Aspies For Freedom

see  the Interagency Autism Coordinating Committee.

http://www.nimh.nih.gov/autismiacc/index.cfm

here is a  snip
>>>>>>>>>>>>>>>>>>>>>>>>>>
P.L. 106-310 specifies that parents or legal guardians of individuals with autism or other pervasive developmental disorders be appointed to the Committee.
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<,

Aspies dont count . when you are aspie you are second rate citizen marked for extermination

Greetings,

I think the problem is more that they are focusing purely on children rather than deliberately excluding those on the spectrum.

Wolfy, that is a problem in itself then. Why is it always a focus on the kids, dont parents realise that their own kids will grow up one day and be disenfranchised from society?

Yes - and I think its one of the main things at the root of the problem.  Its much easier for them to go on the defensive if they think their opposition are trying to interfere with the development and upbringing of children.  They dont even want to consider adults because it makes things much more complicated and more than they are willing to think about.  Maybe thats the point that should be driven home to them.

I would love to know how much information parents of kids diagnosed with autism are given about how their kids are likley to turn out as adults. I wonder if this info, if any is given, is realistic and balanced, and if the info is written in dry clinical jargon or in common sense and everyday language.

I agree with Wolfy that it is important that organisations like AFF try to turn the debate towards facing adult issues.

Why? Officially, AS counts as a pervasive developmental disorder. So how do you deduct from: "individuals with autism or other pervasive developmental disorders" that Aspies are not included?

As Wolfy points out, it is focused on CHILDREN nor ADULTS which is a problem in itself, but nobody is excluding Aspies. They are not listed separately alongside autism, but neither are other PDDs.

Noetic

they want to get the public viewpoint and go out of thei way to make sure they include parent and leal guardians. BUT not the autistics themselves!!!

Jess, we do have a site for kids and teens on the spectrum -
http://www.spectrumhaven.com

Lili, when my son was diagnosed I specifically asked what would he be like as an adult, as he was dx with classic autism/LFA, I was told that no-one knew and it was impossible to predict.
He has developed well, entirely naturally, and I think that many parents assume that a child of 3 with autism will not develop without intensive and expensive therapies.

We need to get the message across that autistic kids can often continue to develop, later than NT kids often, but nevertheless developing.

OK :smile:

Well I phoned Dr. Wagner and left a message. This is her reply

I received your voice mail message regarding the appointment of public members to the Interagency Autism Coordinating Committee (IACC).  You noted that the public members are parents or caregivers of individuals with autism, and not people with autism spectrum disorders.  The public members to the IACC were appointed by the Secretary of Health and Human Services upon the authority provided by Congress in the Children's Health Act 2000.  Although the CHA 2000 specified that public members should be parents, I do not believe that this was meant to be at the exclusion of individuals themselves with ASD.  At this time, there has not been a policy from DHHS on the replacement of IACC public members.  However, people who are interested in possible future appointments can nominate themselves by submitting a letter and resume to me.  I will forward them to the Secretary Leavitt's office, or the office of his designee, when we learn that there is a plan to appoint new or replacement public members.  

Thank you for your interest in the acitivites of the IACC.

Best wishes,

Ann Wagner




Ann Wagner, Ph.D.
Chief, Neurodevelopmental Disorders Branch
Division of Pediatric Translational Research and Treatment Development
National Institute of Mental Health

See even a PHD and smart person like Dr Wagner mispells simple words.  I am in very exclusive company LOL

Does it inspire you to write a letter and apply?
Is it in your area?

People on the spectrum might not have an impressive resume to submit, because discrimination in work or job interview situations against us, on the basis of stuff like body language or personality, can really stuff up a career.

And illegal too, but that doesn't stop them from discriminating against older applicants.  Usually they're smart enough not to say that you're too old for a job.  They just send a form letter that doesn't admit the real reason for rejecting the application.

I don't think it'll make a difference. It's easy enough to make it seem you're choosing younger applicants over older ones for reasons other than their age. Perhaps some affirmative action is needed?

I don't think anything will change soon. Most people's attitudes are that older people should leave the workforce for the young, and it seems that nobody wants to truly challenge the almighty Prevailing Social Norms.