I have decided to take a more active advocacy role . . .
Readers of my blog know that I’ve been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I’m a fairly action oriented guy, and I don’t like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I’d have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.
Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.
In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals - should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.
I’ll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it’s modeled on the system developed the NIH. I feel it’s a fair way to allocate limited resources and I’ll surely make the most of my opportunity.
I believe it’s a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone’s expectations. I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I’m off and running!
One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I’m involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today’s autistic population.
There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they’ve totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.
In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That’s going to be a real challenge because the views of different people on the spectrum are so widely divergent.
When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.
At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it’s more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.
Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from "living like anyone else." To do that, he needs help remediating some of the disabling aspects of his own autism. However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.
I believe each of us should be free to choose therapies or treatments - nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today's world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.
At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there's a lot more to be done.
There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal. Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.
As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.
Read the official announcement here
Comments
I do agree that there needs to be greater focus on support programs and resources.
Good luck and thank you in advance for doing this.
this day has been a long time in coming.
BTW, it isn't Mitchell's autism, but his attitude that prevents him from "living like anyone else".
http://cometscorner-clay.blogspot.com/2010/03/he-works-hard-for-money.html
I formally respected your views and your advocacy, however this suddenly puts you in the same bucket as Marc Sirkin.
Your presence on this committee will I predict, not make a jot of difference to their research funding, nor their corporate attitude.
However, your presence will be a near invincible shield against their critics.
You have handed them a pair of Calvin Klein's gusseted with PETN.
Clay is right. Your are a Traitor.
(And Ari doesn't want you saying that you have any links/support from ASAN - because you don't)
One good reason why you're not fit to be on the Board
"Therapies like ABA and RDI have been successful for some on the spectrum"
Where's your Science to back up this claim?
Let me save you the trouble of looking it up - it's all been thoroughly de-bunked by Gernsbacher and Dawson.
Forensically disected and found without exception to fail to make the grade (see their recent letter in The Lancet).
Day One and you've failed spectacularly on one of the most important issues facing Autistics in the US today.
Shame on you.
Autism Speaks is the only group capable of pouring tens of millions into autism research. Indeed, that is their mandate.
Autism Speaks has been roundly criticized for the "cure" talk and videos. They have been criticized for spending millions on genetics research that won't do a thing for you me or any other living autistic person. Yet their fund raising ability gets stronger every year.
Don't you think it's a worthwhile goal to try and see that money spent in a way that benefits those of us at different points on the spectrum today? That is what I hope to do.
Okay, John, then the first thing on your "to do" list should be to get them to return more than 4% back to the communities that support them through their walks. Sound like a plan?
I'll be meeting with Autism Speaks management soon and that balance is certainly one of the things I want to discuss.
I can understand, given their theories of autism causation, they would want to spend money on research to eradicate us worthless beings, but seeing as how they claim to be a charity, I think it would be nice if they allotted 40% towards helping autistics and their families.
I don't know how that compares to "Save the Children" or "Operation Smile", but that would get my attention as an organization supposedly helping autistics.
I do not think you are going to see 40% of Autism Speaks funds directed to community service simply because their mandate is to support research.
My own goal is to steer that research in a direction that benefits autistic people.
As I have written elsewhere, $1000 spent on community programs helps one community. That same money spent to develop a new therapy can be much more powerful in its effect because it can reach everyone. I believe in that, but at the same time I am sensitive to a need for a balance somewhere between 4% and 40%
Thirty-some scientists, two parents and you. How much influence do you really think you're going to have even in that limited capacity.
If I felt I was a "token autistic" I would not have agreed to do this. Why don't you give things a chance and we'll see what develops.
Actually, Socrates, Ari and ASAN are doing John Robison a favor with that stance.
In one breath they say "People with Asperger's are on the spectrum, and we should support them and share their stories" (look at their website stories and guest blog entries), and in another breath they shout "You're not really autistic, so you don't know what you're talking about!" Make up your minds, Autism Speaks: People with Asperger's are either autistic or not autistic. You can't have it both ways.
