Thursday, November 14, 2013

An idea for Autism Speaks and Neurodiversity

Suzanne Wright’s very recent op-ed piece and John Robison’s resultant resignation from the Autism Speaks advisory boards he served on for more than three years have gained a lot of traction on the blogosphere as well as Robison’s FB page as of late.

Ms. Wright has a very severely autistic grandson for whom she wishes a cure or a treatment which can help mitigate the hardships he and her daughter have to endure. She wrote a piece on this subject, possibly with the intent of helping to fund raise, which may have had less than tempered rhetoric.

Predictably, the neurodiversity movement (and possibly other persons with autism and/or their relatives as well) took umbrage to her essay.

John Robison, as I mentioned before, tendered his resignation and ended his affiliation with the highest profile of autism funding, research and advocacy organization because of this essay.

The neurodiversity movement, including Robison, has been critical of the advertising techniques that AS has used for years. They claim that these are intended to evoke pity and show a lack of respect for autistic people.

Practically since autism speaks’ inception, a variety of persons, mostly affiliated with the neurodiversity movement, has questioned why there are no autistics on the board or in executive positions with autism speaks. This probably contributed to Robison’s subsequent appointment to the organization. After this, there was little commentary or criticism of autism speaks exclusion of persons on the spectrum in positions of power or policy making in their organization.

All bets are on whether or not Robison’s resignation and subsequent vacancy of an autistic representative of AS does not elicit the same criticism and outrage that it did prior to Robison’s affiliation with AS. Also bets are on as to whether or not the ND’s will neglect to acknowledge or conveniently forget Kerry Magro’s involvement with the organization they find so odious.

Roger Kulp, one of the frequent commenters on my blog, has expressed a desire to fill the vacancy that Robison created. It is quite clear from what I have read of his life story, he has been far more impacted by his ASD than Robison has by his. Though I believe Roger may be a valuable voice, I’m not too keen on non-scientists serving on scientific advisory boards. Perhaps Roger could be a useful asset to autism speaks without serving in the same capacity as Robison did; I’ll address that issue later in this post.

John Robison has criticized me for what he believes is my unrelenting criticism of him when he’s expressed positions or done actions which I disagree with. He has stated that instead of being negative and criticize him (or others) I should offer my own positive or constructive solutions. This has not been easy for me, as I believe there are no quick answers or easy fixes for the problems autism causes. However, maybe he has a point. In this post I’ll suggest what I believe may be something constructive that I think would address the issues that Robison and neurodiversity has brought up as well as the issue from Autism Speaks’ point of view of how they can effectively advertise fund raising without perceived dissing of autistic individuals who may not like having someone state that are like lost children or that they are defective or their lives are abysmal, etc.

I suggest that autism speaks recruit volunteers from the higher end of the spectrum such as Roger, myself and others who would discuss the problems autism has caused them in their life. I could talk about my fine motor problems, ornithophobia, getting fired from jobs, lack of social relationships and the inability to concentrate and get things done during the day and my loud voice and the fact my self-esteem was affected by having been in special education for eight years. Roger could publicly speak about his experiences of seizure disorders, elopement, etc. This could help with fund raising without causing offense as we would be speaking for ourselves and not for all the autistic people that Suzanne Wright’s detractors have perceived that she has painted with a broad brush. This would help to generate much needed revenue into the organization to help find the causes of autism and a cure.

These, of course, would have to be voluntary unpaid spokespersons as it could be construed as a conflict of interest if autism speaks offered any financial incentives for autistics to speak.

Another less obvious point in favor of this plan would be that AS would be living up to it’s name and it would be actually autistics who are speaking.

One problem with this approach might be that if people on the severe end of the spectrum who could not communicate effectively were not included this would diminish the credibility of the spokespersons. Of course, AS could emphasize that if autism impacts people this mildly afflicted think of what it is like for severe persons. They could then show footage of more severely afflicted persons without any commentary and let the images speak for themselves. This would address the problems ND has had with commentary like Allison Singer’s about driving herself and her child off a bridge. Of course, they could also have spokespeople such as Dov Shestack who would not be speaking with vocalizations but using a communicator to get his point across.

I believe this addresses the problems of autism speaks’ fundraising techniques, their lack of inclusion of actual autistic people in the process, and Robison’s commentary that I don’t offer constructive solutions.

I myself have so many personal issues with autism speaks, such as their funding of Mottron, Alex Plank and the insurance mandates and their autism in the workplace program which just shows autistics working for other employers and not autism speaks themselves that I would probably have to pass on this even if someone from AS happened to read this blog post and thought this was a good idea. But I know Roger wants to be involved with autism speaks in some capacity whether or not he’s actually interested in doing what I’ve suggested. There may be others on the spectrum who might be interested in this.

One issue, I’ll concede that this does not address is the ND movement’s desire to hijack the capital of AS and use it for their own purposes, such as ASAN complaining that only 4% of funding of autism speaks goes for service-related issues rather than scientific research. However, I feel if they want funding to serve their needs they should form their own organizations and solicit funding themselves. They are free not to donate to autism speaks or any other group they don’t believe goes along with their cause.

