Saturday, August 14, 2010

I No Longer Hear My Autistic Son's Voice When Autism Speaks

I  was once very impressed with Autism Speaks. My son Conor, with Autistic Disorder, severely autistic,   wore an Autism Speaks cap and my vehicle had an Autism speaks sticker near my licence plate. In the ongoing struggle by parents pushing for a cure for autism disorders Autism Speaks was a powerful voice.  It now looks, increasingly, as though Autism Speaks has become at best a professional charity seeking to placate all without any consideration given to its guiding principles and how they are impacted by some of those they embrace with open arms.   

Two of those with whom Autism Speaks engages are Jon Elder Robison and Alex Plank both of whom oppose the concept of curing autism which is, in theory, one of Autism Speaks guiding principles. Mr. Robison to his credit is generally polite, if disdainful about curing autism. Mr. Plank however hosts a forum, Wrong Planet, in which anything goes in attacking people seeking to cure autism. 

Parents seeking to help their autistic children, particularly parents of severely autistic children, should begin reconsidering their support for Autism Speaks. Alex Plank and Jon Elder Robison, two very high functioning persons with Aspergers are the new voices of Autism Speaks? The Wrong Planet hosted by Mr. Plank posts offensive remarks about parents and those seeking cures. It recently posted comments that were depraved and disrespectful concerning the passing of Dr. Ivar Lovaas who did so much to help autistic children. Following is a capture of and a link to some of the  disgusting commentary from Mr Plank's Wrong Planet on the death of Dr. Lovaas:


This father of a 14 year old son , severely affected by Autistic Disorder,  no longer hears his voice when Autism Speaks.

19 comments:

Claire said...

What an appalling thing to put up. So disrespectful of family and friends. Whether or not one agrees with someone's views, this is completely unacceptable behaviour. It is, however, what I have come to expect from most in the neurodiversity crowd, which is why it is impossible to take these people seriously.

Autism Mom Rising said...

I've always given Autism Speaks a lot of credit, even as others held criticism for them. The genetic research is important too. If they don't want to do the environmental research then maybe another org needs to crop up and do that. There is room for multiple orgs, each taking its own angle. With that said, if large amounts of money startes going from AS to individuals who are against AS's stated mission then I'd have to wonder if it has lost it's mission and is morphing into something other than it's original intent.

John Elder Robison said...

I'm not sure what you believe a random offensive forum post from Wrong Planet has to do with me.

I know that you like to portray me as "anti cure," but I have told you time and again that I fully support the development of ways to remediate autistic disability. The fact that I do not call that a "cure" seems to trouble you to no end, even though I believe I want to help people like your son just as you do.

Anonymous said...

I have never and will never donate to this organziation. The money goes right in the pockets of the sleazy employees. Any parent who thinks Autism Speaks will help their kids in any shape or form is pathetic.

Autism Reality NB said...

Mr Robison there is nothing random about the title of that discussion topic which expressed joy at news of Dr. Lovaas' death with exclamation marks and smile symbols followed by the very offensive first post in that thread. While the post may have been extreme even by WP standards offensive, derogatory remarks about parents and professionals seeking autism cures are par for the course.

As for your views about curing autism I don't know why you associate yourself with Autism Speaks which is supposedly seeking to cure autism disorders. I have a son with Autistic Disorder, he is severely affected. He will never be a successful businessman, author or rock band musician. He will live in a state of dependency because he can not function at very basic levels.

Perhaps you could explain why you as an obviously intelligent person with excellent communication skills and business savvy, so barely affected by Aspergers, opposes cures for my son and others with severe Autistic Disorders?

John Elder Robison said...

What's random is your choice of that Wrong Planet post in a story relating to me. I have nothing whatsoever to do with it.

As to "opposing" cures for your son . . . I am afraid you just don't get my choice of words, or something else. I have said more than once than I am actively working to promote research that may help your son and other people with significant autistic impairment. There is no dispute about that in what I write.

What's in dispute is whether "help remediating his disabilities" constitutes a "cure." I don't think it does, but you can call that kind of help what you want. If you want to be critical of my views on research may I suggest you pick a specific topic of study, and we'll discuss my views on that. The word "cure" is clearly fraught with many differing interpretations.

Anonymous said...

John Elder Robison
One thing is to disagree on method and out come for the cure for autism. That post was made by ignorant selfish, drama queen only intersted on his/her opinion reputation and cares less for anybody else. John Elder Robison you have said such post does not have anything to do with you. But you have not said your agaisnt such a statement, repudiate and that it actually does more harm then good. The more specific you are in condoning that post the better it would be.

AutisticWisdom said...

I have mixed feeling on Autism Speaks. On the one hand, Alanna's early diagnosis can be credited to Autism Speaks' video library. We used that convince others she had autism and it gave us the courage to seek a psychologist. On the other hand, Autism Speaks takes a lot of fundraising dollars away from local autism societies, like Autism Ontario, that tend to support programs within their communities. Autism Speaks dollars seem to go to the U.S. and then funnel themselves off to researchers. I don't see much of those dollars staying in local communities.

jonathan said...

I wonder if John Robison is willing to explain the fact he said in his book that no cure was needed for Asperger's, even for others who are far more affected by him, he won't ever have high paying jobs, get married, write a book that appears on the New York Times bestseller list.

I wonder if he can explain how his urging autism speaks to finance the videos of Alex Plank and his son Jack helps anyone at all on the autism spectrum besides his son and Plank.

I wonder if he can explain why when he is wealthy why he himself could not pick up the tab for these videos' underwriting costs rather than going hat in hand to autism speaks. Particularly when his own son is one of the principals involved and going out of his jurisdiction of being on the science advisory board claiming he wanted to serve autism speaks in a capacity that scientific research can be done to help ameliorating the more debilitating aspects of autism in spite of opposing a cure for all with asperger's (and possibly other ASD's) in his book.

