Tuesday, March 9, 2010

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

46 comments:

Kim Rossi Stagliano said...

Congratulations, John.

The Pitman Geek said...

Congratulations. I hope that you can restore my faith in Autism Speaks, some of their past actions have me dismayed so I have focused more on local advocacy programs.

I do agree that there needs to be greater focus on support programs and resources.

thegirlfromtheghetto said...

Good for you John! I'd really appreciate it if you could help get Autism treatment covered, because we are drowning paying for three weekly sessions for our little guy when we are down to one income. Let me know if I can ever help you in the blog world to promote anything. Not that I'm anyone, but it couldn't hurt to promote the issue on a ton of websites, blogs, Twitter, Facebook, etc.

Good luck and thank you in advance for doing this.

jess said...

oh, john .. i am thrilled that this has finally come to fruition. your voice is so important and will no doubt bring a different (and vital) perspective to the organization.

this day has been a long time in coming.

kyra said...

with you there, it's possible my view of Autism Speaks will turn around. i hope so.

Brian Patrick Tracey said...

Great news, John. Congratulations.

Stimey said...

Wow. That's a big deal. I'm encouraged that Autism Speaks is including your voice. I hope it turns into a meaningful relationship. I wish you the best of luck and am so very, very interested to hear how things go.

Sunday said...

I certainly second Stimey's comment and am hopeful that Autism Speaks' inclusion of a board member with autism will result in more positive changes for those living with autism instead of their obvious past goals of trying only to prevent it.

Robin said...

John, this made me smile. Autism Speaks needs a plain talker like you.

MOM-NOS said...

This is fantastic news! It's a huge and important step for Autism Speaks. Congratulations, and thanks for taking it on.

Clay said...

Any plans for how you'll spend your thirty pieces of silver?

John Elder Robison said...

Clay, there is no silver. This is a volunteer thing.

Clay said...

I meant metaphoric silver, and in this respect, you made a better choice for the post of Judas than if they had chosen Carley or Mitchell.

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

Socrates said...

JER,

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)

Socrates said...
This comment has been removed by the author.
Socrates said...

[edited for spelling]

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.

John Elder Robison said...

Socrates, I'm sorry you see me as a traitor, because that's not how I see the situation.

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.

John Elder Robison said...

Socrates, the idea that ABA and RDI is "debunked" is far from proven. You may not feel ABA is appropriate for you; I certainly don't feel it's right for me. But I have seen progress in more impaired kids at our River Street program here in CT. I've heard to many success stories from teachers and parents to discount either.

Clay said...

"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?

John Elder Robison said...

Clay, I agree with you. I would like to see more than 4% returned to communities too. That said, I also agree with the idea that most of the funding should go to research. So what's the right balance?

I'll be meeting with Autism Speaks management soon and that balance is certainly one of the things I want to discuss.

Clay said...

"So what's the right balance?"

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.

Baloney said...

It makes me happy to know that you will be able to thoughtfully support and influence such a large group. I would love to see the "autism community" come together and become more effective.

John Elder Robison said...

Clay, you have never heard me refer to anyone as worthless. And I would never countenance elimination of any group of people.

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%

Catana/Sylvie Mac said...

I really wish I could see this as good news, but I can't. Why? Because the position doesn't allow you any input into the structure or functioning of Autism Speaks. It's the kind that allows them to say "Look, we have a real autistic person working with us." I hope very much that I turn out to be wrong, but it seems to me that you're going to be nothing but the "token autistic."

Thirty-some scientists, two parents and you. How much influence do you really think you're going to have even in that limited capacity.

John Elder Robison said...

Sylvie Mac, I know it's easy to see me as one among thirty, so what can I do? But I don't feel that way, because I was one among thirty six with the NIH review boards, and I most assuredly moved those groups on issues where I felt strongly.

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.

jonathan said...

(And Ari doesn't want you saying that you have any links/support from ASAN - because you don't)

Actually, Socrates, Ari and ASAN are doing John Robison a favor with that stance.

Ylanne Sorrows said...

As an Aspergian member of ASAN and a neurodiversity supporter, part of me is glad that Autism Speaks has finally appointed someone on the spectrum to its advisory committee (and I hope you can help shape their decision making to be far more beneficial to autistics, instead of a measly 4% of money going to the community); however, I feel they are very hypocritical!

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.

Kathryn said...

John -

We are a thankless group of people. I think you're wonderful.

I love Autism Speaks - and I am a biomed-head.

processingautism.com said...

Thank you for taking an active role. This is an historic moment for those on the autism spectrum.

Eric said...

