I want to take the opportunity today to thank the many Neurodiversity visitors that I have received on this blog site since it began 15 months ago. Neurodiversity is a very loose and somewhat fractured group or persons, largely internet commentators, who are opposed to efforts to cure or treat autism. And they have often criticized me specifically and other parent autism advocates seeking to help their autistic children.
Even within Neurodiversity groups there is a significant divide between those ND members who acknowledge that autism is in fact a disability that restricts to one extent or another the lives of persons with autism and those who feel that autism is just another natural, in some ways superior, variation of the human condition. There are arguments over whether it is appropriate to use expressions like "persons with autism" as opposed to "autistic persons". Some argue that it is inappropriate to refer to autistic persons by common sense expression like "low functioning" or "severely autistic". It is not clear how they would have us distinguish between people like my 11 year old son who has limited communication ability and limited understanding of everyday realities - and dangers - and those autistic persons, some self diagnosed, or diagnosed as adults, who write complex internet essays, testify before government bodies and court proceedings. But then their focus lies not with helping less fortunate autistic persons achieve positive gains in intellect, communication, knowledge, writing or understanding.
To the contrary, what unites all members of the "Neurodiversity" movement is their opposition to attempts to treat or cure OTHER autistic persons, including autistic children. I have capitalized OTHER for a reason. No one is forcing adult autistic persons to undergo treatment. What unites the ND ideologues is their determined opposition to any realistic effort to help other peoples' autistic children. They can dress it up any way the want but the truth is that ND ideologues oppose ABA for autistic children; other peoples' children. ABA is an evidence based intervention demonstrated by the quantity and quality of evidence over five decades of research to be effective in helping autistic children make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.
(Italicized Portion from American Academy of Pedatrics; Management of Children With Autism Spectrum Disorders, 2007)
What unites the ND group is their opposition to the only method demonstrated to produce substantial, sustained gains in IQ, language, academic performance, adaptive behavior and some measures of social behavior for autistic children. This is what ABA has been documented by decades of research to offer autistic children . This is what ND icons like Michelle Dawson and Laurent Mottron opposed before the Supreme Court of Canada and the Canadian Senate. And what would these good citizens have parents do instead of helping their autistic children realize these gains through ABA? They want us to wait another generation, literally, to see how further studies turn out comparing ABA to other interventions with little or no evidence basis of efficacy.
So WHY do I thank ND ideologues for visiting my blog site? Because when they do, when they write their "Harold Doherty says" and "Harold Doherty believes" etc. comments on their web sites they actually encourage their followers to visit this site. And if even ONE Neurodiversity believing parent visits this site, comes to learn what ABA can do for their autistic child, and is able to realize these gains for their child, then it will all be worth it. For that reason I would like to thank Michelle Dawson, Estee Klar-Wolfond, "Joseph", "Steve D", Kev Leitch and Mike Stanton. Contrary to your best efforts you might have actually helped some parents realize the truth about ABA and the benefits it can offer their children.
autism
Even within Neurodiversity groups there is a significant divide between those ND members who acknowledge that autism is in fact a disability that restricts to one extent or another the lives of persons with autism and those who feel that autism is just another natural, in some ways superior, variation of the human condition. There are arguments over whether it is appropriate to use expressions like "persons with autism" as opposed to "autistic persons". Some argue that it is inappropriate to refer to autistic persons by common sense expression like "low functioning" or "severely autistic". It is not clear how they would have us distinguish between people like my 11 year old son who has limited communication ability and limited understanding of everyday realities - and dangers - and those autistic persons, some self diagnosed, or diagnosed as adults, who write complex internet essays, testify before government bodies and court proceedings. But then their focus lies not with helping less fortunate autistic persons achieve positive gains in intellect, communication, knowledge, writing or understanding.
To the contrary, what unites all members of the "Neurodiversity" movement is their opposition to attempts to treat or cure OTHER autistic persons, including autistic children. I have capitalized OTHER for a reason. No one is forcing adult autistic persons to undergo treatment. What unites the ND ideologues is their determined opposition to any realistic effort to help other peoples' autistic children. They can dress it up any way the want but the truth is that ND ideologues oppose ABA for autistic children; other peoples' children. ABA is an evidence based intervention demonstrated by the quantity and quality of evidence over five decades of research to be effective in helping autistic children make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.
(Italicized Portion from American Academy of Pedatrics; Management of Children With Autism Spectrum Disorders, 2007)
What unites the ND group is their opposition to the only method demonstrated to produce substantial, sustained gains in IQ, language, academic performance, adaptive behavior and some measures of social behavior for autistic children. This is what ABA has been documented by decades of research to offer autistic children . This is what ND icons like Michelle Dawson and Laurent Mottron opposed before the Supreme Court of Canada and the Canadian Senate. And what would these good citizens have parents do instead of helping their autistic children realize these gains through ABA? They want us to wait another generation, literally, to see how further studies turn out comparing ABA to other interventions with little or no evidence basis of efficacy.
