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 on. . .

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
March 2012

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.

The post My Appointment to the Interagency Autism Coordinating Committee appeared first on Wrong Planet.

Read on for the entirety of the comments Katie made to members of the Interagency Autism Coordinating Committee.

Dear Members of the committee,

Thank you for allowing me the opportunity to speak this afternoon. My name is Katie Miller and I am here representing myself as an autistic member of society. I am pleased that so many resources are being directed towards the autism spectrum. However, there are a number of issues that I believe are important to express my views on.

Firstly, there is a strong need to improve and make available diagnostic services to a wider population. The number of mental health professionals sufficiently knowledgeable about autism spectrum disorders to properly diagnose and treat individuals on the spectrum is small.

Children have many more opportunities for diagnosis than adults do. While knowledge of autism spectrum disorders is increasing, much of the information health professionals have is false. Others have wide gaps in their knowledge due to receiving medical training in an era when there was little knowledge of ASD. As I’m sure many of you know, many practicing psychologists, psychiatrists, and neurologists received their medical training before Aspergers syndrome was added to the DSM in 1994. Because scientific knowledge about autism is rapidly increasing, I propose research on how to give professionals the best possible information.

Secondly, please use funding to improve the quality of life for people on the autistic spectrum, not to research a way that prevents more of us from existing. I am very concerned with the amount of funding supplied to research with eugenic applications. If a prenatal test for autism is implemented, the autistic community fears that many parents would choose to abort fetuses who test positive. While I take no stand on abortion in general, this is of great concern to me because there can be no reliable way of knowing how happy a child may be in life simply by identifying certain genes. I don’t think it is necessary for me to list the many contributions to mankind made by living autistic individuals, nor to list numerous prominent historic figures suspected of having autism. However, I would like to quote Temple Grandin: “After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves” (Thinking in Pictures p 122).

There are many ways to improve the quality of life for people on the autistic spectrum. One is better education and training of teachers and doctors so that proper treatment and services can be provided to all individuals on the autism spectrum, whether they are greatly or mildly affected by autism. Better assistive communication devices, social skills training, specialized schools, vocational training, specialized career and relationship counseling, and sensory integration therapy are other examples of services the autistic population needs.

Thirdly, Additional representatives who are on the autism spectrum should be placed on the IACC and in workgroups and other areas of research. Nothing about us, without us. We are experts on our own autistic thoughts, ideas, experiences, and needs. No one else has that insight.

Fourth, I, as well as others both on and off the autism spectrum, are concerned about the continued presence of Alison Tepper Singer on the IACC. Her attitude toward autistic individuals and autism, as evidenced in her comments in the film “Autism Everyday” indicates that perhaps the best interests of people with ASDs are not being served by her membership on the IACC. Like many in the autistic and autism communities, I was horrified and outraged while listening to her talk about almost killing her autistic daughter, Jodi, in the Autism Speaks fundraising video, Autism Everyday. Ms.Singer states on camera that she did not drive off the George Washington Bridge with Jodi in the car only because of the fact that she has another child. While the statement itself is derogatory, the most troubling aspect of the incident is that Jodi is playing in the background.

I would like to conclude with the belief that many of the problems autistic people face are not due to autism, but due to society’s lack of understanding and tolerance for neurodiversity. Even the most severely affected, so-called “low functioning” individuals think intelligently, feel like all other humans, and many even make contributions to society. I would like to see more attention spent on promoting an inclusive, tolerant society, and less on trying to cure or eliminate those seen as defective.

Wrong Planet, Washington, DC, March 20, 2008

The post Katie Miller’s IACC Testimony (Autism) appeared first on Wrong Planet.

Various members of the autistic community were present at the meeting to express their discontent with the current state of Autism research. The most memorable comments were delivered by Katie Miller, an autistic advocate who articulately and succinctly denounced committee member Allison Singer of Autism Speaks (who happened to be sitting three chairs down from Katie) for making derogatory comments about the value of autistic life. Read on to find out what exactly transpired.

Autistic Katie Miller delivered her comments in a clear matter-of-fact demeanor and appeared to be the most articulate individual to speak throughout the entire meeting. Consequently, when she got to the part of her statement about Allison Singer, Katie made quite the impact. For those of you who don’t know, Ms. Singer, the vice president of Autism Speaks, said in a fundraising video that the only reason she didn’t kill her autistic daughter and herself was due to the fact that she has a normal daughter.

The director of the National Institute of Mental Health made a comment after Katie’s statement urging people to try to keep the personal attacks to a minimum but many of the other people, especially the autistic advocates, were supportive of Katie. In fact, the head of one state’s Autism society told me after the meeting that she thought the director’s response somewhat hypocritical. Others told me “it needed to be said.”

