Last night I went to a talk on autism given by Dr. Joshua Diehl, who is an assistant professor of psychology at Notre Dame University. Dr. Diehl is also the director of the For Understanding Neurodevelopment Laboratory there.
The meeting was held at a local high school and was sponsored in part by one of the area libraries. Dr. Diehl began his talk with the upcoming changes in terminology and the history of autisim diagnoses. I was surprised to learn that autism was not formally considered an official diagnosis until the 1980's even though it had been identified as such back in the 1930's and 1940's with the work of Hans Asperger and Otto Kanner. This would explain why I was never diagnosed as autistic even though I displayed many of the "red flag" behavior patterns.
Unlike many other syndromes, such as Downs, there is no genetic test for Autistic Spectrum Disorders (the new catch-all name). There's no blood test. ASDs are primarily diagnosed by behavior. BUT since we are talking a spectrum there is no one-size-fits-all description. Clearly this is a science that is still very much in its infancy.
Dr. Diehl also reminded his audience that ASDs cannot be cured, they can only be treated. And again there is a wide range of treatments, some proven, some not. He said that there are a lot of quacks out there seeking to take advantage of desperate parents. One promising new treatment which is being pioneered by Notre Dame's neurodevelopment laboratory is using robots to teach social interaction skills.
During his talk he stopped several times for questions. Not surprisingly most of the people in the audience were either parents, grandparents or others who had a family member with autism. There were no autistic adults other than myself. (There was one child present that I think may have been profoundly autistic who kept flapping his hands.) And I think if I hadn't spoken up and said that while everyone talks about children, children, children, this is a lifelong condition that does not go away and we need to remember that, he would have continued talking about children and not mentioned adults. As it was I think my being there and being willing to speak up put an additional dimension to his talk. Afterwards a woman came up to me and thanked me for speaking out. She said her nephew was 45 years old and had just been diagnosed. She understood what I was talking about, that he too had fallen through the cracks and even wanted to commit suicide.
But why wasn't he present? He should have been there as well! Perhaps even more so than some of the others. Because as I reminded everyone, this is something we LIVE with every day. To Dr. Diehl, autism is a theory. He can only know it from the outside. And at the end, when he was recommending books and videos and websites (notably Autism Speaks) I spoke up again. I said that there are several websites that are run by and for people on the spectrum and if you want to know about autism these are the voices of people who have autism. I told them to check out Aspies Central and another well-known forum just to name two. And that Autism Speaks is rather controversial in the autism community.
Our voices have been absent from this dialogue for too long. We have let others do the talking about us and for us. It is time that we start taking part. We need to be involved in autism research as well. I know how powerless I felt as a child being forced to participate in therapies that I did not understand and had no voice in. No one wanted to hear what I had to say. But we NEED to have a say. It is our lives that are involved!
The meeting was held at a local high school and was sponsored in part by one of the area libraries. Dr. Diehl began his talk with the upcoming changes in terminology and the history of autisim diagnoses. I was surprised to learn that autism was not formally considered an official diagnosis until the 1980's even though it had been identified as such back in the 1930's and 1940's with the work of Hans Asperger and Otto Kanner. This would explain why I was never diagnosed as autistic even though I displayed many of the "red flag" behavior patterns.
Unlike many other syndromes, such as Downs, there is no genetic test for Autistic Spectrum Disorders (the new catch-all name). There's no blood test. ASDs are primarily diagnosed by behavior. BUT since we are talking a spectrum there is no one-size-fits-all description. Clearly this is a science that is still very much in its infancy.
Dr. Diehl also reminded his audience that ASDs cannot be cured, they can only be treated. And again there is a wide range of treatments, some proven, some not. He said that there are a lot of quacks out there seeking to take advantage of desperate parents. One promising new treatment which is being pioneered by Notre Dame's neurodevelopment laboratory is using robots to teach social interaction skills.
During his talk he stopped several times for questions. Not surprisingly most of the people in the audience were either parents, grandparents or others who had a family member with autism. There were no autistic adults other than myself. (There was one child present that I think may have been profoundly autistic who kept flapping his hands.) And I think if I hadn't spoken up and said that while everyone talks about children, children, children, this is a lifelong condition that does not go away and we need to remember that, he would have continued talking about children and not mentioned adults. As it was I think my being there and being willing to speak up put an additional dimension to his talk. Afterwards a woman came up to me and thanked me for speaking out. She said her nephew was 45 years old and had just been diagnosed. She understood what I was talking about, that he too had fallen through the cracks and even wanted to commit suicide.
But why wasn't he present? He should have been there as well! Perhaps even more so than some of the others. Because as I reminded everyone, this is something we LIVE with every day. To Dr. Diehl, autism is a theory. He can only know it from the outside. And at the end, when he was recommending books and videos and websites (notably Autism Speaks) I spoke up again. I said that there are several websites that are run by and for people on the spectrum and if you want to know about autism these are the voices of people who have autism. I told them to check out Aspies Central and another well-known forum just to name two. And that Autism Speaks is rather controversial in the autism community.
Our voices have been absent from this dialogue for too long. We have let others do the talking about us and for us. It is time that we start taking part. We need to be involved in autism research as well. I know how powerless I felt as a child being forced to participate in therapies that I did not understand and had no voice in. No one wanted to hear what I had to say. But we NEED to have a say. It is our lives that are involved!
