Autism and Genetic Research

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I just attended my first AS support group today. Overall, the support received was good. It was good to meet others with similar conditions, and the speaker was genuine. Along the way, I picked up a few pamphlets and took a book on AS out of the library for a few weeks. All went well and good, until I came across this pamphlet:

"NIH Center of Excellence in Autism Research"

I opened it up and began reading it. Here's what I found:

"Finding the Genes for Autism" --> "This is a national study, blah blah blah" ... "Families with 2 or more children older than 2.5 years of age with an Autism Spectrum Disorder of any level of severity are needed to participate in a diagnostic interview, family history interview and donation of blood sample."

There were also requests for participants to enter into a Family Study and a Language Processing Study.

I am encouraging people to avoid participating in this blather. Submitting yourselves to autism research centers makes you a statistic on a piece of paper. These statistics will thus be calculated, and the result will be spread to who knows where. Right then and there, you've lost control. You have no control over the results of these studies and what the information is used for.

Much of this research could be used to direct us to treatment programs that could have unwarranted effects.

Much of this research could be used to influence genetic engineering of children, such that they may not be born autistic in the future. Parents may love to do this if they had the chance, which is completely tinkering with nature.

Please! Let us be accepted for who we are!

- Ray M -

You might be interested in this

http://www.abc.net.au/rn/healthreport/stories/2006/1619796.htm

14MB and 30 minutes long approximately.

Note: there are some errors in the transcript that will be obvious to anyone who is studying Autism.

It includes interviews with John Constantino, Associate Professor of Psychiatry and Paediatrics at Washington University School of Medicine in St Louis, who is studying family links with Autism. 90% of autism is linked with families not other causes. Looking at my family - I find that easy to believe.

And interviews with Eric Fombonne, Professor of Child Psychiatry at McGill University in Montreal. Eric's research was able to exclude links between Autism and childhood vaccination.

I think it is unlikely that parents would want to mess with the AS genetics of their children - because chances are (4 to 1) they are also AS - both of them (stats according to John C's second interview).

What the right studies could do is improve the availability of resources like diction classes / speech therapy and social skills training. So AS people can get by more easily in NT dominated society - I think that would be a good thing. If AS is stopping you from getting and holding a job - any resources to help out with that have got to be good too.

I can't imagine the genetic engineering thing happening any more than I can see athletes being forced to breed only with other athletes. We need aspies - engineers, doctors, farmers, research scientists, emergency workers etc.

edit - fix broken url code

I have been on several different parent groups - not identifying myself as someone with AS - and I can tell you that the vast majority do not see the genetic connection because they are so convinced by the mercury/vaccination theory. And the "curebies" as they are called - are out to do just that CURE autism - not accept it. That is why I think so many demand the "people first language" and try and correct anyone who even uses the word autistic. If someone says it is preferable to say "person with autism" - than they have separated autism from the person and can say all kinds of things about it (epidemic, scourge, ect). However, they could not do that with the term "autistic" because that would belie the intention of getting rid of autistics. There are many who do not see anything positive about autism and think there is a normal kid trapped in a shell (one T-shirt shows a butterfly trapped in a cocoon). So, I think that autism would quickly go the way of Down Syndrome if they developed a pre-natal genetic test for it. Especially with all the sensationalistic language used by these groups about autism and their claims of the huge cost involved with care.

walk in the rain

You definitely want to print the transcript and leave it lying round your parent groups. Given their attitude - I'd do it anonymously.

http://www.abc.net.au/rn/healthreport/s ... 19796.htm#

They've fixed the transcript errors I spotted. Doesn't mean there aren't a couple more but the transcript definitely makes more sense now.

I think nobody likes being told that something inherently part of them is wrong or broken. I think that is why seeing aspergers as a good thing (I do) and separating aspergers and autism from general academic intelligence is important. You can be academically very intelligent or very stupid or anything in between *and* have aspergers. However these parents see it as a flaw and want to blame someone.

Eric has well and truely debunked the mercury in the vaccine hypothesis. I can see clearly in my family what John C found - it runs in families. And not everyone who is an aspie is a miserable social failure - you can learn to get along with other people.

I emailed them to change "PDD and OS" to "PDD-NOS", which they did, and actually sent me a thank you email.

um....I'm a part of a study at King's College about the molecular gernetics of AS. Oh the joy of having interesting DNA.

If you block scientists from doing research, they'll just reach conclusions based on less accurate research.

There has now been developed a blood test that screens genetically for autism for children and adults, and a genetic prenatal test for autism. The research has become a reality.
http://www.autismprenataltest.com/