Saw something this morning on Good Morning America about a controversial group that is attempting to change how outsiders view Autism. The group Autistic Self Advocacy Network (ASAN) founded by Ari Ne’eman is an advocate for Autism culture and neurodiverse individuals. Ne’eman himself has been diagnosed with Aspergers Syndrome. ASAN seeks to promote understanding and acceptance rather than promote a cure. Ne’eman wants better educational opportunities and services for those on the Autism spectrum. Ne’eman stated even if he could take a magic pill and erase the effects of Autism he would not. According to other Autism support groups Ne’eman and his followers are very vocal minority group that should be ignored. I think both sides of have some valid points and both groups can play a vital role in Autism advocacy.
First, research is needed to find the causes and possible cures for Autism and related disorders. Like other neurological disorders it is often difficult to find a cause for the disease. I know that some suggest there is a link between an increase in Autism and vaccines. I would like to see a study that seeks to determine how much of the increase in Autism is due to the change in standards used to diagnosis Autism and the inclusion of related disorders on the Autism Spectrum.
Support services and educational programs for those with Autism need to be readily available. It is my opinion that one of the biggest problems in the case of Adam Race is lack for proper support for the family. Many good programs exist but finding help for any disability can be difficult at times.
Like all disabilities there is a need for understanding and acceptance. Many people are frightened or disturbed by behavior they perceive as abnormal. The tendency is to look only at the outward behavior not the person inside. Ignorance leads to incidents like the what to 5-year old Alex Barton. Often one of the most difficult things in living with a disabilities combating the ignorance and biases of others. One of the first steps in understanding and accepting those with any disability is look past the label and see the person.
One of the best things about ASAN is that it seeks to provide a voice for those with Autism. My personal experience learning disabilities have taught me that many times the only voices heard by the general public are the experts. Sometime their opinions, research and theories are very different from the actual experiences of those living with a disability. Both the experts and those with a given disability need to be heard.
Ne’eman is also correct that individuals on the Autism spectrum need acceptance. However, I believe it is possible to promote both acceptance and research about Autism and its causes. As an individual who lives with learning disabilities I welcome any research that might reduce its effects.
The most fascinating part of the interview with Ne’eman was his statement was that given the opportunity he would not change his diagnosis. Personally, if I could wipe out the effects of dysgraphia and dyslexia I would. While I have come to terms with my disabilities it still causes me frustration almost on a daily basis. I often get a lot of teasing about being a very clumsy and for the most part it is friendly. Usually, I try to brush it off or laugh along but it still bothers me. As a rule, I refuse to wear those stupid little handwritten name tags that are often required at events. I just don’t like people to see my handwriting even though now I rarely get comments about my handwriting. So, yes if I could eliminate those and other frustrations I would. On, the other hand I would probably keep ADHD, when controlled it really is not that bad.
I believe that finding a cure or the cause of disorders like Autism is important. However, making support services and educational programs available now is vital. All parties should seek to promote understanding and acceptance of individuals on the autism spectrum.
Yes I think that was exactly Kristina’s point, it’s the support services for families and autistics that is critical.
Best wishes
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Great post. People with autism need a stronger national voice. This will continue to lead to better treatment options and outcomes.
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I hope so.
Matt,
You may repost if you wish.
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I thought it was a great interview overall!
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Yes it was.
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I think there is a place for people to see, study and care about the plethora of research showing that older paternal age and the older age of the mother’s father at the time of her birth Cause many cases of severe autism and schizophrenia. The older the father the higher the risk of sperm with damaged DNA leading to problems for offspring. http://ebdblog.com/2006/09/05/paternal-age-and-autism/
http://autism-prevention.blogspot.com/2008/06/older-fathers-older-maternal.html
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I think the reason he wouldn’t change his diagnosis is that people with Autism take in information with every sense they have. We have learned to process data as it comes in in a very limited way but for the Autistic person, every sense is involved and his or her world is a very vibrant, sensorial place. He processes with everything he has and has a very unique perspective on the world which he considers superior to ours. I think it an awesome gift.
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very interesting. I know that people with ADHD & dyslexia think multi-dimensionally and full-color often with sensory memory as well.
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Excellent post, Dee, and quite enlightening! 🙂
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Ty,
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