So WHY do I thank ND ideologues for visiting my blog site? Because when they do, when they write their "Harold Doherty says" and "Harold Doherty believes" etc. comments on their web sites they actually encourage their followers to visit this site. And if even ONE Neurodiversity believing parent visits this site, comes to learn what ABA can do for their autistic child, and is able to realize these gains for their child, then it will all be worth it. For that reason I would like to thank Michelle Dawson, Estee Klar-Wolfond, "Joseph", "Steve D", Kev Leitch and Mike Stanton. Contrary to your best efforts you might have actually helped some parents realize the truth about ABA and the benefits it can offer their children.
autism
I'm using my son's computer, so this is Ralph Savarese speaking. Why must you say, "What unites ALL ND proponents..."? If you'd read my responses to some of your comments, including the one where you demeaned my son's appearance on CNN (see the autismvox blog), you'd have to acknowledge that many of us do not buy into your simple binary about treating autism--either do it or don't. When DJ told Sanjay Gupta that autism should be "treated with respect," he did not mean respect only. As the show itself made clear, DJ takes medicine for anxiety, has had a whole host of therapies, perhaps the most important of which has been LITERACY TRAINING. Because you cling to the "high functioning/low functioning" dichotomy you simply can't make sense of the many like DJ who cannot speak, have significant anxiety, perseverate frequently, AND YET do well in school, have friends, write chapters in books, etc. Finally, if you'd read my response, you'd see that I carefully managed my tone, beginning, "I do not wish to demean you, but..." However offended you may feel by some ND proponents, why not model generous, civil behavior? You pride yourself on your intellect. Make distinctions, then; clarify; qualify. Be responsible.
ReplyDeleteRalph Savarese, PhD
Thank you for visiting my site Mr. Savarese.
ReplyDeleteAs for demeaning your son I have no idea what you are talking about.
As for "clinging" to a dichotomy that is your hang up, not mine. I advocate for services for all autistic persons in my area high functioning or low functioning. I have provided legal services, on a pro bono basis, to families with some Asperger's kids who had encountered legal difficulties arising directly from their condition.
I have also been part of a GROUP which has advocated, successfully, for funded early intervention by trained Autism Support workers for pre-school autistic children, advocates successfully for reinstatement of a tertiary care treatment team for autistic children in our area, advocated successfully for autism trained Teacher Aides and Resource teachers for autistic children in our schools and advocated successfully for modified learning environment within an inclusive school setting. We are currently working diligently to revamp our residential care and treatment facilities for those autistic youths and adults, and there are many, who require assisted living of varying degrees.
I like to make sure that people understand what constitutes evidence based interventions for autism. Not based on my opinion. Based on the opinion of the numerous respected agencies from the recent American Academy of Pediatrics reports to the MADSEC, New York and California reports, to the Office of the US Surgeon General and the Association of Science in Autism Treatment.
I also try to make sure that parents of newly diagnosed autistic children do not fall for a bogus strategy of hoping for the best; that they understand the need to get help for their chidlren, real help, from professionals, real help, based on evidence based proven effectiveness.
I don't think, after reading your letter, that I need any lessons in courtesy from you. And I only hope that I never develop your tendency to assume that you know everything that other people are thinking or feeling.
I am not in the least offended by the Neurodivesity ideologues. I do not think their perspective is helpful for autistic children or adults. Surely Ralph Savarese PhD can tolerate my difference of opinion?
Do you not recall on Kristina Chew's blog making fun of my son's remark to the CNN reporter? Well, here it is. Your very name is on it (see below or go directly to Ms. Chew's blog from about six days ago). Maybe seeing your remark and the way it misconstrues my son's response will allow your readers to understand where I'm coming from. My response to you on that blog follows your post. I DO want us all to be civil and I do want you to understand that one can believe in neurodiversity WHILE attending to the challenges of autism. --R.S.
ReplyDelete*****
Harold L Doherty
Nov 20, 2007 at 4:02 am
"Wow. All that money spent trying to help those autistic children and adults with serious intellectual, communication and behavior deficits, including dangerous self injurious behavior, and all that was needed was a few soothing words from DJ Savarese.
Do you have a video of Saverese’s comments so I can play those words for my autistic son and help him overcome his serious autism deficits?"
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Ralph Savarese
Nov 20, 2007 at 12:32 pm
Let me offer some context for my son’s remark–I don’t want to demean you, Mr. Doherty, but I do want to take you to task for your tone. This was a boy who was abandoned, beaten horrifically, and sexually abused (tortured really). He worked like crazy to trust the world again, to allow us to help him learn how to read, and then to point, and then to type. He’s overcome his profound mental retardation label; he’s starting to feel ok about himself. When he was raped, his attacker told him over and over again during the act, “You’re fucking freaky.” I remember the time he told me on father’s day, “Dad, thanks for not thinking I’m freaky.” This is what DJ means when he says, “Treated with respect.” But as another commentator noted, it’s not simply about respect (though that’s a perfect starting point); it’s about, at least for some kids, medicine; OT, sensory integration, literacy training. You name it. –Ralph Savarese
Actually I had not seen your follow up post at Ms Chew's site. And I had thought the comment was by YOU not by your son. What I was commenting on was Ms Chew's use of words which I thought uttered by you as some sort of response to the very serious issues confronting severely autistic persons and their families.
ReplyDeleteThe context you supplied later was not part of the post on which I commented. While the tone would have been different had I known it was your son, whose computer you are now using, the substance of the remark would not have been any different.
Parents across the world are struggling to help their autistic children, some with dangerous behavior, some who will live out their days in the care of others with limited understanding of the world.
Lecturing people to accept their children as they are does not bring the services and assistance that these families need to help their children. I don't believe parents need such lectures and I suspect most find them insulting.
As for Neurodiversity, frankly it seems to be splintering, with some still maintaining that it is not a disability while other ND advocates acknowledge it is a disability.
Still, however, ND advocates argue vehemently against the notion of curing autism. Hence the derogatory term "curebies" used to refer to parents trying to help their children. If you dispute this point I would be happy to provide you with some links.
I didn't list the efforts with which I have been involved for the point of bragging. It is to illustrate what I believe is important, real services that actually help. Not unnecessary lectures telling us to embrace our children or to respect them.
And to return to your son, there are other examples of children who have moved beyond a diagnosis of mentally retarded, or intellectually deficient etc. That does not mean that all, or even most will, or can, particularly without the appropriate interventions.
To Steve D
ReplyDeleteYour comment was rejected.