputable lab to fabricate results.

Foresam said...

We DO have, not only a right, but an obligation to "cure" these phony autistics. All it takes to "cure" these liars is to present the truth about them by matching their non-existent and feigned symptoms versus actual autistic people.

Their bogus presentation of "autism" coupled with their propaganda that alleges to fight for "autistic rights" is a psychological warfare ploy that exerts undue influence on young people with Asperger's. It works as a form of brainwashing to con these kids into believeing that going through life with mercury induced brain damage is a rational choice.

Lisa Jo Rudy said...

As you know, autism is a very, very broad term. Plenty of verbal, bright people are diagnosed with autism spectrum disorders by legitimate developmental pediatricians.

I don't see that Ne'eman or others involved with ASAN are "palming themselves off" as autistic. They almost certainly are legitimately diagnosable on the very broad spectrum. In addition many, including Dawson and Ne'eman, are in fact independent and capable - they're not asking for hand-outs.

IMHO, the issue is not that high functioning people are "faking it," but that the spectrum is far too broad. It would make everyone a lot happier, I think, if we had two, three, or many more diagnoses that did NOT encompass both profoundly disabled individuals AND people with "differences" that only peripherally impact their lives.

Lisa

Adrianna said...

I'm with Stephanie. If ASAN wants to convince the public, not the least those with severe autism and their loved ones, that ASAN CAN help them, they need to actually reach out to them. More importantly, they have to want to engage with them themselves. As it is, they act like the severely autistic don't exist and many of them demean such people.

I don't support Autism Speaks OR ASAN. I prefer to speak for myself because they say if you want something done right, do it yourself. But not everyone has a voice like I do.

Anonymous said...

"IMHO, the issue is not that high functioning people are "faking it," but that the spectrum is far too broad. It would make everyone a lot happier, I think, if we had two, three, or many more diagnoses that did NOT encompass both profoundly disabled individuals AND people with "differences" that only peripherally impact their lives."

Unfortunately, this probably isn't going to happen. In the DSM V "autism" will be one broad category with different levels of severity.

Roger Kulp said...

Lisa Jo Rudy said...
IMHO, the issue is not that high functioning people are "faking it," but that the spectrum is far too broad.


I think there a lot of people who would agree with this,unfortunately most of them saying this are not in the neurodiversity movement.Most of the ND types are those that flaunt their "autism" diagnosis as a their very identity the way Ne'eman does.

Should ASAN,or anybody else who pushes this "autism pride" garbage, come out and say things have gone too far,and those with the more mild disorders need to be reclassified as having something else,I might have some respect for them.

I have said it before,and I'll say it again,the whole "triad of impairment" model is a joke,and needs to be scrapped.I would like to see more realistic things like regression,developmental delay,and self-abuse as some of the main things needed for a diagnosis of ANYform of autism.

Socrates said...

Don't forget TIME, New Scientist and the BBC.

Perhaps we've something to say that's worth listening to.

Lisa Jo Rudy said...

Roger - of course, developmental delay is a major part of diagnosing autism in childhood. But why do you choose regression and self abuse specifically?

That would, I think, limit the definition of autism dramatically - which would then mean we'd need to develop diagnostic categories for "developmental delays and self-abuse withOUT regression," and "developmental delays and regression withOUT self abuse," and if a child ceased self-abusive behaviors he'd suddenly be in a new category (even if he had the same disabilities as before).

Personally, I think behaviors like "hits own head" or "bites own hand" are so likely to be outcomes of frustrations, physical pain, etc., that they're awfully hard to use as a diagnostic tool. In other words, my sense is that they're more often signs of some other issue than they are stand-alone symptoms.

Lisa

Anonymous said...

"Don't forget TIME, New Scientist and the BBC.

Perhaps we've something to say that's worth listening to."

No, you're just radical and capable of speaking. These organizations want positive (or "posautive") stories to publish that are so outlandish that people will flock to them so they will make a profit. Don't you know how journalism works, yet?

Autism Reality NB said...

Socrates

As an autism cure opponent do you think you have the right to interfere with my attempts to cure my son of his Autistic Disorder?

If so, on what grounds?

Laurie Mawlam said...

Eloquently put and exactly my own personal view.

Laurie Mawlam
Executive Director
Autism Canada

farmwifetwo said...

I have an 8yr old with Autistic Disorder. He's doing amazing. I take pride in every new accomplishment, from schooling, to social, to speach. He will always - short of a major miracle - be autistic and require support.

But what upsets me most is that ASAN thinks he should stay that way. WHY??

