Wednesday, November 13, 2013

I resign my roles at Autism Speaks


It's been two years since I wrote this essay, as I sat on a plane overwhelmed by the latest outrageous commentary from Autism Speaks.  Since then the Wrights have resigned/retired, and Liz Feld is stepping down as president.  But will the organization change in a meaningful way?  Only time will tell.

Meanwhile we are on to other challenges, like building neurodiversity on campus and developing high school to work transition programs.

I also invite you to read these thoughts on neurodiversity, now and two years ago



In early November 2013, Autism Speaks founder Suzanne Wright published an op-ed piece that laid out her views on autism, and what we should do about “the problem.”  Those of you who follow my writing know I am a strong believer in science, and the promise of new tools to remediate the ways autism disables us.  However, there is a vast gulf between the tone of Mrs. Wright’s words and my own.  I believe we see the situation rather differently.  As an autistic person this is a time when I must give primacy to my own life experience and feelings.

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches.  It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy.  Some of us feel “totally disabled” and others feel “totally gifted.”  Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

Consequently, I support the idea of changing society to make it more accommodating for people who are different.  I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people.  I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring.  Both are touched by autism, and it's part and parcel of who we are.  That's why we face such a difficult challenge, to keep the gifts while relieving the suffering.  It's immeasurably harder than simple disease fighting.

If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against.  At the same time I realize people are people, and if I act like a jerk, I will be treated as one.  I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.

If I can’t do something, and I want to be able to do it, I feel it’s my right to ask for help.  At the same time, I recognize that society must be there with the tools to fulfill its part of the bargain.

Not everyone wants help with disability and suffering, and I support their right to exist and be accepted just as they are.

The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect.  Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help.  As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.

Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own.  She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage. 

I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks.

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video.  The most recent “Autism Speaks Point of View”  http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people.  We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support.  There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.  We have delivered very little value to autistic people, for the many millions raised.

I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today.  I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community.  I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.

One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion.  Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts. 

This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.

Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.  Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism. 

No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.  I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.

Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults.  And the fact is, that is the majority of the autistic population.  I’ve made that point in the past; apparently to no avail.  I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.

Consequently, I have decided to resign from the Science and Treatment Boards, which are my only formal connections to Autism Speaks.  I’m sorry to take this step but I feel I’m left with no choice.

Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power.  It could do a lot of good, if directed differently.  I hope that happens one day.

If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion. Until then, it’s time for me to bow out.

Best wishes
John  Elder Robison
November 13, 2013

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.


216 comments:

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Marc Beek said...

Emancipation of a minority can only be succesfull when the to be emancipated have a leading role. The discription of Autism Speaks can internationally be compared with the Dutch "Nederlandse Vereniging Autisme" or the British National Autistic Society. Isn't it time for people with autism to unite globaly?

Eileen Simon said...

My son is now 51 years old. He did not speak until he was nearly six years old. He taught himself to speak by first learning to read. He is still not able to live independently. He lives in a group home run by a contractor to the Massachusetts Department of Mental Health (DMH). Now DMH is saying that they may not be able to provide housing for all “consumers” in the DMH system.

I am now in my twilight years. At best I may live a decade or two longer. If he comes to live with me, what happens when I am gone? I am very worried that my son will be out on the streets. He now has “metabolic syndrome” and diabetes from all the psych meds he has been given. He can’t manage these problems on his own, even with the help of so-called special teams that provide out-reach to the homeless.

How lovely, and wishy-washy, to say that society must become more accepting of people like my son. He needs help, not acceptance. Please wake up. Autism is a serious disability, not just a “difference.”

John Elder Robison said...

With all due respect, Eileen, it is not wishy washy to say society must be more accepting and supportive of people like me, or your son. It is essential. If that came true, you would not have to worry so terribly about what will happen to him when you are gone.

If you follow my activities, and my writing, you should know that I am a strong advocate for the development of medical therapies that ease suffering and improve functional ability for our more serenely impacted population. In fact, that message should be expressed yet again in the IACC Strategic Plan when it's released early next year.

Respect, accommodation, and the development of tools, therapies and treatments are not mutually exclusive. They are complimentary and equally important.

Eileen Simon said...

John, thank you for taking time to respond to my early morning post today.

