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Congress To ‘Combat’ Autism No More

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Congress is looking to reauthorize a major autism bill before it expires later this year, but the measure will move forward under a new name after lawmakers bowed to concerns from self-advocates. (Shutterstock)

Congress is looking to reauthorize a major autism bill before it expires later this year, but the measure will move forward under a new name after lawmakers bowed to concerns from self-advocates. (Shutterstock)

In a win for self-advocates, lawmakers said this week that they will no longer seek to include the term “combating” in the title of the nation’s primary autism legislation.

A bill to reauthorize hundreds of millions of dollars in federal spending for prevalence tracking, research, early identification efforts and other autism initiatives will move forward under a new name — the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES.

The new name emerged earlier this week in a U.S. Senate proposal to renew the law previously known as the Combating Autism Act. A committee in the U.S. House of Representatives quickly followed suit by attaching the new title to its version of the bill and voting to move the measure on for consideration by the full House.

The change comes as efforts intensify to approve a reauthorization of the autism law. Originally passed in 2006, the measure is set to expire at the end of September unless Congress acts, putting big money on the line.

Currently, the measure ensures $231 million in federal autism funding annually and lawmakers are considering upping that amount as they look to renew the bill this year.

The title of the legislation, however, has exemplified a rift within the autism community for years. Long championed by Autism Speaks, self-advocates argued that including the term “combating” in the name of the federal government’s chief vehicle for supporting autism programs and initiatives sent the wrong message.

“It was a sign that Congress and many of the autism advocacy organizations that argued in favor of that rhetoric within the legislation lacked any respect for the views of autistic adults,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, which peppered lawmakers with thousands of messages in recent months urging a name change. “Autistic people and a growing number of our families do not see ourselves as something to be combated.”

That pressure appears to have won over key lawmakers, with an aide to Sen. Robert Menendez, D-N.J., the bill’s chief Senate sponsor, telling Disability Scoop that updating the name will “more accurately reflect the nature of the programs without alienating the very people the programs serve.”

Meanwhile, officials with Autism Speaks say they will support the renamed bill.

“As one of 36 major national disabilities organizations supporting the current reauthorization effort, Autism Speaks supports the amended legislation, including the new name for the bill. We want the most effective law possible that can address this urgent crisis,” said Stuart Spielman, the group’s senior policy adviser and counsel.

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Comments (11 Responses)

  1. Whitney says:

    Autism Speaks has no real choice. If they object to wording in the title they get less money for their eugenics experiments. This is a defeat for them because it implies people with autism have a say in their treatments which they do not want.

  2. autismmom says:

    I dont care what they call it just as long as our kids and families get the help they need particularly when our kids are older and need housing options. I hope this bill alleviate one of the biggest fears of autism parents that being what will happen to my child when I am gone?

  3. Eric says:

    What? What real world experience do you have with autism? A child or step child or immediate family member who is autistic? Otherwise you are totally clueless.

    Legally people (adults) are entitled to make all decisions they are capable of. I know this because my teenage autistic child is transitioning to adulthood & it’s flat out scary that he can decide things for himself.

  4. fairlady68 says:

    Autism CARES…Much better name and acronym. Loved the great big picture of the US Capitol too…it is one of my former “special interests” :-)

  5. AspieMom says:

    “Autism Speaks” is considering this a win because they helped shoot down an amendment that would have spread the funding in ways that give more support to actual people with autism, and to their families, and, thus, less to the eugenics movement that seems to be the primary goal of “Autism Speaks”.

  6. Donna Titze says:

    This is not good news to me, being the parent of an adult son severely affected by vaccines leaving him with a host of biomedical, sensory and immune issues. His (so called catch all label of) autism is in no way similar to Ari’s autism. His needs are hugely different than a person such as Ari. My son will never be able to function in society the way Ari is able to. I fear that all this change will accomplish will be to redirect focus to where it is needed least and that our more severe children will suffer greatly because of it. No, I do not want Ari Ne’eman, nor anyone from the Autistic Self Advocacy Network, making decisions or providing input on behalf of my son. Ari and others of this group do not, nor will they ever be aware or realize the vast differences in their wants and needs versus the critical medical and intense therapies needed for children/adults such as mine.

