Tuesday, June 10, 2014

Write congress, urge a no vote on HR 4631

The neurodiversity movement has again succeded in one of their inane crusades, persuading congress to change the name of the Combating Autism Act to the Autism Collaboration, Accountability Research, Education and Support (CARES) Act.  Autism Speaks who funded Laurent Mottron and had John Robison on a science advisory board has also gotten into the act . When this law was originally passed, it was the now defunct Cure Autism Now, that lobbied for it.  The original intent was to do research to find a cure for autism and end this nightmare that affects so many of us.

Ari Ne'eman, John Robison and their cronies found the language in the act offensive and so congress is changing the name of this law while reauthorizing it.

The ND movement has already succeeded in packing the interagency autism coordinating committee with members of their warped ideology.  To date, not a single pro-cure, anti-neurodiversity autistic has been appointed to the public membership of the Interagency Autism Coordinating Committee.

Even when this was called the combating autism act, it was a very bad law.  Not just because of all the members of ND that were appointed to public membership, but the fact that it spent millions of dollars on the CDC's autism surveillance program which gives the phony 1 in 68 number which was acquired by looking at school and health records of kids and counting them as autistic if anything at all suggested they had this condition, regardless of whether or not there was an actual diagnosis reported.  This money does absolutely nothing to help those on the spectrum.  Their other work does nothing to help autistic people.  

Now, the proposed law states that autism should not even be combated anymore.  Is a rose by any other name just as foul smelling as before?  I really don't know.

We need to get rid of this law and allow the private sector to take over.  I wish the government would just return the 260 million bucks this law authorizes to the taxpayers who have a stake in autism.  Hopefully an awesome private sector foundation would support sane scientists who would find treatments or even a cure for this horrible disability from which I suffer every day.  I realize this is an opium-induced dream and there is no way I can make it happen.

One thing we can do, however, is write our congress person, urging them to vote no on this legislation which has the new name that implies we should not try to find a cure for autism.

I've written my congress person.  I hope any American who reads this and agrees with me will do the same. 

9 comments:

Roger Kulp said...

That is disgusting.In the last ten months a lot of my medical problems that had been away for a few years have come back.The worst ones being my seizures and my mito crashes.I have also recently gotten a diagnosis of a very new type of mitochondrial disease unique to autism.I wonder if the reason you do not see pro cure autistics doing the type of activism that Ne'eman or Robinson do,is because most pro cure autistics are too disabled,or their families are too busy being care givers to get involved in this sort of stuff.As a result the least disabled end up speaking for the entire spectrum,which is certainly unfair.

Johnathan have you ever tried to get on the IACC or board of Autism Speaks?

jonathan said...

Roger, no, I have never tried to get on the IACC or on the board of autism speaks. I don't believe the IACC does much good and since you've been a regular blog, you'll probably recall a lot of the gripes I've had about autism speaks, so I don't feel inclined to serve on a board of theirs until they straighten out their act. Even if I wanted the jobs, it's unlikely I could have them for a variety of reasons.

Yes, I agree that pro cure autistics are too disabled and their families are are too busy trying to get services for them, fighting the system that IDEA gives them, promising a relatively normal life for them, so they don't have the time to crusade the way ASAN does. ASAN is mostly comprised of college students (some graduate school) who seem to have time on their hands since they don't have a family to support or kids to take care of, so they have time for activism which helps their cause.

I'm sorry to hear about the return of your medical problems. I hope you get better soon.

Anonymous said...

pls visit www.autismpolicy.org and support efforts to make the CAA reauthorization what we need!
thanks, Heidi Roger

Roger Kulp said...

Studies like this one that's been all over the news
http://www.cbsnews.com/news/study-puts-a-price-tag-on-the-lifetime-cost-of-autism/#postComments

http://www.theguardian.com/society/2014/jun/09/autism-costs-more-cancer-strokes-heart-disease

certainly paint a different picture of autism than the one JER or ASAN want to.I know about al the problems you have had keeping a job.I have never worked.I have been on SSI since I was fifteen years old,and I also get money every month from my 86 year old father.

Jake Crosby said...

At least the name is less inherently dishonest considering what the law actually does and does not do.

jonathan said...

maybe so, it just bothers me that neurodiversity can influence congress like that and what the implications are. Those who feel autism is a disability and not a natural variation of brain wiring are being insulted.

H L Doherty said...

Thank you for this information Jonathan. It does not look good for future progress in addressing the challenges of autism disorders. I wonder how long before the term autism "disorder" is banished from the public discussion of autism. Ne'eman, Robison, Mottron and other autism is beautiful ideologues have done a great disservice to all those who actually suffer from autism disorders.

Shanti said...

The Autism Action Network has an easy link to reject House Resolution HR. 4631 and Senate Bill S. 2449, the reauthorization (refunding) of the former Combating Autism Act. Just click here: http://capwiz.com/a-champ/issues/alert/?alertid=63258251&queueid=[capwiz:queue_id]
This is their description - 'In a truly bizarre move the bill has been renamed the Autism CARES (Collaboration, Accountability , Research, Education and Support) Act. This was done to placate the people who think that there is nothing wrong with autism and that we should not look for the causes, treatments and possible cures for autism.'
There may be enough of a movement to kill this bill if enough of us take action.

jonathan said...

thanks for that info, Shanti, i'll check it out