Monday, December 7, 2015

Autism speaks appoints autistic board members, pro-cure autists again scorned.

Autism Speaks has announced the appointment of three new members to their board of directors, two of three being on the autism spectrum.  The neurodiversity movement (and possibly others) had railed against AS for years, claiming they were ogres for not ever having a single board member who had the condition themselves.  Now I hope the neurodiversity movement is satisfied.  We'll see if they call Shore and Paradiz traitors.  So far, they have not used such graphic language, but upon the announcement of Shore's appointment, The Thinking Person's Guide to autism tweeted that they hoped it wasn't tokenism.  The twitter account of boycotting autism speaks stated it was a step in the right direction but they still would not support autism speaks as long as they were pro-cure and used scare tactics to tell people how bad autism is.   

Though Autism Speaks has stated that one of their goals is finding a cure for autism, they appointed the anti-cure John Elder Robison to their scientific advisory board in spite of the fact that he was a high school dropout with no knowledge of autism science.  This did not satisfy neurodiversity proponents and Robison ultimately ended up tendering his resignation when autism speaks would not come around to his way of thinking.

Paradiz is a former professor of German literature at Bard College.  She subsequently started a consultancy business for educating autistic children with no formal training or background, except for being the parent of a son diagnosed with Asperger's.  She was apparently diagnosed well into adulthood after her son received his diagnosis.  She was formerly married to Steve Edelson who took over running the autism research institute after Dr. Rimland passed away.  She wrote a book about her son, Elijah's cup.  In this book, she describes attending the Autreat conference, one of the premier neurodiversity conferences which is presented by Jim Sinclair's organization Autism Network International.  I'm not sure where Ms. Paradiz stands on a cure for autism.

More intriguing is the appointment of Stephen Shore, who wrote the autobiographical account of growing up with autism, Beyond The Wall.  He received a doctorate in education and is a professor of special education at Adelphia University.  He also presents at conferences all over the world.  I've known Steve for many years now and he's stated that he opposes a cure for autism because it would interfere with the gene pool.  He also stated that at the time they appointed Robison to their scientific advisory board that he'd also been approached by autism speaks to serve with them in some capacity (though I'm not sure of the specifics) and turned them down because he disagreed with their views on a number of issues.  I'm not sure why he changed his mind.

The biggest disappointment is that they did not appoint my first choice, Roger Kulp.  Roger is someone on the spectrum far more severely afflicted than Shore or Paradiz.  He has looked into treatments for his problems and extensively researched the literature on metabolic causes of autism.  Roger has expressed an interest in either being on the science advisory board or the board of directors. I've written about Roger's background in a previous post so I won't repeat the info here.

I guess wanting autism speaks to stop supporting neurodiversity in a backhanded manner and taking such a cavalier attitude toward those of us on the spectrum who want a cure is too much to hope for.

Addendum:  I've just spoken to Steve Shore and he states that he's had a change of heart because Brian Kelly, the new chairman of the AS board is advocating for supports and services over a cure.  Mr. Kelly took over as chairman of the board after Bob Wright resigned in May.  Mr. Kelly  has written about parents contacting him for the need for supports and services.  Though I am not opposed to supports and services for people on the autism spectrum, I do believe that autism speaks should give more priority to scientific research with the aim of curing autism.  If autism speaks has headed in a new direction, this is certainly a disappointment.  


15 comments:

Claudia Mazzucco said...

I do not understand this whole situation with Autism Speaks. Why is it that people with no disabilities feel entitled to express their opinion against this organization? Should not the two be separated and practical and concretely defined as serving different interests?

jonathan said...

Claudia: Many of the people who oppose autism speaks do claim to be disabled. In some instances, their understanding of what a disability means is different than yours or mine would be. They believe in the social model of disability rather than the medical model of disability, claiming that it is societal constraints that cause them to be disabled.

I agree that autism speaks should not serve neurodiversity interests in any way or have neurodiversity proponents on advisory boards like John Robison or fund researchers whose bent is neurodiversity such as Laurent Mottron. Unfortunately, they feel differently and there is nothing I can do. I suppose you'd have to direct your question about that to autism speaks.

Michelle Shull said...

I guess the same question could be posed in the opposite direction. "Why is it that people with no disabilities feel entitled to express their opinion for this organization?" When the disabled people directly affected by the actions of the organization are not represented, misrepresented, or ignored.

I understand that there are autistic people who want a cure. But what if that never happens? Or doesn't happen in their lifetime? There is no harm in accepting yourself as you are. There is no harm in society accepting you as you are in the mean time. Many of the traits that make being autistic difficult, that you'd want to cure, would be alleviated with more acceptance by all and a complete lack of the scare tactics and demonization that has been the method of Autism Speaks so far.

Everyone needs to be heard. On this matter, everyone autistic needs to be heard first and foremost.

jonathan said...

Hello, Michelle, I think it is irrelevant whether or not a cure is found in our lifetimes. What is relevant is that it should be the ultimate goal of every funding body in autism. We should say, "someday we hope that we will never have a need for these organizations."

While we may have no choice but to make the best of a bad situation, believing that society will ever completely accept autism and the neurodiverse baloney that societal acceptance and accommodations will solve these problems is nothing more than an opium-induced dream.

The problem with every autistic being heard is that just a small sample of them are being heard and it is those at the last impaired part of the spectrum. I feel that should change, which I why I would endorse Roger Kulp in Steve and Valerie's stead or at least in addition to them.

