Comments on: Combating Views on the Combating Autism Act

By: Autism Vox » The Age of What Diagnosis Does Your Child Have

Autism Vox » The Age of What Diagnosis Does Your Child Have — Sat, 03 Mar 2007 07:54:59 +0000

[...] Why do parents of autistic children still feel that, for every “autism awareness” campaign, all those puzzle car magnets, so many books, federal legislation, etc., etc., people still respond with that silence when we say “my child’s autistic”? [...]

By: Estee

Estee — Sat, 06 Jan 2007 23:13:55 +0000

I agree that we need to understand autism and make way for accepting our children and providing better education that understands autism. I have noted to re-term the act to “The Understanding Autism Act.” But I’m not an American.

By: Kassiane

Kassiane — Thu, 07 Dec 2006 08:41:49 +0000

Idiots in congress…

I demand transportation back to my faerie parents. Since all the rhetoric is that we’re changelings. Fine. Find where those of us who had the audacity to grow up belong and transport us there.

This means you, Ms Clinton.

By: Kristina Chew, PhD

Kristina Chew, PhD — Wed, 06 Dec 2006 23:17:49 +0000

Now that the bill has passed the House (see Texas lawmaker works out compromise on autism bill) we will see what course things will take—-it will be interesting to see how the “regional centers of excellence for epidemiological research” are developed.

By: Lisa/Jedi

Lisa/Jedi — Wed, 06 Dec 2006 13:32:38 +0000

I’m with Kassiane on this. I am infuriated by the “fighting” language used in the bill & am not confident that anything built on such a foundation can be as helpful or healing as it needs to be. It may be naive, but my Jedi instincts tell me that the way we think of things is the way they become, & if the country at large thinks we’re “combating” autism then combat we will. I no more want my son to be the target (beneficiary?) of such legislation than I would want him to be canon-fodder in some foreign war. I know that our acceptance point of view is being ignored because when I finally heard back from Hillary, after sending her an email last summer explaining my objections to the wording of the bill, what I received was a “proud sponsor” form letter that addressed none of my concerns. Oops- naive again, to think my esteemed representative would actually read what I had written… I agree with Leila that we need to become organised & stronger, but I’m dead against the drama that has gotten AS all their publicity. I guess the message that families & individuals can grow & thrive while living with autism just doesn’t have the pizazz of theirs…

By: Kassiane

Kassiane — Wed, 06 Dec 2006 06:42:31 +0000

If I cant get to my home planet and i don’t get services (they aren’t in there, at least not in any meaninful form), and no autistics get actual input (it’s in there but they’ll diagnose hilary or something and decide that counts) then I at least want my powers.

Seriously.

IT ISN”T JUST CHILDREN.

1 1/2 million autistics.

1 million of us are adults.

Want us marching on washington? We have good argumentative skills, many of us. Or browbeating skills.

By: Leila

Leila — Wed, 06 Dec 2006 02:30:34 +0000

I just wanted to add an example to show how research is focused on more than prevention and early intervention. Take the study on oxytocin for instance… It’s being done in autistic adults by the Mt. Sinai School of Medicine in New York with great results. Not only it seems to reduce obsessive and repetitive behaviors and anxiety, but it also helps develop theory of mind.

Oxytocin is a hormone that plays a role in bonding, social memory and social cognition.

If more studies support those results, and the medication becomes mainstreamed, this will improve lives of autistic people throughout their life span. I think this is exciting news.

By: Kristina Chew, PhD

Kristina Chew, PhD — Wed, 06 Dec 2006 02:12:54 +0000

Thanks again, Leila—-I’ve the interest in, and the wish for more emphasis on, education and services for adults and older children as all of our kids are only going to get older. While I would prefer something besides the language of “combating” and “cure,” it is indeed good to see autism mentioned in the national spotlight. Of course early intervention is a sine qua non but—-as an autism consultant said to me—-”early intervention” now extends to high school age…..

By: Kassiane

Kassiane — Wed, 06 Dec 2006 01:36:57 +0000

If I’m kidnapped, I want my fairy powers.

The CAA needs to be seriously rewritten.

Or is there a provision that we will magically go back to our fairy parents when we turn 18? I sure didnt go back to mine.
(yep, eugenics and boondoggles make me snarky)

By: Leila

Leila — Wed, 06 Dec 2006 01:01:40 +0000

Geez, I’m not a policy maker, but as far as I can tell the measures included in the bill are beneficial, and the organization’s networking was very successful. The word “combating” sounds even worse than “cure”, but right now I can’t come up with a different slogan that would be powerful and appealing enough.

I understand that you feel the research would be more focused on “prevention” and “early intervention” rather on addressing the needs of autistic older children and adults. However the research on better medications and behavioral/social skills therapies can also improve the lives of autistic individuals of any age.

There’s another positive side. By putting autism in the national spotlight, this bill might also help the other autism groups/points of view to be heard in major news stories. Those groups have to seize this opportunity.