Congratulations John, I'm so happy that a fellow Aspie will be speaking for us. I'm getting active myself, but in a different route. I went through most of my school years being severely bullied, it was only when I was diagnosed with Aspergers that I made the connection with the syndrome and my school life. I've gotten active with several anti-bullying sites online, but after the suicide in South Hadley, I now feel the need to speak out. I wonder how many of us went through the hell that I did, and I weep. I'm praying that my speaking out will help kids in the future, and I thank you for being one more voice for us. I have one saying that I take to heart "Changes will come from the power of many; but only when the many come together to form that which is invincible, the power of one". Thanks again. Eric

Stephanie Lynn Keil said...

An autistic person has finally been appointed to a position at Autism Speaks and all ASAN can do is complain about it?

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%"

KateGladstone said...

Dear Mr. Robison -- now that you have an influential position with "Autism Speaks," could you please ask them why their web-site column "In Their Own Words" chose to use the photo of a toddler to illustrate the autobiographical piece (personal narrative) of an young adult Aspergian who is a psychology major doing an internship at "Autism Speaks"? You can see this at http://www.autismspeaks.org/community/ownwords/intheirownwords_alice.php -- the same open-mouthed, apathetic-looking toddler is used to illustrate all *In Their Own Words" columns on the "Autism Speaks" site, which strikes me as pretty disrespectful (given that the authors and subjects of these columns are usually not toddlers.)

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.

KateGladstone said...

I hope your new position allows you to succeed in getting "Autism Speaks" to actually *help" us spectrum folks instead of just pretending to talk for us.

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.

Becky said...

I found out a few weeks ago that my 20 year old son has Asperger's. "Look Me in the Eye" was recommended to me by a friend of mine. I'm on page 5 and I can't find the right words to express how much this book means to me already. As many times as you heard that expression yourself, I've said it to my son. I'm refreshed already with reading your references to your own world and not understanding why it's considered normal to "stare at someone's eyeballs". I finally get it and I'm energized to read about someone elses experiences which will open up more of my son's world to me. I have regrets for my lack of understanding for the past 20 years but I'm committed to channeling that to being the positive support system he needs and further understanding the wondrous and mysterious world of asperger's. Frankly, I know nothing yet of Autism Speaks, what it stands for or what it provides but if you have as much influence in that forum as you have had for me with 5 pages of text, good things are ahead for sure. All the best.

Terramuggus said...

Not sure how I feel about this, John. From my perspective, AS has worked deligently to bury what seems to be the largest part of this population, regressive autism. Their science people have pushed for genetics and educational intervention research to the exclusion of environmental causes (yes...vaccines). It's been my hope that the Wright family will eventually get back their hold on this rogue pharma astroturphing charitable deflection, and lead it into a more environmental-causation direction.

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

Claire said...

Yikes! John, I fully support your joining in the conversation, and have even blogged about it myself. http://professormother.com/2010/03/11/heres-to-you-mr-robison/

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

Ray said...

As with any decision in life, this too has been met with criticism and adversity.

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!

SpectrumConnection.net said...

I hope this means Autism Speaks will finally broaden its focus by having someone on board who can speak to the needs of the less-disabled folks with autism. Congratulations to you both :)

KateGladstone said...

Now that "Autism Speaks" has one actual autistic person on its board -- and 29 non-autistic people -- isn't this a little like picking one black and 29 whites to form the board of an organization to help blacks? Or picking one woman and 29 men to form the board of an organization to assure the rights of women?

Heather Babes said...

I interviewed Jonathon Mitchell for an article, and I've read a bunch of your stuff too... I've read a bunch of EVERYBODY's stuff... nature of the beast.

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!

Heather Babes said...

I forgot to add (oops) that I am a success story for ABA.

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.

M said...

someone else has already said this basically, but the people who dislike autism speaks are going to criticize them no matter what. if they have no voices on the spectrum involved, they get criticized. if they do involve a spectrum voice, it's tokenism. they can't win, so i think the criticizers are best left ignored.

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).

John said...

Hopefully, their research will lead to some good. If they can discover a prenatal test for Autism, perhaps they can stop the next Einstien or Newton from being born, preventing the next generation horrific weapon to be deployed by the next generation system of bomb deployment. The millions they get through their misleading ads would be well spent. /sarcasm

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.

John said...

It should be pointed out that ALL the members are scientists or doctors, with the exception of John, including the "parents". I have to wonder, if they can find two scientists/doctors who are parents of ASD's, could they not find a couple who are ASD? Reading the bios, to say that John's stick out like a sore thumb is an understatement. Not to say John isn't qualified, but is does reinforce the idea "after dropping out of high school", any suggestions of his will be soundly ignored.

John Elder Robison said...

John, I appreciate your skepicism, but this same situation (room full of PHDs and me) prevails at the National Institutes of Health. There, the odds are even more against me, in terms of numbers.

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.

John said...

Good luck. I suggest you get them to change your bio. You are a "free ranged" high school drop out that worked in music and electronics. (They didn't even use the word "engineer".) You now own a service station. And you like long walks, music, and you're a "world-class champion eater." Oh, and you wrote a book. They couldn't have slanted you worse if they tried.