the autism speaks senators speak out against autism

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http://www.autismspeaks.org/advocacy/advocacy-news/us-senators-respond-cdc-announcement

I was just looking at the autism speaks website and after that one in 68 study came from the CDC some senators made their obligatory PR statements statements. Here are some tidbits from someone more interesting ones:

She wants to increase education surrounding autism and she still calling it a disease, just wow. By the way she is a member of the Congressional autism Caucus.



I wonder if he could actually name one organization other than autism speaks.


Thank you, Sen. Rubio. How about us young and older adults with autism? Is a tax-free savings account helping us when we face a 70% unemployment rate as a group?



Thanks, Sen. Burr, now how about us adults who have autism?



Yeah, I've been calling around for the last few years to local, county, state, and federal agencies asking them what services I can get on as an adult with autism. Collectively their answers amount to Jack s**t. I wish someone would tell me where these critical programs are.



As I mentioned, these are US Sen. responses from the autism speaks website. I may be missing something, but it seems to me like none of them address adult issues. Now granted, tax-free savings accounts will be some amount of help to parents, but let's be realistic when you're low income or middle-class American and your dumping money into the treatment of your autistic kid how much money are you going to be able to set aside in your tax-free account? Seems to me that this would be more useful as a tax shelter for their rich friends. Wouldn't it seem more useful to offer parents and adults vouchers for therapy? Also, wouldn't it make more sense to give adult access to therapy rather than giving them a tax break that a clear majority can't use? I don't know, maybe I'm a cynic, but it's things like this that make me realize how autism speaks, gets all these wealthy donors. Having senators in your pocket speaks pretty loudly. Unfortunately, it speaks about money, not autism.

Last edited by Rascal77s on 31 Mar 2014, 9:06 pm, edited 1 time in total.

None of them have it. Autism speaks is a non profit, donation money sespool, targeting parents with autistic children.

It should be called "neurotypicals speak autism"

Yes, because people with autism are worthless until they spend enough time in therapy to pass for NT, at which point they suddenly start having potential [sarcasm]. It's a good thing SharkAttack's post about Autism Speaks was a joke.

The ABLE act that Marco Rubio references is actually a really good thing for disabled adults. It would increase allowable savings up to $100,000 without risking benefits eligibility. That is huge for adults.

I mean, I don't care much for Rubio at all, but I do want to see ABLE go into effect.

Like I mentioned in my post. It would be a good thing for some but realistically, how many people on the spectrum can actually save money? Especially $100,000. I sure as hell can't. We all know that autism affects people and families in all income brackets. Does this plan benefit lower and middle class people as much as it benefits rich people? As things stand right now in this country most adults can't even afford to get a diagnosis, let alone therapy. Why start with tax benefits rather than access to basic needs such as housing, meaningful assistance with college, access to therapy to help us deal with issues like depression and PTSD that are so common for us, how about making autism a fast-track criteria for disability benefits? It just seems really backwards to me to start with tax benefits.

But you're right Verdandi, something is better than nothing. I just think of all the posts that I've seen since I joined WP about people agonizing over not being able to afford a diagnosis and not having access to basic services and it hurts me to see that this is the best they can come up with. And that Sen. calling autism a disease really stung too.

I'm not diseased. I'm wonderfully unique. Autism is not a fricking disease and it's not the end of the world, either. Neurotypicals Speaking for Autism should be their new name. I can't believe that Autism Hate Month is only four hours away.

I totally agree I get sick of them calling Autism a disease, also I'm not suffering I can do things for myself like shopping and doing my garden and housework.
They should be looking for a cure for life threating things like motor neurone or Huntingtons disease.

Who cares about the $100,000 or the tax benefits? The point is the ability to have more than $2000. Upper and middle class types won't benefit as much as lower class and poor disabled people because having more than $2000 in your savings won't disqualify you from SSI. This isn't just about autism either, but about disability in general. If anyone in the upper and middle class actually needs disability benefits, they'll likely be eligible for SSDI, which does not have such a limit.

I know someone who was denied SSI because she briefly had more than $2000 in savings. The ABLE act means that wouldn't happen. It removes at least part of the mandatory poverty requirement from SSI.

Here's some description of what it is:

http://www.ndss.org/Advocacy/Legislativ ... -ABLE-Act/



Oh yeah, the whole thing is weak and pointless. They're not doing much more than grandstanding for people who lack investment in this struggle. I wasn't trying to argue with your overall point, but the ABLE act is an actual improvement.

There's a Congressional Autism Caucus?

Yeah, it's a major issue and it looks good on election day.

The stupid thing is, with all this money poured into autism research, there still isn't that much practical stuff focused on education, communication, employment... you know, things that will help real everyday autistic people have better lives. Or at least theoretical research that figures out how we learn and develop. But no... It's so much cause-and-cure, as though disabled people should have no goal in life but to sit around being pitiful until they either got cured or got dead. So they poke through our brains and pick at our DNA and say they're helping us, but here we are with unsuitable educations, unemployed, poor, and stigmatized, and they still think they're being oh-so-charitable for doing research that doesn't help a single living person, anywhere, ever.

That does sound good. I worry that if I have too much money, especially from rare band photography shoots, that I'd be taken off the disability support pension.

I'm probabaly not the first to suggest this......

Let's start an organization called "Neurotypicals Speak!" Our managment will only have autistic people on it. We will work hard to find a cure for being born neurotypical - do you think we can get funding? Lots of funding?

What a lot of people don't understand is that "autism speaks" should really be called "parents of autistic children speaks". Because the organization represents the fears and the interest of parents more than that of the autistic children themselves, let alone adults. It's the parents who have this so called "delusional" or "society defined" idea of what the perfect child should be. Autistim speaks is nothing more than an organization that's trying to fulfill the wishes of parents who want their children to be perfect which is nothing more than a delusional fantasy.

OASN: It would be nice if there was an autism organization that spoke for the interests of people who actually have autism rather than treating us like we're defects. Hopefully someday that will happen.

In the US in the 80s, a disability activist wrote a book and then, IIRC, burned the manuscript to make a point about how earnings are handled for people on SSDI and SSI. After some work, those guidelines were changed to not entirely prohibit income, although SSDI has a better deal than SSI in that regard.

Should it not rather be called "Neurotypicals Go Quiet!"?

There are huge opportunities for selling sleeping pills and other medications that reliably alleviate symptoms, and appropriate assistive technology, such as sound-proof helmets that enable NTs to pass as Autistics.

They should really be called Ableism Rants Hysterically