I have submitted a proposed addendum for the IACC Strategic Plan to be discussed next Friday. How could developmental language disorder be so badly overlooked in that plan?

For more than a decade, since 2003, I have been trying to initiate a conversation about the evidence published in the October 1969 issue of the Scientific American, where William Windle reported damage to nuclei in the brainstem auditory pathway caused by asphyxia at birth. In human children this should be considered an impediment to learning to speak, and an impediment to normal maturation of the language areas in the cerebral cortex.

Why have my comments been ignored? Why are all public comments ignored by this committee? Talk about respect, the IACC is most disrespectful of those of us most seriously affected by autism.

But thank you again for responding to my post this morning. I hope we can engage in further conversation. Your baby picture, by the way, looks very much like those of my son Conrad. His death at the age of 31 is an outrageous example of how horribly disrespected people with autism can be.

John Elder Robison said...

Eileen - It's not done yet, but I think you will find the update to the plan will call for more attention to be paid to those with more severe impairments. I agree this is an area where there is little progress from the perspective of the families.

However, there is significant progress in understanding the mechanisms my which severe autistic disability occurs. Some of that is via genetics; surely others with symptoms of severe autism may have suffered some sort of injury, where by a process like oxygen deprivation, chemical poisoning, or something else.

That's the first step. We need to understand what went wrong, if we are to devise medical cures. I'm sorry to say that meaningful medical help for the most severely impacted is in most cases some years away.

That - to me - makes understanding, acceptance, and improved community support all the more important.

It's not that the severely disabled population is ignored by science. In fact, most of the basic-level research is directed right at this group. Rather, the issue for families today is that translation of tomorrow's discoveries into useful therapies is still a 10-15 year process barring some new discovery that might translate faster. I wish I had a quicker answer.

Many people feel the public comments are ignored at IACC, because our agenda never really permits any extended dialogue or discussion. To do that, we would need to go to a two-day meeting format and that is not my decision to make. We are already limited by budget. Many of us are volunteers. I don't know if such a change is practical, yet I understand the community's frustration. Remember I don't make those decisions, nor do the other members at the table around me. Congress mandated what we are do to - the Strategic Plan being one of our charges - and they appropriate the money for it to happen. In this case, they did not appropriate enough to fully address the expressed concerns of people like yourself.

Speaking for myself, I do read the comments and I try and keep the ideas expressed in mind when I act or speak for the IACC

Eileen Simon said...

A mechanism by which severe autistic disability occurs should have been recognized decades ago. Two years after my son Conrad was diagnosed with autism, the October 1969 issue of Scientific American arrived in my mailbox. The article by William Windle on asphyxia at birth had pictures of damaged nuclei in the brainstem auditory pathway, and I realized that could explain Conrad’s peculiar echolalic speech. He was not hearing syllable and word boundaries, thus recited whole phrases badly out of context.

I published a paper on this (Simon N, Arch Gen Psychiatry. 1975 Nov;32:1439) as part of my dissertation research. I presented a summary five years ago at the IACC meeting, online at
http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf

Can cures for brain damage be found? Windle’s article should have led to prevention more than four decades ago. Instead, obstetrics began ignoring traditional teaching that a baby should be breathing before terminating placental circulation by clamping the umbilical cord. In the mid 1980s a new protocol to clamp the cord immediately after birth was adopted. This will cause asphyxia if the baby has not begun to breathe, and damage of the kind reported by Windle will occur.

Acceptance of brain damage does not help relieve the grieving and hardships involved in raising a brain-damaged child. I am glad to hear you read the public comments submitted to the IACC. I hope you will re-read some of mine, and request they be discussed by the committee.

John Elder Robison said...

Eileen, I am aware that the WHO suggests delaying cord clamping and this is a matter for discussion prior to many births today. Certainly delayed clamping and cutting is consistent with evolution; meaning I'd be inclined to trust delayed clamping more.

But is that a major cause of autism? Probably not. Ongoing genetic and environmental studies show too many paths into autism for one explanation such as this to predominate. Is it a possible cause of some autism? Quite possibly.

Is it worthy of study? Probably but the existing recent clamping studies I saw in Pubmed looked at some thousands of infants without finding differences in autism rates. That said, the jury remains out on the wisdom of the practice.

Clearly you believe it's a factor in your own family. I know nothing of you or them and I would not presume to argue with you.

