Saturday, July 14, 2007

Neurodiversity's Ten Autism Commandments

1. Thou shall not call autism disorder a disorder.
2. Thou shall not seek to treat or cure thy autistic child for if you do you shall forever be known in the records as a "curebie".
3. Thou shall not conduct research into environmental causes of autism.
4. Thou shall not conduct research into the genetic nature of autism.
5. Thou shall not abuse thy autistic child by exposure to Applied Behavior Analysis or any other such evidence based effective autism interventions with which Satan, or Lovaas, may tempt ye.
6. Thou shall speak no evil, make negative comments or say bad stuff of autism.
7. Thou shall have no researchers before Mottron and Gernsbacher unless they conduct experiments in such a way as to prove that autism intelligence is really superior intelligence.
8. Thou shall make no mention of autistic youths and adults living in institutional care.
9. Thou shall not lay down with evil or watch the "Autism Every Day" video.
10. Thou shall repent for all thy NT sins.

5 comments:

mcewen said...

It's so tempting though don't you think? The 'superior intelligence' bit! I think that's why autistic savants receive such a huge press coverage as it's just so fascinating to us [me] lesser mortals.
Cheers

Autism Reality NB said...

The existence of savants is well known and not in dispute. There are also, beyond doubt, a great number of highly intelligent persons with Asperger's. Although thei intellectual abilities might be offset by their autistic deficits.

I have no doubt it is fascinating stuff for press coverage but my concern is that it simply obscures the reality that many persons with autism disorder, particularly classic and severe Autism Disorder, will face in life.

When is the last time Dr. Gupta, Anderson Cooper, Sigourney Weaver, Laurent Mottron, Morton Ann Gernsbacher or anyone else from the media, entertainment or academic world actually visited severely autistic adults or youths living in institutional care and reported on their conditions in life?

Please don't tell me that Amanda Baggs, who is a far better writer than I am, has the same intellectual and communication deficits as these people - or as my son.

Creating the erroneous impression that all is well, that autistics may generally be of greater intelligence than the norm, does a disservice to those less fortunate autistic persons.

Steve D said...

Mr. Doherty, your narrow-mindedness is astounding. Once you made the decision that the ND crowd was collectively "wrong", you just continue to bash away at some generally good people.

For example - you state that "Thou shall not abuse thy autistic child by exposure to Applied Behavior Analysis or any other such evidence based effective autism interventions with which Satan, or Lovaas, may tempt ye." In the meantime I and numerous other parent bloggers have openly stated on our blogs that we do utilize ABA for our kids.
I personally think you are missing the point of Neurodiversity entirely. You are perceiving an overly positive attitude towards autism that minimizes the importance of research into causes and cures. In actuality, what I have always taken away from it is the importance of emphasizing the person over the disability. This is what I think the autistic bloggers are referring to, and this is what I have seen the parent and professional bloggers respond to.
By utilizing your hit-and-run tactics on blogs such as mine, you succeed only in emphasizing your disapproval of the ND view, without providing anyone the motivation to learn more about what you feel is the most important approach to the issues.

Many of us are open-minded, Mr. Doherty, and welcome reasoned debate of any of the issues revolving around autism.

By reading your posts over time, I do understand that you see your son as a person first - I hope you can acknowledge that this is not the case with many parents and that we all have an obligation to speak out when we see this type of attitude prevail.

Can you honestly accuse "ND" as a whole, when it includes such people as Club 166, Kristina Chew, Dad of Cameron, Andrea (of Andrea's Buzzing about...), Joel Smith, and McEwen? Do we really seem that homogenous to you?

Your staunch support of ABA as "evidence-based" treatment suffers from numerous studies which cast doubt on the method's efficacy. I am at this moment looking at a very good study titled "A Perspective on the Research Literature Related to Early Intensive Behavioral Intervention (Lovaas) for Young Children with Autism" by Victoria Shea in 2004.
The conclusion begins with: "It is time for advocates and professionals to stop citing the figure of 47 percent and the concepts of 'normal functioning', being 'indistinguishable from average children', and having 'recovered' from autism." This, Mr. Doherty, is a person who has probably never heard of the ND philosophy. I attended a conference last week in San Diego that inclided this study in its handouts - the presenters had never heard of the Autism Hub (until, of course, I mentioned it). In other words, doubting the efficacy of any given treatment is not the sole province of any given autism group - none of us really know what works or doesn't, do we?

