Thursday, March 29, 2012
Last fall, President Obama signed the Combating Autism Reauthorization Act, which ensures that Federal autism research and services programs will continue without disruption. The act also directs the Interagency Autism Coordinating Committee (IACC) to continue charting a course for autism spectrum disorder research while simultaneously advancing the delivery of needed services.
Shortly after the act was signed, I received a call asking if I’d agree to be nominated to serve on the Committee. I agreed. Yesterday, I received the news of my appointment by HHS Secretary Kathleen Sebelius.
Read the official release here
As a member of the IACC I will do my best to encourage research into tools, therapies, or treatments that will help remediate autistic disability in all its many and varied forms. I’m keenly aware of the breadth of the autism spectrum, and the very different needs and issues of our community members. I will do my best to advocate for all autistic people.
Those of you who follow me online know that I’ve served on public and private autism science boards for several years. This appointment represents an opportunity to continue that work at a different level and I am honored to have been chosen.
IACC is also involved in planning the delivery of autism services, and I know that’s an area of great concern. I grew up as an autistic person in a time when people like me didn’t receive many services. I have a son, now 21 years old, who grew up with Asperger’s in a more aware era. Those experiences will inform me as I work with other IACC members to best structure and allocate our service resources.
In the past, people have asked my stance on neurodiversity and some people’s expressed desire for an autism “cure.” I’ve written quite a bit about that over the years but I’d like to restate those views briefly here.
I support the idea that the world needs a diverse pool of thinkers, some of whose minds may be rather different from the norm. I take pride in being one of those non-standard individuals. In my life, I’ve seen many instances where my “different” brain allowed me to solve problems others failed to unravel. That’s the good side of difference. At the same time, I have experienced disability while watching others succeed at common life tasks that I could not complete, or completed only with difficulty.
My life experience has shown me both sides of being different. I celebrate people who succeed by being unique, while supporting the development of tools to help us in the areas where we struggle, and allow more of us to live independent and productive lives.
I believe all people deserve to be treated with respect. I’m very concerned by the growth of both online and schoolroom bullying, and I want to see more and better accommodation for autistic people in schools and workplaces.
When it comes to calls for an “autism cure,” I should first say that I strongly support all work that remediates autistic disability. For some that might be speech therapy. Others struggle with social skills, loneliness, and chronic unemployment. The ways in which autism disables us are many and varied and I support research to mitigate all those things.
Autism is a crushing disability for many people, and I strongly support research that will relieve that burden to autistic individuals, families, and society. I know it’s easy to look at autistic people like me, and draw wrong conclusions as to the true burden autism places upon the average person. As much as I celebrate diversity, I cannot celebrate any condition that prevents a person from living independently, forming relationships, and joining society in a productive manner. With the CDC’s announcement of its newest prevalence data the need to achieve this goal is even greater than before.
I support genetic research that helps us understand the foundations of autism and thereby leads to better treatment and improved quality of life. I’m aware of the controversy regarding the possible future development of prenatal tests for autism, but I do not let those concerns blind me to the vast potential genetic research offers to autistic people living today.
Though I strongly support the goal of remediating autistic disability, I am opposed to the particular phrase “curing autism” because that implies ridding the world of people like me. I’m all for curing disability, but autistic people – in our many forms – are essential to humanity’s success and I celebrate our present and future existence.
When an autistic person hears outsiders call for a “cure for autism” he or she often takes that as a personal attack, just as a Jewish person would be offended by a call to “rid the world of Jews.” I’m sure many who call for a cure do not understand that autistic people see their words that way; I hope greater awareness will result in a recognition that we are entitled to a rightful place in the world, without hiding our place on the spectrum, even as we hope and strive to live our lives free of disability.
When I talk to mothers and fathers who say, “I wish I could cure my son’s autism,” and I explore that phrase with them, I most often find we want the same thing. We want a person who grows up comfortable, happy, productive, free of suffering, and able to engage humanity and the world as he or she chooses. We have a long way to go in reaching that goal, but I am confident we are making meaningful progress.
I hope my service on the IACC helps us attain some of those shared goals.
John Elder Robison
In the words of the IACC website,
Objectives and Scope of Activities
The Committee will (1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with autism spectrum disorder; (2) monitor Federal activities with respect to autism spectrum disorder; (3) make recommendations to the Secretary of Health and Human Services (Secretary) regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder; (5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and (6) submit to the Congress such strategic plan and any updates to such plan.
Description of Duties
The Committee will coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee's primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies' activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.
Posted by John Elder Robison at 1:28 PM
Tuesday, March 13, 2012
Last year I participated in the Autism Speaks-CDC workshop on evaluating changes in the prevalence of autism. Now that the CDC has published the meeting summary, I’d like to offer a few thoughts on the discussions and findings that came out of this meeting.
I wish I could say we had a solid conclusive finding, but we didn’t. If anything, we emerged with more questions than we had when we started. That said, the meeting did produce worthwhile results that will help shape plans and directions for the work ahead of us.
At the outset, we agreed that autism diagnoses have become far more common in recent years. However, we could not decide how much of the increase is an artifact of greater awareness and evaluation as opposed to a true change in incidence. It’s possible both things are happening. It may be that we are becoming more aware of autism at the same time as it is becoming more common. Or not.
We talked about studies that found “pockets of autism” in particular places and demographic groups. For example, we discussed a study that found autism was more common near interstate highways in California. Does this suggest that traffic is contributing to an overall increase in autism? We don’t know, because it’s unclear whether this situation is new or long standing.
Even when a situation of high prevalence is obviously new – the “Geek enclaves” around tech companies being a good example – we don’t know if this is contributing to an overall increase, or simply concentrating autistic people from a wide area into a single spot.