Also, if I can push a 10yr old who at 2.5 was dx'd with mild PDD. At 6 dx'd with "A mild form of autism spectrum disorder" verbally NLD w/ S/L delay. And teach him daily how to learn, how to grow, how to take part in extra-curricular activities to the point that at 10 he's pretty much indistiguishable (less some comments at time that are inappropriate but those NT kids... are no better) from his peers...

Why can't those parents with children with Asperger's do the same?? We had to go through being non-verbal, echolalia, etc. We had to deal with excessive behaviour and headbanging. We had to redo curriculum, go to tutors, go to speech therapists.... What's their excuse.

What about these adults with Aspergers... what's their excuse? The one's that have lives prove you can learn. Why use it as a club? B/c they certainly aren't lobbying for services, education, nor as Stephanie says are they interested in meeting a variety of autistics with a variety of views. They certainly are not interested in helping children become the best they can be. Instead they lobby against it daily with their rants against funding for research into cures and causes.

All they are interested in is themselves. Why? What do they stand for since it definately isn't those with autism, adult nor child.

Lisa Jo Rudy said...

I don't think anyone would advocate not educating, supporting, or providing tools so that a child (any child!) can succeed.

And I've never met anyone (including ASAN folks) who'd say "no speech therapy, no OT, no educational support."

That'd be like saying "your infant is perfect when he's born, no need to teach him anything!" Every kid, autistic or not, needs education, support and the tools to succeed.

I think the problem is that Autism speaks' "I Am Autism" video suggests that our families with autistic kids are under attack from an evil, intentional entity that wants us to divorce our spouses, bankrupt ourselves, and live a life of pain and misery...

And as everyone on this blog surely knows, neither autism nor any disorder is an entity... and no one can force you to break up with your spouse or otherwise make choices that undermine your life.

Lisa

Autism Reality NB said...

Lisa Jo the subject of this comment the basis by which autism cure opponents object to parents who seek to cure their own child's autism disorder. Please don't tell me that the ND "autism spectrum self advocates" don't try to interfere. It is none of their business whether someone else wants to cure their own children of their neurological disorders. If you can articulate an argument in support of their right to interfere with family relationships in this way I would be pleased to consider it.

Secondly, even education of autistic children is attacked by some of these individuals specifically ABA treatment/education which is maligned by Michelle Dawson, who intervened in the Supreme Court of Canada as an "autistic" to oppose parental efforts to obtain government provided ABA therapy for their children, has appeared before a Canadian Senate committee for the same purpose and has been granted numerous appearances on the CBC, French and English sides, to espouse her anti-ABA ideology.

Amanda Baggs has posted many anti-ABA comments on her blog site. To my knowledge NEITHER of these "autists" has ever had ANY exposure to ABA. Yet they oppose parents seeking ABA for their children.

Please tell me, if you can, what right these people have to interfere with parents seeking to obtain treatment OR education for their own children's autism disorders?

By what right do they interfere?

farmwifetwo said...

Actually Harold, somewhere, maybe even on their page, ASAN promotes the usage of ABA. This confuses me b/c they don't want to be "cured" but think this therapy is "ok", YET, at the same time saying "oh, just give them more supports". I don't think they have a clue actually.

Dawson claims she's not an autism advocate.... is that like saying their funding from AS has nothing to do with AS's message and that it's ok to take money from people who's "stance" you don't believe in??

Baggs I know little about so I can't comment about her views.

Lisa Jo Rudy said...

Harold, I agree: it's none of their damn business (or anyone else's) how you choose to treat or educate your child.

My point is that the video which has been the focus of neurodiverse publicity in recent days is, in fact, very problemmatic. So I see their point relative to the video.

In short, you're right. But there really is a bit more to the neurodiversity story than interference.

Lisa

Ian MacGregor said...

Last week? I was listening to an IACC meeting. The present subject was early interventions. Someone piped up, "We need to make sure they are appropriate." I cringed a little, but who wants inappropriate intervention. Then the same person added, 'They should be reviewed by someone from the autism community.".

Programs should be based on a proven record of efficacy and/or a showing of promise in trials.

Droopy said...

"[...]our families with autistic kids are under attack from an evil, intentional entity that wants us to divorce our spouses, bankrupt ourselves, and live a life of pain and misery[...]"

that phrase (intentionally taken out of context because this is exactly how it 'jumped out at' me and exactly what I thought when I read it):

You're right, that doesn't really describe Autism...

..but it sure does a bang up job of describing Neurodiversity