Ari Ne’eman of the Autistic Self Advocy Network, a nonprofit autistic rights organization, delivered comments after Katie. Ari repeated Katie’s sentiments about Ms. Singer, explaining that the her comments are extremely troubling because they contribute to an environment of hostility towards individuals with Autism.

I was the last member of the public to speak to the committee. People responded particularly well to my last paragraph in which I explained that scientific research should be conducted out of hope, not fear. According to those I spoke with after the meeting, the audience verbally expressed agreement with my points concerning research while I was delivering my comments.

The meeting went exceptionally well overall, although there were some troubling statements made by members of the committee. For instance, committee chair and NIMH director Dr. Insel at one point likened Autism to Polio. He also expressed his desire to “wipe Autism off the map.” Another member of the committee used the term iron lung in a derogatory fashion.

The presence of Stephen Shore on the committee was comforting although the presence of an autistic is mandated by a law that was enacted due to pressure from autistic rights organizations such as ASAN. Stephen Shore did call one member of the committee out for not including autistics in her list of people who need to have input and he also contributed positively to rewording the mission statement of the IACC.

Stay tuned for the complete texts of Ari Nee’eman and Katie Miller’s public statements to the committee.

The post Interagency Autism Coordinating Committee Meeting: Debriefing appeared first on Wrong Planet.

I was required to submit a written set of comments I plan on speaking about on Friday. I’m basically going to be talking about how research needs to be focused on improving the quality of life for autistics. I’ll let everyone know how the committee goes tomorrow. Read my statement to the IACC after the jump!

Members of the Committee,

My name is Alex Plank and I was diagnosed with Autism at age 9. I’m here representing Wrong Planet, a website for people with Autism which I started when I was in High School. There are over 17,000 registered members of this online community who have cumulatively posted more than one million messages about their experiences living with autism. My site has received critical acclaim from the Washington Post and has been mentioned by Good Morning America, Dr. Phil, Fox News, and The View.

It is troubling to continually hear members of my site’s autistic community telling stories about difficulties they face on a day to day basis. Most of these problems are caused by a lack of public understanding of Autism, the absence of any formalized support services in this country, and an egregiously low awareness of autism among medical professionals. Professionals are not equipped with the tools they need to help those of us who are autistic and most importantly, there is a lack of a real understanding of the intellectual processes of autistic individuals.

Consequently, the focus of continuing research should be placed on that which affords autistic citizens a better quality of life. Autism organizations such as Cure Autism Now and Autism Speaks do not see this type of research as a priority. It is unfortunate that such a large percentage of funding is going towards research that provides little to no benefit for the millions of Americans already living with Autism. I am referring to research done with the goal of prenatal screening, a practice that would certainly discourage the many autistics who have been living fulfilling, albeit challenging lives.

I would like to express that there is absolutely no reason to deem an autistic life as any less valuable than another, especially when our intellectual capacity is in no way diminished; many of us have performed in the top percentile of IQ tests and a good number of us have provided valuable services to society. For instance, Nobel laureate Vernon Smith is responsible for creating an entirely new field of economics. He was diagnosed with Autism but is married and leads a fulfilling life as a professor at George Mason University.

By mentioning these individuals, I am in no way attempting to undermine the struggles faced by parents of individuals who are nonverbal. I hear about these struggles from parents on my website every day. However, many of the parents who post about their nonverbal children acknowledge that their child’s autism does not take away their son or daughter but only takes away the ability to communicate with their children.

I am going to refrain from criticizing committee member Allison Singer because the problem we face is much bigger than the comments made by one parent; the forces that lead parents to dehumanize their autistic children are systemic.

What kind of message does it send to the general public when the most financially significant Autism organizations are running public service advertisements that continually employ emotionally loaded terms such as disease and epidemic in reference to autistic individuals such as myself? Keep in mind that people like me make up an extremely large percentage of the 1 in 150 and there is hope for all of us living with Autism.

Marketing guru Seth Godin explains that people (and potential customers) take action in response to three emotions: Fear, Hope, and Love. He states that the easiest way to build a brand is to sell fear. While fear may be an easy way to bring awareness, scientific studies resulting from this fear are inherently biased against the goal of increasing quality of life for autistics who are already living in this world.

In contrast, scientific research done out of hope has the potential to bring about a better quality of life for all of humanity. I personally have the hope that the needs and perspectives of autistic individuals will be better represented by this committee in the future.

Wrong Planet founder Alex Plank plans on delivering this testimony to the Interagency Autism Coordinating Committee on Friday, March 14, 2008.

The post Speaking to the Interagency Autism Coordinating Committe appeared first on Wrong Planet.