If anyone does not approve of my idea and has a better one, then I guess they can pursue it or blog about it.

12 comments:

farmwifetwo said...

I noticed the "but my kid is wonderful" bandwagon after the article. AS never said they weren't, they just mentioned the high costs associated with ASD children/adults (anyone really with a disability) and that it needed to be addressed.

Where does that say "kids are bad"???

When their children finally become adults and the money and services aren't there... then what??

Hopefully, this time they will put someone on their board that is a realist, not a "if I ignore the realities long enough and that those people don't exist in my world" person.

Shanti said...

I think this is an excellent idea and I hope AS takes you up on it. I agree that most people on the board should be scientists, but I also think that Roger would serve there well. He could keep up with the science that is discussed and he can bring the perspective of someone with autism so the scientists understand what is most important. We've all seen frivolous studies on autism that don't move us any closer to a cure. Roger may help them keep the big picture in mind so this doesn't happen.

Roger Kulp said...

Thank you for posting this,Johnathan.It has been very difficult for me to reach anybody at Autism Speaks directly.

The big reason I would like to be on this particular board,is because I not only have I spent the last 5-6 years studying the research and advances in autism,but I have personally benefited from them.While I do have a moderate to severe autism diagnosis.That was first found in 1971.This means it was severe enough to be found under the DSM-II.

That was a long time ago.More recently,I been found to have a dual diagnosis of both cerebral folate deficiency,and severe MTHFR deficiency.The cerebral folate deficiency diagnosed through the trial testing program at SUNY Downstate that was shut down last year,the other metabolic and genetic testing had been going on since 2009,through a DAN!doctor.

The fact I was sick enough,and desperate enough to seek out a DAN! doctor sets me apart from almost any other adult with autism.

I have known the full impact of the metabolic and immune disease associated with autism,and the countless regressions that go with it.I am now very high functioning,but only because of medication and diet.

I am especially well aware of the immune and metabolic diseases that can cause autism.I spent a long time studying them,in order to find answers for myself.Doctors and researchers like Richard Frye and Jill James are very familiar with me.Mostly because I kept pestering them with emails asking them questions while I was figuring this stuff out.

Cure is the wrong word in the case of diseases like this that can result in autism.If an immune or metabolic basis can be found,it's more a case of managing the autism,the way you would manage diabetes with treatment every day.

I have a very unique set of experiences,and want nothing more than to put them to use to help families.Now that I can function as well as Ari Ne'eman or John Elder Robison,it might be fun to debate someone like that sometime.

jonathan said...

Roger, autism speaks has a phone number and you might try phoning them and asking to speak to Robert Ring, their science director. You might remember some years ago when Zack Lassiter was falsely claiming that Zazzle pulled his t-shirt ad directlry as a directive from autism speaks and neurodiversity made this a cause celebre' I contacted Dana Marnand in their public relations department and she set the record straight, so there may be some way you can phone them. I wish you luck in contacting them,but it is not surprising they are reticent in answering emails. Perhaps you could phone them, but you probably should not get your hopes up too high on getting a positive response.

Roger Kulp said...

I sort of figured that the reason they don't have emails or phone numbers on the site was because they have gotten so much harassment,and maybe even death threats from neurodiversity types.Which is why it would be nice if someone from AS sees this page.

jonathan said...

Roger here's the phone number for autism speaks:
(212) 252-8584
they give you recorded information and ask you to push such and such number for whatever your concern is at first, but I think you can push 0 and get a live operator and take it from there.
I'm pretty sure from this number you can hook up with a live person at autism speaks and they will direct your call to the person whom you'd deal with and then you can tell them how much you'd like to be on the science and treatment advisory boards now that Robison resigned. Good luck!
Tell them how you feel and your credential

jonathan said...

here's another number if the first one is a toll call that costs money to you (888)288-4762. I'm working on locating robert ring's or other persons' in AS email addresses for you

Shanti said...

Roger,
You are correct; 'cure' is the wrong word. I just meant that there are a number of studies that don't help people with autism. Another study on maternal age or how parents "feel" is not where the research dollars need to go.

Roger Kulp said...

Been trying to reach someone on the phone with little luck.I do remember John Elder Robinson stopping by this blog in the past.It would be nice if he popped by and left some contact information for me.But that would be expecting too much.Autism Speaks,and their goals of curing or treating autism are going to go on with or without him.

jonathan said...

Sorry to hear that, Roger. I would have thought that from those numbers I gave you that you'd be able to reach someone at AS.

I wasn't able to find an email address for anyone in the organization, but there's a good chance they would not respond even if you had it.

Robison said he was so tired of my relentless criticism and negativity that he was done commenting on this blog. Besides, I don't think he'd be interested in helping you. But I guess you could contact him on his blog or website and maybe he'd give you info, i don't know.

Not sure what else there is I can tell you.

Anonymous said...

You are really self hating, aren't you?

jonathan said...

@ Anonymous 8:42

Actually, no I'm not.