We also lack clear understanding about recognized differences in autism prevalence among different ethnic groups and nations. I don’t think we will fully answer questions like this until we have a definitive medical test for autism and put cultural and national differences in evaluation and diagnosis to rest.
Over the last decade we’ve discovered a number of genetic mutations and a few environmental factors that are implicated in autism. The trouble is, none of these things are new to the world, either. Take mercury as an example. Mercury has been around longer than humanity. People have handled and even eaten the stuff as long as we’ve had industry. Have you ever heard the phrase, “mad as a hatter?” It refers to people in the hat-making trade, who suffered mercury poisoning 200 years ago.
By way of context, we discussed the broad and alarming rise in childhood allergies and sensitivities. Two well-known examples are asthma and peanut allergy. Fifty years ago the former condition was rare among schoolchildren and the latter was almost nonexistent. Today, both are commonplace.
Many researchers in many fields are trying to understand the increase in these conditions. Could some common factors be contributing to all of these “epidemics,” including autism? It’s certainly possible.
One excellent question is this: Are we more susceptible to immune disorders in general now, and if so, why? An autism causation-immune disorder connection, combined with a generally greater sensitivity in children today could be a scary prospect. Is it real? We don't know, and we're working hard to find out.
Some laypeople blame it all on “Western diet and lifestyle,” but that is not specific enough for us to take real action. There are many questions to explore, but answering them will take years of additional study, and the answers may simply lead to more questions.
For example: Is the proliferation of genetically engineered food affecting us in unexpected ways? Is factory farming harming us by largely eliminating the diversity in our food supply (genetic and otherwise)? Is our shift away from outdoor activity in favor of sedentary activity impacting conditions like autism?
These are all good questions. I wish I knew the answers. I will say this: I do my best to eat a wide variety of organic foods, walk and engage in physical activity as my ancestors did. I don’t need a study to show the personal benefits of that lifestyle change.
Unfortunately, none of that helps us understand today’s rise in autism diagnoses. The essential problem is this: Since we don’t know what causes most autism, it’s difficult to make sense of prevalence findings.
Just consider the thought process when we find a town with a high incidence of autism. Is it because the doctors are particularly observant there? Is it because there is a chemical plant nearby? Is it because there is a science company there, and they employ a lot of people on the spectrum who produce autistic offspring in greater than average numbers?
All are possible explanations, but the history of science and discovery tells us the true explanation may well be something none of us imagined. Yet.
If there was one thing we agreed on at this workshop, it was the broad scope of what we do not know. One outcome of this workshop was a “punch list” of things we should be doing to move our understanding forward in meaningful ways. Without additional knowledge, we can speculate, but guesses aren’t answers, as much as we want them to be.
Another central issue is this: In the absence of a hard test for autism, we must rely on observation and discussion to diagnose it. That makes our diagnoses “softer” than we’d like. A person who was diagnosed with mental retardation in one decade might well have been diagnosed autistic the next. Even more confusingly, he could end up with both diagnoses, which really confounds our efforts to evaluate prevalence.
Many people who receive Asperger diagnoses today would not have received any diagnosis thirty years ago. I know because I am one of these people. Is there any evidence that the population of Asperger people is really growing? I didn’t see any, but neither did I see any evidence that it’s not. All the numbers are going up.
Some of the questions we study sound funny, but I know them to be serious. For example, one study asked, “Is autism diagnosis contagious?” In fact, the likelihood of a child being diagnosed with autism is much higher if he’s in a community that contains other autistic kids. No one is suggesting people “catch” autism from the kids around them, but parents and professionals may well “catch awareness” from the first autistic kid they encounter.
Factors like that, and today’s broad public awareness of autism, certainly contribute to the rise in diagnoses.
For many years, we have recognized that one to two percent of the human population has significant developmental disability, such as severe autism or intellectual disability. A much larger percentage of the population has less severe developmental disorders, which include Asperger syndrome, attention deficit and hyperactivity disorder (ADHD) and learning disability. The total affected by these less severe differences is quite large – at least ten percent of the population according to studies of school-age children.
That’s a big umbrella, enough to contain the whole autistic population and then some. Is the umbrella growing, or is autism just taking a bigger share? I wish I knew.
Posted by John Elder Robison at 2:30 PM
Monday, March 12, 2012
Are you near Bordentown, New Jersey? If so, please join me this Friday, March 16 for a unique program at Newgrange School. I’ll be speaking at Valley of Central New Jersey, Ancient Accepted Scottish Rite, 103 Dunns Mill Road in Bordentown. Registration is required and there is a fee for this event.
BE DIFFERENT goes on sale in paperback on Tuesday, March 20. I'll be on the radio all day doing shows around the country.
Next I’ll be in Milwaukee for a talk sponsored by Boswell Books. They have partnered with Autism Speaks for a 7:00PM event on Thursday March 22 at their 2559 N Downer Avenue store. Your ticket gets admission to the event, a book discount, and makes a donation to Autism Speaks. I'll talk about Being Different and also answer questions about the latest research and programs Autism Speaks is funding. Sign up here.
On Friday March 23 I’ll be at Brookline Booksmith in Boston for a 7PM free talk and book signing.
After that, I'll be in Kansas City, St Louis, and Chicago. The following week I'll be speaking in Toronto.
Then I have a two week break before heading to the College of William and Mary in Williamsburg, VA, Towson University just outside Baltimore, and the CDC and Atlanta Consortium Autism Conference in Atlanta.
I do hope to see some of my online friends out on the road. It's going to be a busy spring!
Posted by John Elder Robison at 3:51 PM