I regret that people like me - good people who love their kids and do whatever it takes to ensure a good life for them - cause you so much consternation. Regrettable, but unavoidable, I'm afraid.

Lastly, I want you to know that I am more than willing to continue this "conversation" by private email.

Autism Reality NB said...

steve d

Thank you for offering your perspective on Neurodiversity, ABA and me.

With respect to ABA I did not create the expresson evidence based which yo appear to mock or at least question. There are hundreds of studies confirming the efficacy of ABA in helping autistic make real gains. In my son's case it provided us with a means of communicating with him a gift that is greater for me than winning a major lottery. The expression evidence based, as I am sure you know, is offered to designate levels of evidence to support a treatment. State and national agencies across the US, Canada and the UK have described ABA as an effective evidence based intervention for autism, including the US Surgeon General, state agencies in Maine, NY, California, the Association for Science in Autism Treatment and a UK agency which I have recently published on this blog site. Hundreds of Ph D and MD experts in autism used the evidence based designation to describe ABA as an effective ABA intervention.

You paint a very rosy picture of Neurodiversity. The reality is not quite so pretty. Neurodiversity advocates have actively campaigned against government funding of ABA for autistic children in Canada, even some ND advocates who don't live in Canada have done so. ND advocates regularly mock and ridicule parents who are seeking nothing more than to help their own children. Even you in your post could not resist the temptation to attack me personally rather than stick to what you perceive to be the issues.

As for your hit and run allegation, I post on other internet sites from to time, sometimes the owners of those sites publish my comments sometimes they do not. I also work for a living and paricipate in my family life. I do not necessarily scan the internet for responses to posts I have made. With many ND sites there can be no end to the dialogue because I would never be permitted to have the last word. So I don't really understand your issue on this point.

As for a narrow mind set I speak openly and fully about autism including my sons. My son is a great joy to me but his autism is not. The attempt by Neurodiversity advocates to insist that autism is simply another variation of the human condition and not a disorder is simply wrong.

The attacks made on parents who speak openly about the realities of autism is simply an attempt to censor and to hide some of the ugly realities of autism from the world. There are autistic people living in institutional care steve d. There are autistic children who injure themselves through self aggression and obsessive self starvation eating habits. My son has grabbed my arm and head while I was driving our family car. Should I not tell the world of such behavior because steve d and the Neurodiversity movement feel hat it portrays autism in a negative light?

Narrow minded? Thank you for your assessment steve d. I will give it due weight and consideration. In the meantime maybe you can take off your rose colored glasses and look at the whole autism picture not just what you want to see.

Navi said...

hmmm,

I think some Neurodiversity advocates may follow your 'commandments' but I think they're mostly misunderstood. Most Neurodiversity advocates I've read have no problem with treatment, but they'd rather it viewed as a way to help a person with autism, rather than a way to fix a person with autism. I've seen a lot of good posts on this blog, I count this as an unfortunate post.

There are also some advocates that are concerned that the amount of attention Autism is getting pulls money away from other, more serious childhood disorders. Or are concerned money is being funneled into the wrong areas, rather than genuine research.

Frankly, I've grown tired of reading some of the stuff on both sides.

I'd love to find an organization that pushes treatment, but not cures. However most of those that are anti-cure focus on advocacy and awareness, rather than treatment. While this is important, I want treatment resources that aren't cure oriented. It's overwhelming to go through the amount of data and figure out how much of it is relevant, and how much hogwash.

I see things that my son needs to improve on, that are caused by his autism, and things about him that are truly beautiful, that are caused by his autism. (he's not verbal, and is in diapers, and goes to a special school for autistic children, so I am not a parent of a high functioning child, who doesn't understand how difficult it is, or a parent who doesn't think he needs any treatment)

From what I've read, ABA is evidenced based, and has been extremely beneficial to many - and to others it does more harm than good (and because of that insurance doesn't always pay for it, at least not here in the States) However, most other treatments aren't 'evidence based' and there have not been many reliable studies to steer them in that direction.

The autism debate is way to politicized, in my opinion.