I think the existing genetic and environmental research is headed in a good direction for a large percentage of the more impacted population. I just think the translation time is going to be longer than people want, and of course success is not assured.

You made a remarks about "Accepting brain damage" which suggests you may not have grasped my point about societal acceptance and accommodation. Such AandA would mean there would be more places where people like your son would be supported and assisted. It's not about "accepting brain damage" It's about accepting and supporting all people and helping them as best we can, which we work to relieve major disability that is at present not treatable.

What else would you propose for the short term for people like your son. I see your opinion re clamping, but that does nothing for those living with autism today. Acceptance and support, backed up by research and ultimately remediation, is the reality we have

Eileen Simon said...

John - Thank you for your conversation here with me. It helps me see why my viewpoint has been misunderstood and dismissed as frivolous by IACC members and others.

Autism has many causes. Most children with autism are exceptionally beautiful. A cure or continued growth is what we all aimed for. Brain damage is not what most people want to consider. When a child doesn’t learn to speak, and doesn’t respond or hyper-reacts to sounds, we want a hearing aid to be invented.

When a child suffers a concussion or becomes ill with encephalitis, we hold out hope for recovery by “neural plasticity.” Sadly, we do know that children who sniff glue or experiment with “recreational” drugs often go over the brink, but we hang onto the hope for recovery.

Over the past four decades, searching for answers, I have learned that nuclei in the brainstem auditory pathway are susceptible to damage from toxic substances as well as oxygen insufficiency. This has been discussed in the medical literature since Wernicke in 1881 described bilaterally symmetric brainstem damage in cases of alcoholism and one case of sulfuric acid poisoning (translated by Thomson AD et al. Alcohol & Alcoholism 43:174, 2008), and I have been attacked as rude for comparing autism to alcoholism.

However, autism is associated with fetal alcohol syndrome and prenatal exposure to valproic acid. Autism as part of PKU (phenylketonuria) is likely the result of toxic injury from abnormal metabolites like phenyl-pyruvic acid. Auditory system damage has been described in several papers on toxic injury.

I have tried to point out to the IACC a seminal paper by Seymour Kety, which reported higher blood flow in nuclei of the brainstem auditory pathway than anywhere else in the brain (Bull N Y Acad Med. 1962 Dec;38:799, free online via PubMed). High blood flow makes the auditory system more susceptible to damage than any other area of the brain. I wish they would bring this up for discussion.

Autism has many causes. All causes are likely to affect the auditory system, and undermine a child’s ability to learn to speak.

Ettina Kitten said...

"Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target."

Unfortunately, you're wrong about that. The Muscular Dystrophy Association has been widely criticized by adults with MD, because of their 'pitiful dying children' approach to fundraising.

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Kelly said...

John, I am late to this, but I THANK you for your words. I read Look Me in the Eye for a class on autism and ADHD, and thoroughly annotated it because I related. I was diagnosed with ADHD (FINALLY) at 36, nearly two years ago and the right treatment has revolutionized my life. It's allowed me to put the puzzle pieces of my often shambolic and painful life together, and this entry speaks to my experience as a person who is not neurotypical and has suffered greatly for it. I've benefitted tremendously, too - and I am a strong advocate in my position as teacher for my students with ADHD and other differences, teaching them coping skills, self advocacy, and most of all, self acceptance. Every neurological difference confers gifts, and it's so important to find those gifts and cultivate them. It's even more important to me now that my two very young children are not neurotypical. THANK YOU.

Leslie Newell said...

Thank you, John. I was diagnosed with mild autism as an adult. I read one of your books sometime beforehand, and it gave me a lot of insight about you and how autism could affect people.
I just read your reasons for no longer being with Autism Speaks, and you said things that I agree with.
We all need the knowledge that you and Temple Grandin can give out.

Genevieve said...

Thank you for writing this piece and your advocacy. <3

LML said...

Dear Mr. Robison,

I know this is four years later, and I don't know whether or not you still receive notices on comments posted to your older blog posts, but I wanted to add my deep THANKS to you for speaking up for yourself, for my son with Aspergers, and indeed for hundreds of thousands of others on the autism spectrum who need understanding, empathy and support rather than conformity and cures. We NEED your voice and your leadership more than ever!

THANK YOU,
Lisa Gatti
Partnership for Extraordinary Minds

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