This was not just one random post, but multiple offensive posts that come from wrongplanet where persons who wish for a cure for autism are mocked and ridiculed. We can certainly judge Alex Plank and Robison jr. and Robison sr. by the company they keep.

Anonymous said...

Mr. Robinson-let me just say it sickens me that you claim to represent "autism." You do not represent my child and the fact that you are married, highly verbal and lead a relatively normal life in no way represents or will ever represent the majority of children on the spectrum. All you seem to do is advertise yourself and try to make money on speaking engagements and book deals. Parents who fall for you are fools and in denial, plain and simple.

Anonymous said...

John Elder Robinson is a man who desperate parents latch onto hoping their kid will turn out just like him. Well, being the man is barely on the spectrum (if at all) I highly doubt this is going to happen for truly autistic children.

Making money off the parents who are desperate aren't ya' John? Kim Stagliano, Jess Wilson, Kyra..all examples of the desperate mommy followers. I really feel for them and their blindness.

Lisa Jo Rudy said...

Autism Speaks is now including a couple of adults with autism spectrum disorders among its spokespeople. Members of the autism community, me included, have been asking for that for many years.

Obviously, no one can be a spokesperson without the ability to use spoken or written words - which means, by definition, that a "spokesperson" must be either verbal or able to express himself with spoken language.

Perhaps AS will add additional people on the spectrum who are non-verbal but able to communicate through keyboards or other means - thus expanding the representation of people with autism.

Till then, while I understand that the individual post on Alex's site is offensive, I really wouldn't let that influence your feelings about the research and programs provided by AS. I honestly think one thing has nothing to do with the other.

On the other hand, if you don't like AS's overall approach or philosophy, that's another matter altogether.

Lisa

Anonymous said...

Really Lisa? So unless a person with autism is high functioning or Asperger's they have no right to be represented as a "spokesperson" for the disability? Really? Well here's a newsflash Lisa. The majority of kids on the spectrum are fairly severe, unlike your son or people like Robinson. I wish people like you, Robinson and all others spouting your views all over the internet would just go away. You are quite frankly very clueless about the disability as a whole.

Autism Reality NB said...
This comment has been removed by the author.
Autism Reality NB said...

Lisa, thank you for your comment but I respectfully disagree with your positions including your misunderstanding of my position.

I have nothing against persons who are on the "spectrum" being members of of autism advocacy organizations. I have stated several times here and elsewhere on the web that I have worked with a very intelligent and capable gentleman with Aspergers here in NB.

Mr. Robison is polite in his comments but he is still dismissive of the idea of curing autism as is Mr. Plank who is not so polite. That is the primary issue I have with Autism Speaks providing either of them with greater prominence than they already have. Their positions are contrary to the stated cure goals of AS.

Autism Speaks commitment to finding causes and cures for autism has been oft stated but there are many including me who doubt the strength of that commitment. AS has, for the most part, conducted its research on genetics with very little on environmental factors which might cause or trigger autism. This is not changed by the recent Autism Speaks Press Release which was a pre-emptive bid to position itself on environmental issues the day of the recent US Senate hearing on autism & environmental issues. AS has even funded research by anti-ABA, anti-autism cure researchers Michelle Dawson and Dr. Laurent Mottron.

Many severely autistic persons can not communicate themselves. As the father of a severely autistic son I am well aware of that fact. They are still represented in law by their parents or other legal guardians who can speak on their behalf. Their realities should be featured in the efforts and presentations of Autism Speaks. When AS paints a picture of "autism" for the world it should include and not hide the autism of those severely affected with Autistic Disorder.

I have agreed with Autism Speaks STATED GOALS since its inception and have appreciated its media and world wide autism awareness accomplishments. But I will not ignore the fact that at present Autism Speaks is giving prominence to two individuals Robison and Plank who oppose curing autism, one of whom, Plank, hosts a forum where scurrilous and offensive comments are routinely made about those seeking autism cause and cure including the disgusting comments made about Dr. Lovaas a man who actually helped so many autistic children.

Reaching out is fine. Abandoning core principles while doing so is not. IMHO Autism Speaks must do more to convince those who support it that it is seriously committed to finding causes of, and cures for, autism disorders, that it is more than just a self sustaining charitable bureaucracy willing to pander to those who oppose its very existence and core organizational goals.

Anonymous said...

I suspect the comment you deleted was mine .. regarding the excessively high salaries of Autism Speaks EMPLOYEES.

If so .. can you possible contact me at rmoffi@aol.com so I can learn why my comments offended you so?

Thanks

BOB MOFFITT

Kent Adams said...

Harold,

I wonder why Autism Speaks doesn't employ Sue Rubin?She seems to me a better representative for their mission goals.

Autism Reality NB said...

Bob Moffit: "I suspect the comment you deleted was mine .. regarding the excessively high salaries of Autism Speaks EMPLOYEES."

You suspicions are wrong Bob.

The comment I deleted was my own in reply to Lisa Jo. When I first published it there was an obvious grammatical error resulting from a sloppy text revision. I spotted the error once posted so I deleted it and re-posted it with the correction.

Anonymous said...

Autism Speaks awareness, i am sure, has helped the autism cause but the millions spent on the elusive genes does not help our children who have severe autism today. These children are growing up and many have already "grown out" of the system. They need something to do and somewhere to go after age 22. Autism Speaks can turn some of their contributions to help fund autism cummunities where even the most severe cases can benefit with safe places to live and even jobs so that these disabled adults can earn a little money and look forward to the weekends just like most everyone else. Let them have the dignity and self respect that they deserve. I don't know if my posts are reaching anyone but it has been theraputic for me today.