Friday, June 3, 2011

ASAN Declares Opposition to Autism Research, Surveillance, Education, Early Detection, and Intervention

The Autistic Self Advocacy Network, otherwise known as ASAN, has announced that they oppose renewing the Combating Autism Act.  For those of you who don't know, the Combating Autism Act (CAA) was passed in 2006 in response to the growing public health crisis of autism.

The purpose of the CAA was to -
  1. Develop disabilities surveillance and research programs.
  2. Create programs for autism education, early detection, and intervention.
  3. Establish the Interagency Autism Coordinating Committee (IACC) to co-ordinate all of the efforts within the Department of Health and Human Services relating to autism.
  4. Create two more Centers of Excellence on Autism.
The act authorized spending roughly 200 hundred million a year in these areas.  If you want a road map to what exactly the results of this act have been, you should look at the information provided on the IACC's web site.

While there is always room for improvement, the Combating Autism Act has been beneficial for people with autism and their families.  It has brought much needed attention and funding to deal with the ever increasing problem that is autism.

However, the CAA is reaching the end of its initial five year life span and needs to reauthorized by Congress for the programs it funds to continue.  The renewal of the act is currently before Congress and, perhaps surprisingly for some, ASAN has declared that they are against it being renewed. Their position, in the words of ASAN president Ari Ne'eman, is  -
While we respect the good intentions of the co-sponsors and value their interest in autism legislation, passing a 3-year extension of the current unacceptable status quo would do real harm to Autistic people and our families.  This legislation would keep in place a status quo without services, without consideration of the needs of adults and without inclusion of self-advocates. We urge Members of Congress to oppose any long term extension without needed program reforms.
In what amounts to a big F you to the majority of people on the autism spectrum and their families, ASAN is whining that because they don't get enough of the benefits from the CAA that no one should benefit.

Yet they are clearly missing the point that the CAA was not meant to fund adult services.  The purpose of the CAA was to do much needed basic research and to help set up screening, diagnosis, and intervention programs.  It was never about providing funding for adult services nor was it about having "self-advocates" dictate the direction of autism research.  I think it is better to leave those decisions to those actually qualified to make them - i.e. scientists and researchers.

Although when it comes down to it, the idea that "self-advocates" are excluded from the process is absurd on its face.  Two out of the 11 public members of the IACC are "self-advocates" including Ari Ne'man, the head of ASAN.  They have almost the same representation on the committee that parents whose children have autism do.

No, their entire point basically boils down to the fact that because they don't control the agenda and that they don't get enough of the money that the whole thing should be scrapped.  As they did with the wandering issue, ASAN has taken an ideological stance that is completely at odds with the needs of the majority of people who have autism.

What ASAN should be doing is advocating for additional funding for adult services, not trying to sabotage the funding for research and programs that will benefit everyone with autism.


  1. Generally a thumbs up except for:

    I think it is better to leave those decisions to those actually qualified to make them - i.e. scientists and researchers.

    Giving scientists free reign is like give an alcoholic a drum of ethanol.

  2. It would be really nice if Are Ne'eman Incorporated board members would confine themselves to advocating on their own behalf and stop interfering in the rights of families to seek treatment and cure for their children's disorders.

  3. Actually the IACC has public members so scientists and researchers don't make all the decisions. Morton Gernsbacher is a scientist and researcher who opposes curing autism and gets federal funding from the CDC even though she does not believe autism is disease. I don't want her making decisions and the CAA is a joke as long as she gets funding at taxpayer expense.

    I thought the purpose of the CAA was to find a cure and to prevent autism, yet both of the public members of the IACC with autism are opposed to a cure. These individuals are barely affected by their autism if at all. To date, not one pro-cure autistic has been appointed to the IACC.

    It is interesting that Ne'eman would be opposed to the combating autism act, when he is one of the main beneficiaries as he serves on the IACC and can promote his agenda at taxpayer expense, money authorized by a law he opposes.

  4. Thee purpose of the CAA and the IACC are just red herrings to waste time. Ne'eman serves the purpose of the jaackasses who wrote this bill as he distracts from what the real problems are. We already know how to cure autism and how to prevent it from happening. All that's needed is to tell the truth about how mercury causes the brain damage. It's as simple as that. All of this disingenuous argument is propaganda. Don't let yourselves become a part of it.

  5. OK, maybe I should have said that bit about scientists and researchers differently.

    Leaving all research decisions solely in the hands of scientists and researchers wouldn't be the best of ideas. But it would still be better than having groups like ASAN responsible for setting the direction.

    It is a good thing that the public members of the IACC do have some say in setting the direction of research.