  7. Sonja Luchini says:

    That Autism Speaks has so much say in our governmental process proves that money does indeed buy political favor. Rather than have more people on the spectrum within their organization who could advise on appropriate targeting of funds, the one major voice they had, John Elder Robison has left citing their lack of real collaboration or understanding of what people with autism need. One statement in his resignation sums it up; “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

    There are organizations out there without the resources (or voice) to “speak” to government officials. Autism Speaks has utilized huge amounts of money from unsuspecting individuals using local “walks. People think funds raised will stay in the community, not become lobbying fodder for the personal agenda of Autism Speaks founders who refuse to listen to those they claim they represent.

    Until people stop giving this agency legitimacy (giving them money) and start supporting efforts with local Autism Society chapters who will provide services as needed in their community, then we will continue to see this behemoth that is Autism Speaks trample over the real needs of those diagnosed with autism.

  8. Whitney says:

    I think problem is people says this affect their children and they are thinking about their children only. Not how it effects all on the Spectrum. The problem is Autism is lumped together high or low functioning. This means those who have intellectual disabilities are lump together with high intelligence people with autism. Because the statements apply to intellectual disabilities not making their own mind applies to those who can.

    You are too trusting to expect people outside of the family to promote your child well being. I wouldn’t trust family members to be watching out for child’s interest. So who is left to make decisions the state or child. What prevents family abusing person with autism? Nothing. How the state knows that person with autism is being abused? That person with autism speaks up and make his or her own decision. ASAN can look out for children. There is a prejudice from people against high functioning autism because they do not relate on emotional level. Autism Speaks wants to wipe out people with autism no matter what the functioning level is. To Autism Speaks is practicing eugenics by altering the human genome is what comes down to. Autism Speaks would send people with autism to internment camps similar to the Japanese interment camps in the US. Autism Speaks sees your sons and daughters nothing more than abberations and blocked any funding that could provide support services. Combatting Autism meant gene warfare on Tech people and Scientist. Tell me how Autism Speaks has the best interest of your Child’s existence at heart?

  9. Whitney says:

    Autism Speaks has no interest in supplying services to adults with autism, ASAN does. As parents it is easier to be fooled by pretty words of organization who have seemingly best interest of Autistics. I do implore you go beyond the pretty words and look at the actions of Autism Speaks. Autism Speaks has express a strong interest in practicing Eugenics. Autism be honest here occurs at the genetic level and altering human genome will most likely cure it. By definition that is eugenics.

    Besides not allowing high functioning people with autism and even low functioning is saying that they are less than human. There will come a time people with Autism has to make decisions for themselves. I am going be honest with family is just as abusive as a stranger in caretaking situation. I know children who have been abused by their family members by locking them closet and taking the money. Your allowing the children to be taken advantage because you feel that autism does not have the right to make their own decisions. Your overprotectiveness is harming the ones you love the most.

    I am not always for ASAN. I seen them advocating for self determination and rights. If anyone can look out for Autistics it is other autistics. Right the situation where Autistics have absolutely no say in Autism Speaks is very dangerous ones. Autism Speaks would put people with autism in concentration camps if they could which you call institutions.

    Now before you say I don’t understand I have Aspergers so I do have Autism.

  10. Jerry W. Kelley says:

    About the only thing Autism Speaks want out of it is money. They actually do very little for people with autism. Nearly all the money they collect each year goes to pay their board of directors to put on programs to raise more money and to buy politicians.

  11. Dad of a kid with autism says:

    As a parent of a child with autism I have one thing to say; this is a horrible bill.

    $1.7 billion has been spent on zero results. The groups getting the money including Autism Speaks are the only who have benefitted.

    Is your family getting results from this bill? No. There is no coordinated effort, no better school services or work programs, no research yielding new treatments and not one case prevented. If this was a public sector job they would all be fired.

    Do not support this bill. It’s a waste. Read about what it needs to actually help families here

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