Yuval said...

I hope this doesn't mean that they are going to abandon searching for a cure altogether. The best scenario would be to have Roger Kulp and yourself on the board.

EK Aspie said...

Actions speaks louder than words and as an ND guy I have some cynicism I am pretty excited that there are two autistic board members at Autism Speaks. When I look at this in combination with the spate of resignations, the less negative/more positive rhetoric I like what I see. I do not know Stephen Shore but everybody I know that does know him speaks very highly of him. I did attend a lecture by him and was impressed.

Except for the fanatics on both sides pretty much both ND and pro cure people that I read support Autistics right to choose to take a cure which is your position and support for Autistics here and now. The disagreement is about which should take a priority of funding. My concern is that in the real world there will not be this choice, that there will be unresistable pressure to take a cure via financial inducements and penalties. Having two Autistic board members at Autism Speaks and the its only a difference/there are positive sides of autism rhetoric might prevent this.

lurker said...

I think this is a sign of further aggressive activism to come, as some figures in the autism community abandon earlier goals by letting such a turn of events unfold. The diversity crowd may say they aren't convinced or pleased with this change, but they know they're gaining ground, and want to keep applying their pressure until they have complete control over the issue. Their criticisms of Autism Speaks have the implication that this organization has power and influence over the lives of autistics, a power which the neurodiverse group would wield if they get control over it. They have no intention of just letting autistics choose cure, even as they make excuses to prevent cure from being devised.

Anonymous said...

@ Claudia Mazzucco, Curing human nature is something that's more truly improbable than finding cures for disability & disease, as people want the best for themselves & their children, as I also as well want the best kind of life I can for myself. To say people should accept disabled people as a peer equal is more akin to asking omnivore not to eat meat. To state people should do so otherwise is really a certain manifestation of Cultural Marxism.

Roger Kulp said...

More and more we are seeing the antivaccine movement gradually fading away,or being marginalized as the fringe movement they are.As the antivaccine viewpoint is seen as less acceptable,the default way of seeing autism seems to be that of neurodiversity,or something close to it.I think most autism organizations,and most autism families embrace this neurodiverse garbage.Organizations,like AS do this because I believe they think this is what the public,and their donors,want.The families of autistic children may have been brainwashed into believing neurodiversity is the only acceptable way of seeing autism,because they are constantly fed this by the media.Also,for many people,wanting a cure or treatment for autism,means things like shoving industrial bleach up your kid's rear end.The antivaxers have really tainted the idea of curing or treating autism.They are every bit as toxic a movement as neurodiversity.

I have been told for over and over for the last few years how unique I am.I get it in every internet group I have been in,and I have heard it from every doctor I have seen.I have come to realize I may just be too unusual a case to represent autistic adults.In late October,I received the results of a whole exome sequencing,and I have found I have a unique type of a rare primary immune deficiency,which means my cerebral folate deficiency really is autoimmune,and not metabolic.I have gone into this in some detail here

https://plus.google.com/111441381894370121536/posts/7gYrmy6eEfB?cfem=1

and here

http://epiphanyasd.blogspot.com/2015/12/one-of-thousands-autism.html#comment-form

I post my story in places like this on the web,because it is so unusual.So doctors,parents,and anybody else searching the web might find it.If my story helps one person,I am very grateful.If I had any real goal,now,it would be to try to promote awareness and diagnosis of genetic primary immune deficiencies in autism.Andrew Wakefield,and the rest of the antivaxers,have had such a toxic effect on research and awareness of genetic immune deficiencies in autism.There is next to none.I would love to work to change this.

jonathan said...

Roger: While it's true your situation may be unusual. I think it's unusual for autistic people to be able to get doctoral degrees and marry and write books and publish them. Two out of two autistic people serving on the board of directors of autism speaks have been able to do this. Three out of three have been able to marry and have written publishable work if you count Robison on the scientific advisory board. Most autistics will never be able to get married, get a doctorate or write a book and publish it. If they aren't too unique to serve on autism speaks' board then you certainly aren't either.

I still wanted you on the board, but I realize that's not realistic given high profile autistics will be preferred over ordinary, every day people who have not achieved notoriety such as ourselved.

Conduct management said...

Good thing about Autism Speaks is that they are concerned with Autism Spectrum Disorders and to people who are struggling with this.

Anonymous said...

Robinson (who dropped out of high school and had little knowledge on autism science ) got onto the scientific advisory board!? Hey Autism Speaks! Pick me for the scientific advisory board! Yea, I'm study web development in college and not autism science, but I'm autistic! That's got to mean I'll do well with the job! Pick me! Pick me!

In all seriousness, I don't get it why Autism Speaks would elect someone with no experience with autism science to the board. Just because he was autistic doesn't mean he was knowledgeable in autism science. My grandpa had lung cancer. Did that mean he instantly knew about the science behind lung cancer? No!

jonathan said...

@ anonymous 6:11 You're absolutely right. I suspect the reason Robison was picked was because there was pressure to have autistics in positions of power and he was a bestselling author and was well known. It certainly wasn't based on his scientific acumen or any other qualifications.

Anonymous said...

Exactly. Many disabled people deny that there disabled because their too afraid to admit they have a medical problem.

Anonymous said...

That's right. Autistic rights activist force society to accommodate & accept the challenging behavior of autistic people and wants us abandon treat and cure. Whoever want to abandon cure and treatment for those who are legitimately suffering from autism, is downright selfish.