We are a thankless group of people. I think you're wonderful.
I love Autism Speaks - and I am a biomed-head.
After all of those protests and complaining all they can do is be angry because the person they wanted wasn't appointed? They should be happy any autistic was appointed!
They didn't get what they wanted (again) so they have to whine about it.
I feel this is rather hypocritical of them (yet again).
How typical.
I'm glad that JER was appointed because he, at least, is sane. JER and I probably disagree on many things but I have no doubt that he and I could have a civilized conversation without resorting to petty name calling and responding with "whatever." Much better him than someone from ASAN and this quote from JER confirms it for me:
"As I have written elsewhere, $1000 spent on community programs helps one community. That same money spent to develop a new therapy can be much more powerful in its effect because it can reach everyone. I believe in that, but at the same time I am sensitive to a need for a balance somewhere between 4% and 40%"
I asked "Autism Speaks" why they made this choice, but instead of answering me they hung up. Maybe you can do a better job at getting some answers out of them.
Evidently you share these hopes -- but what if these hopes are not fulfilled? It could happen that "Autism Speaks" won't change their actions one bit, just because of having you on the Board.
It could happen -- for instance -- that "Autism Speaks" continues refusing to use more than 4% of their ever-increasing income to help actual people on the spectrum ... it could even happen that "Autism Speaks" continues using a lot of that ever-increasing income to fund yet more Playboy Mansion galas and to produce further degrading videos along the lines of their existing fear-pieces "I am Autism" and "Autism Every Day."
Suppose it turns out that "Autism Speaks" doesn't listen to you, doesn't change a thing just because they've granted you a Board position, etc., etc., etc. If that state of affairs became evident, would you still feel willing to remain a Board member -- or a member at all? If so, for how long would you do this (if the organization remained unresponsive) before deciding that your (and other spectrum folks') best interests lay elsewhere?
I'll be meeting with Autism Speaks management soon and that balance is certainly one of the things I want to discuss.
I take you at your word, and know your values won't let you fall into some snake pit of environmental causation deniers over there. But somehow, their track record scares me. Could your appointment have more to do with window dressing? I don't know, but am very suspicious of their true intent.
In any case - good luck. I'll be following this with much interest.
T
I think that the more division there is within the autism community, the more we hurt ourselves from finding out anything about it.... Taking sides does no one any good, and simply leads to infighting- when what we need is help and answers. I also LOVE that you are supporting more cognitive interventions!
Claire
Despite what our feelings are about Autism Speaks, I think that this is a wonderful opportunity for both you and the organization. I trust that you'll work to the best of your ability for those who you represent, and for the best that the organization has to offer us.
Congratulations John!
While I do not know at this time what the future holds as far as your post to Autism Speaks goes, I can certainly say I wish you luck in the endeavor and do not think you are a "traitor" for trying to make change.
People who yell at AS for their crimes don't want a first step towards fixing those? I don't get it.
Yes, Mr. Robison is indeed just one autistic individual in the bunch... but that's just a first step. Who knows who else will be appointed in the future? It's a wait and see for me.
Good Luck!
I am an autistic individual with two autistic children (both of course have different challenges and one is more impacted than the other but they both have autism).
They both have received ABA treatments and are also success stories.
I'm not saying ABA or RDI is for *every* person on the spectrum. It just doesn't work for some. But to say it doesn't work AT ALL... well, color me confused.
no matter what their motivation is, more voices are good, always. it helps, it's constructive. so i'm all for this move. (also, jess wilson is in favor of it, that's all i need to hear).
Despite my concerns for their motivations of comprising 1/30th of their board to be those on the spectrum (despite having 1/10th being "parents"), I'm glad it's you. There are worse choices.
Let me assure you that I moved the scores on every proposal for which I had strong feelings. I was absolutely not ignored, and I felt my contributions were appreciated and thoroughly embedded in the review team's final result.