Sunday, October 17, 2010

Autism Speaks Walks the Plank

There was a time when I was an enthusiastic supporter of Autism Speaks. That time has passed. I apologize to anyone who might have been influenced by my earlier support to view Autism Speaks as a legitimate spokespersons for those severely affected by autism or the parents fighting to help their children who are truly and seriously affected by autism disorders.

AS has raised the profile of autism around the world, worked together with the state of Qatar to establish World Autism Awareness Day, and raised funding for autism research. When some of the research money went to notorious anti-cure "autism" researchers like Dr. Laurent Mottron I began to have serious doubts about Autism Speaks. It began to look like a bureaucracry shifting with the winds of political correctness as defined by a few major media organizations which seldom portrayed autism as functional disorder which restricts the lives of many with Autistic Disorder and  some with Aspergers Disorder. The bringing on board of successful businessman John Elder Robison as an "autism" self advocate was a serious alarm.  The final alarm though is the recent affiliation with Alex Plank, an allegedly "Aspergian" young man who is also very successful socially, and in the world of the internet, a young man whose web site, amongst other trashy commentary, praised the fact that Dr. Ivar Lovaas had died recently. 

Autism's Gadfly, Jonathan Mitchell, has written an excellent commentary, Mr. Robison Goes to Washington,  on the ill advised role of John Elder Robison as a science adviser for Autism Speaks, an organization which apparently no longer speaks for parents of children with autism, or for autistic persons like Jonathan Mitchell, who would like to see more research aimed at finding a cure for autism disorders.  In the following video, co-sponsored by Autism Speaks, Alex Plank, John Elder Robison's son and an allegedly "Aspergian" young lady mock various toys sold at an autism conference.   Whether the toys are of any therapeutic value, whether autistic children or any children, enjoy playing with them I don't know. What is offensive is the sight of these very capable young people, including Mr. Plank who makes reference to his Land Rover,  mocking the efforts of parents to help their children whether those efforts are ultimately successful or not. The video is set in front of bookshelves filled with books and obviously these are intelligent young people in the video even if their sense of humor is offensive as I in find it to be.  

The mocking humor displayed by Mr. Plank and young Mr. Robison is  mild stuff by the standards at Mr. Plank's Wrong Planet web site where the death of Dr. Lovaas was cheered and parents seeking cures are routinely mocked and derided by self professed Auties" and "Aspies".  Why these obviously intelligent people,  including John Elder Robison,  huddle together under the banners of what are, by definition, mental disorders defined in the DSM, is beyond me. 

What is clear is that Autism Speaks has abandoned any pretense of seeking to  speak for the families of seriously autistic children  and autistic adults who seek cures for their autism disorders.

Autism Speaks, and its integrity, have walked the Plank.


Stranded said...

When I see these jokers I think of all the young children here on Ontario's waiting list or kicked off their waiting lists for any funding or respite options. I think of families struggling to get through the day. I think of all the undiagnosed children in other underdeveloped parts of the world who are growing up in to severly disabled adults with autism living with aeging parents who never got any therapy or any help for anything.

When I think of all these things, it makes me realize what a pretentious waste of time this video is, and what a waste of time and resources autism speaks is becoming.

I have a sense of humor and so does my son with autism, but we aren't laughing at this rubbish.

I too find some therapies and therapy ideas to be "strange" but they are no laughing matter, it just all really sad!

Mom on a Mission said...

Whenever I watch any of the 'Autism Talks' youtube posts I am reminded of how, once upon a time, we would have given anything for our son to be that high functioning. It was not our reality and it remains the un-reality of a significant portion of the autism population. These individuals are obviously capable of having productive, independent, joyful, fulfilling lives despite still having the label -- they clearly do not have many of the challenges that others with the diagnosis do. If only all ASD children could have this level of functioning... thank you Harold for keeping the true reality in the forefront of people's minds.

Scott Lynn said...

Who are these clowns? Did I miss something or was that actually put out by Autism Speaks?! Yeah, really professional, guys. Way to take the matter seriously.

