Thursday, November 21, 2013

Autism Advocacy. Where do we go from here?

Last week’s furor over the Autism Speaks op ed and my subsequent resignation from their science board may have died down, but some significant challenges remain.  

What we need - a map to find our way

The thing that concerns me the most is that we are a community divided.  The energy and anger directed from one autism faction to another this past week might have moved us toward a constructive goal, if only we could have found common ground.

Because the fact is, we should have a shared goal.  Several goals, in fact. Here are  a few of mine:
  • I want effective early identification of autism across genders/races/cultures/socioeconomic groups so that every child can be matched up with the services he or she needs to succeed;
  • I want us to recognize and support undiagnosed adults who struggle because of autism;
  • I dream of effective and sufficient services for schoolchildren with autism;
  • I wish for insurance coverage for autism therapies, for adults and children;
  • I want to see community supports for adults with autism;
  • I want therapies that work for people with social or communication challenges;
  • I want therapies for the medical complications some people with autism suffer;
  • I want to understand how autism affects our minds and bodies as we age;
  • I dream of “fixes” for the most severe autistic challenges – intellectual/cognitive functioning included.
Do you want those things?  Then “I” becomes “we” and we have a community.  Do you want more?  I can embrace that too.  The fact is, we need to be working toward goals like these, and not against each other.

Why do we do that?

I think the answer lies in words, and how they make us feel.  One video is played; one article is read.  Some people see a cry for help, while others hear an attack on their very being. 

Might they both be valid points of view, albeit poorly expressed?
  • I can understand that a young adult with autism might say, “I don’t want to be changed.  I want the world to accept me as I am.”
  • I can understand the adult with autism who says, “I hate being disabled by autism.”
  • I can also understand that a parent would say, “I’m terrified about what will happen to my child when I’m not here.  He can’t take care of himself.” 
Whatever I may think about the speaker, autism, or disability, I owe it to each of those people to respect their opinion.  Even when I don’t agree.  Because the fact is, I’m not them.  I cannot truly know their lives.

Autism is a very diverse condition.  It touches children and adults, guys and girls, geniuses and folks with intellectual disability.  It’s hard for any one of us on the spectrum to imagine how different another person with autism may be from ourselves.

We must always remember that the most challenged members of our community have the least ability to speak for themselves.  What do we do about that?  Ultimately, we want to help autistic people with major communication challenges, problems in cognitive functioning, and other medical complications stemming from autism.  But that's a long term game - there are no such fixes ready to roll out this year or next.  That said, it's the goal of much basic research which is (sadly) sometimes criticized as wasteful by people who do not recognize the very real medical side of autism.  It's more than a behavioral issue for many of us; schools and community service alone simply are not enough.

What I do know, is this:

We are not going to solve our community’s problems unless we pull together.  Our divisiveness isolates us and that is the last thing we should want.
  • Who’s going to speak for us, to fight for insurance coverage?
  • Who’s our voice in education?
  • Who’s going to educate the public, and build a more accepting society?
  • Who’s going to do the basic research to solve our most severe problems?
  • Who’s going to develop communication or organizational therapies, and disseminate them to the community?

Some say it’s Autism Speaks. Some say it’s the Autism Society.  Some say ASAN has a role to play and others turn to the government.  Is it some or all those groups or someone else?

How could we pull together, instead of pulling apart?

That is my question for you tonight.  I wish I had the answer.  Perhaps together, we can find it.

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” 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.

Tuesday, November 12, 2013

SWITCHED ON is coming - an exciting tale of brain stimulation and life transformation

Alvaro Pascual Leone, MD, Lindsay Oberman, Phd, and me in the lab

Straight off the Random House News Wire:

Jessica Sindler of the Random House Publishing Group’s Spiegel & Grau imprint has acquired North American rights to Switched On by John Elder Robison, with a Foreword by Dr. Marcel Just of Carnegie Mellon University, and an Introduction by Dr. Alvaro Pascual-Leone of Harvard Medical School.

Robison is the author of New York Times bestseller Look Me in the Eye, a moving memoir of his life with Asperger’s syndrome. Switched On will trace his fascinating journey after having his emotional intelligence “unlocked” by a revolutionary new brain therapy called Transcranial Magnetic Stimulation (TMS) that is being pioneered at Harvard Medical School. TMS represents a new frontier of scientific possibility for people with autism spectrum disorders, as well as those living with depression, bi-polar disorder and other conditions. Switched On is a real-life Flowers for Algernon with a happy ending, a compelling memoir that blends Robison’s brilliant storytelling abilities and humor with cutting-edge science, and a message of hope for science that has the potential to touch millions of lives. As Robison describes his transformation: “For the first time in my life, I learned what it was like to truly ‘know’ other people’s feelings. It was as if I’d been experiencing the world in black and white all my life, and suddenly I could see everything—and particularly other people—in brilliant beautiful color.”

John Elder Robison is a New York Times bestselling author, a world-recognized authority on life with autism, the Neurodiversity Scholar in Residence at the College of William and Mary, and a member of the Interagency Autism Coordinating Committee for the US Department of Health and Human Services.  John has served on boards and committees for the National Institutes of Health, the Centers for Disease Control, the World Health Organization’s ICF autism core set project, and many private foundations.  John is also a member of the International Society for Autism Research.  Sindler acquired the project from Steve Ross, Director of the Book Division at Abrams Artists Agency.