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.