And, Stranded, I'm glad that you point out that you (and many of us) can in fact have a sense of humor about these things, but not towards garbage like this. This plays like an insulting parody, and has no informative value whatsoever.

BTW, I have a sense of humor about autsim as well, in fact I write a webcomic about it:

So I too can laugh, but I'm not laughing at these schmucks who can't seem to KEEP from laughing.

M.J. said...

My kids had a few toys like the ones in the videos when they were younger and loved them. Since all three are very visual with their stims and sensory needs, we still have some of the ones like the light-up balls.

I'm glad that I have not donated to Autism Speaks recently. And if this is what they are spending money on, I don't think that I will be in the future.

Ginger Taylor said...

We all had high hopes for AS at the beginning. Now they are just a money vacuum.

Autism Mom said...

It's why I give locally to organizations such as NFAR and CCC Kids. I can see first hand that these programs are providing valuable services & support for the autism community.

blogzilly said...

Hey Harold,
I'm new at this, so please don't blast me. I just have a couple of questions. I'm confused. When I looked at the video, I saw a couple of teenagers just being teenagers, and I find most teenagers to just be, well, frankly, kind of annoying. A lot of them, anyway. Their senses of humor are crass and lack refinement, there's a huge lack of respect and I don't get a lot of the way they think some things are goofy.

But then again, I'm 43. There's a generational gap happening that I am only beginning to start to even accept.

I also don't understand why what they are doing is wrong. They have some toys that they are showing and kind of talking about, but I didn't get the sense that they were saying they sucked or anything. They weren't being overly technical about them, certainly, but they weren't really saying they were crap. They just seemed like kids being...well, kids. Did I miss some aspect of it that would make that perspective not relevant to why the video is not appropriate?

Again the bartender in the Cantina...No Blasters! No Blasters! I am just looking for answers.

Like I said, I'm kind of new at all of this. Hell, I don't even know 1/1000th about Autism as you do, nor claim to. I search for new info every day on the subject. My 18 month old son had a brain tumor, got seizures, brain tumor out, seizures gone, but has an ASD diagnosis and is in an ABA Therapy Program.

And this is all within the past year. So I am to you what Pong is to the iPad. Hell, I don't even understand about the Intellectual Disability thing you mentioned a few blogs back or why Autism Speaks is a crap website.

I'm pretty dazed and confused by all the conflicting info out there overall.

MyTruth said...

This crowd is so desperate for a diagnosis -and autism really doesn't work - so lets come up with one (after all, the APA seems open to anything that'll increase billing opportunities!)So, I submit: a variant of "auto-munchausen" syndrome... any other ideas?

jonathan said...

blogzilly, I hope Harold does not mind if I jump in. First, these are not teenagers, Jack Robison is 21. Alex Plank is 24, albeit an emotionally immature 24 year old.

I am not sure if they said anything that was wrong or nasty or abusive either, or outwardly inappropriate in the video. It is just that the video was boring and mundane and these people are not even serious filmmakers presenting their work at film festivals or trying to get them aired anywhere except on you tube.

What is wrong is that autism speaks, supposedly a credible charitable organization would fund such trash. Particularly in light of the fact that John Robison, father of Jack Robison serves in what is supposed to be a disinterested unpaid advisory capacity on their science board and paid for some of his son's films and then solicited and received reimbursement for the costs of some of these films which I regard as highly unethical.

I guess I will let Harold or someone else more sophisticated than I am address the issue as to why the film is offensive.

M.J. said...

While I am neither Harold nor more sophisticated than Jonathan, I thought I might be able to expand a little bit on the problem with the video. From my point of view, it wasn't anything that was said or explicitly done that was the problem but rather the overall tone of the video. Watching the video left a bad taste in my mouth and for a large organization like Autism Speaks to fund it makes it worse.

I think the best way to explain the problem would be to use an analogy. Assume for the moment that we are talking about a different disability, say blindness. As you could guess, there are some people who are only partially blind while others are completely unable to see anything. Now imagine a video were people who fall into the partially blind category are talking about about the traditional white cane and remarking on how well you could sword fight with it, or making jokes about having to read using braille, or perhaps suggesting that seeing eye dogs are just useless and smelly.

