Speaking to the Interagency Autism Coordinating Committe

I was invited by Ari of ASAN to speak at the Interagency Autism Coordinating Committee this Friday. The IACC, for those of you who don’t know, is a body of the National Institute of Mental Health (NIMH) that determines where to give grants for Autism research. In other words, this is the part of the government that chooses what gets studied about Autism. Like most government meetings, this one is being held in Washington, DC so all I have to do is take the metro.

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.