Why are so many websites saying mean things about Autism Speaks?I think only crazies would say that Autism Speaks is intentionally bad or evil. But there is an unintended consequence of their way of doing things and the way they seem bent on taking over every area of the public autism world.
Autism Speaks moves in and takes over fund raising and public awareness space and shuts out other agencies or groups. They've gone into cities and held an "Autism Walk" in an area that already has one. The spend lots of money advertising it and in so doing shut down the established event. Sometimes even on the same DAY as the established event. It sure SEEMS at times that their motive are less than pure as regards other agencies.
And bear in mind, the agencies they shut out may be providing services to your child. Autism Speaks provides no real "service," only "awareness" and "information." The awareness battle is won, we need to move on to helping families with real world services. It's not just the vaccine people that see no cooperation from AS, it is pretty much all existing groups. It's great that have brochures for families new to the diagnosis but the Autism Society of America already had that. Both nationally and locally the ASA and its parent driven chapters are being pressed as Autism Speaks takes away a share of the fund raising pie and returns very little.
Autism Speaks has purchased and shut down agencies much the same as a corporate takeover. That could be expected by a company run by the former head of NBC. But is that any way to help the field of autism?
This "Adult Town Hall Meeting" (click link to go there)is an example. You won't see Autism Speaks on the website but check out the email address if you have questions. Ask any of the agencies whose lifelong purpose has been to serve adults with autism if they were included in the "brainstorming session" this past spring. If they weren't, then you will hear nothing from them in November. Ask the Autism Society of America, the National Association of Residential Providers for Adults with Autism, any of the Autism Specific Residential Providers (Jay Noland homes in LA, Ruth Sullivan's agency in West Virginia, Autism Treatment Center in Dallas, the list goes on...). They have been doing person centered, state of the art services for ADULTS WITH AUTISM for over 30 years each yet none was even informed about the new group setting out to "create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities." Don't you think if you were creating a group with those goals you'd want to talk to people and groups already engaged in the fight?
That's part of the problem. Autism Speaks acts like no one was out there fighting for services or accomplishing anything before they came along.
And while all that's going on you have the family running the Autism Speaks show infighting and self destructing right in front of your eyes because they can't agree on what's best for their own child!
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