If you were a completely blind person, you might find these sort of comments annoying. After all, you might have need of these things were the partially sighted person might not and it is disingenuous for someone who is not as disabled to suggest that the tools are useless.

I know this example seems a little bit contrived but I would say that is the problem with this video. The young adults in the video supposedly have a form of autism and yet they are being mocking towards some of the tools that are used to help very young children with autism.

As I said above, we used some of the same toys with my children when they were younger because they were attracted to them and would pay attention to them. It can be very hard to get the attention of some children with autism, so, if you have something that works and can hold their attention, you can use that as a tool to get them to interact with you. Getting that interaction is critical if you have any hopes of teaching them to deal with and (hopefully) overcome their autism.

As a parent you do what you have to to try and help your children, and if that includes goofy toys then so be it. But the video is suggesting that these toys are nothing but nonsense and that the parent's actions are nothing but nonsense by association. That notion is offensive when you have a hard time to get your child to even look at you let alone be able to talk at all.

Those who are able to function well in spite of their autism should not mock what needs to be done to help those who are not able to function as well.

Now, this particular video is, as Harold said, rather light on the mocking. But these individuals have a history of parent bashing and minimizing the very real difficulties faced by those who are more severely affected by autism.

blogzilly said...

Those comments do help to understand the point of view actually. Like I said, I'm new at this (at least from the perspective of Autism) and so for me the video is very out of context.

This is hard sometimes, learning the mine field of the Internet, especially when it comes to reaching out community-wise.

Appreciate you all taking the extra time.

Anonymous said...

I would really appreciate it if my comment were approved, I'm just looking for some answers.

I'm sorry MyTruth that you believe we fake or feign illness. It does hurt to hear that while constantly appearing outwardly normal to people and others believing we are somehow problem free, until they actually talk to us in depth. Why would you say that?

I do not see how that this video would offend anyone. Maybe that is due to a lack of theory of mind on my part, and you can draw your own conclusions. I read the stances on the matter contained in the other comments as well and still hold my current stance.

Mom on a Mission: Not all of us are so high functioning, but most of us are.

Scott Lynn: People laugh to avoid conversation or make situations easier. I have found that not only people with difficulty with social anxieties do this.

For MJ, I will try to put into words my experience:

You should think about having a label where most people assume you are mentally handicapped after hearing what it is or believing you couldn't possible have it because people with that label are mentally handicapped and then you try to debunk that by saying you are not while citing statistics that most people like you are high functioning and have average IQ's among the general population. But then people just say you fake your difficulties, that you should be ashamed for identifying openly as autistic.

High functioning people often feel minimized by pro cure zealots. Especially when we don't believe we should hate the way we are, even worse when we are actually happy. When people are screaming in the streets that autism is caused by vaccines and your autistic child is a normal child just trapped behind a prison of autism that they cant escape, how do we come to terms with this? How should we deal with it? Should we allow groups to cite the 1 in 150 numbers without declaring the majority in that figure are high functioning? Do we allow them to make a case that autism is a tragedy? Do we have a right to say we like ourselves and don't want cure research or a prenatal test? Do I make any sense?

Autism is complicated and has many degrees and variation, people at the upper end of the spectrum I believe are alienated by advocates of the lower end population that have more difficult comorbids, the reverse is true as well, there is a lot of trust difficulty when dealing with groups of people who would like to eliminate autism or advocate for genetic research that may lead to a prenatal test. While autism is regarded by most autistics to be an integral part of who they are in every way.

Do I make sense?

Anonymous said...

Autism spectrum disorders, INCLUDING ASPERGERS, by definition, require CLINICALLY SIGNIFICANT IMPAIRMENT. Autism does not mean you have a different perspective or a quirky personality. It means your quality of life suffers because of impairment. Yes, folks with autism often have unique and valuable perspectives on things, but by definition, if they actually qualify for the diagnosis, their lives and their family's lives are hurting because of it. I can't imagine anything more pathetic than labeling oneself with a disorder one does not have. I have freckles so I guess I'm going to start saying I have skin cancer. Crazy.