POLICY: The Proper ASD Policy Begins with Listening to Parents, By John Whitmer

Eric_and_johnOn November 24, 2007 Senator Clinton announced her "Plan to Help Children and Families Affected by
." While the Senator should be commended for finally paying attention to the
issue in her presidential campaign and while other candidates should take note, her plan isn’t really a plan at all.

The "plan" calls for spending 700 million dollars to primarily fund research "to identify
causes of autism and monitoring its impact across the country. The Combating Autism Act of 2006, which Clinton co-sponsored, appropriates 500 of that 700 million. Therefore, the plan really only calls for an additional 200 million. Meanwhile, not one penny of that original 500 million has been spent.  Perhaps the Senator needs
to look first into seeing that her original policy gets implemented.
In fact, Senator Clinton should lead the charge in Congress to fully fund the Individuals with Disabilities Education Act(IDEA); this would go a long way in solving the issue of "encroachment" that
school districts across the nation are facing.

The next proposal was to create an "Autism Task Force."  The plan does not say whether
this task force is to be private or federal.  Will the task force recommend legislation and appropriations?  Will the task force oversee implementation of these initiatives?  Many states, like California and New Hampshire to name just two, have already established such a task force.  Why couldn’t the campaign have consulted these good works and compiled their finding and recommendations to produce the evidence-based recommendations for treatments, interventions, and services that Clintons task force would propose?  Wouldn’t this save precious time?  Will the Autism Task Force work in conjunction with these state task forces or override them?
The plan calls for the creation of a National Technical Assistance Center; but does not detail
what such an organization would do. Would it create more regional centers and family resource centers? Will it coordinate services among these organizations? Or will it replace these organizations?
The plan also guarantees quality, affordable health care. This is much needed as most insurance
policies do not cover expenses related to Autism Spectrum Disorders (ASD).  But will this policy include those with Asperger Syndrome and Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS); The language of the plan suggested that it won’t since it used the term autism instead of ASD.
In addition, the Clinton plan calls for grants for adult services, improved access to care and teacher training.
What about training for physicians, community members, and first responders?

Dan Freifeld of the Clinton campaign said that the staff consulted "many experts" in developing
the plan.  The question that came immediately to my mind is "what experts?" There are many experts in research that want more funding but for parents research isn’t the only solution. In fact, many
parents and adults living with ASD believe that it doesn’t need to be cured; rather, ASD needs to be understood and accepted. People with ASD need to be included within their communities.

The YouTube
contributor, christschool, for example, brought this point home in a creative response to the Senator’s announcement of the Combating Autism Act. As christschool explained, those in political office
often have very limited exposure to ‘normal folk.’ Hillary just needs to be introduced to autism outside of the framework of Autism Speaks and the various other charities that pretend to support autistic

The point
is that research doesn’t help those families that are living with ASD
now.  There are also many experts in education who have the fiscal
incentive to deny needed services to children with ASD because those
services are too expensive. There are many experts in state services
who deny benefits to those with diagnoses of Aspergers and PDD-NOS. These experts are not always on the side of families; many times these
they have different agendas. This is not to say that the statements
of support from the Autism Society of American and Autism Speaks, with
whom Senator Clinton collaborated with for the Combating Autism Act,
are not experts nor were well-intending. It is to say that they
are not the only experts.  The true experts who know their children
the best are, of course, parents.

In the Senator’s announcement there
is only one mention of parents: "Without this base of research,
parents may not know what services and supports for autism are most
helpful for their family members impacted by autism."  This statement
suggested that parents don’t already know what is best for their children. They do. Ask them.

The Senator’s policy is throwing
money at the problem.  Sure the 200 million in addition to the 500 million
already promised but still not delivered would help.  What would help
more is for Senator Clinton and other presidential candidates to stop
talking at parents and to start listening to them.

As a parent of a child with ASD,
I am hoping for such a start.

John Whitmer

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3 replies »

  1. One more reason why I don’t trust Hillary. The scary part is if elected she’ll have to prove how tough she is as a women and a Democrat, the necessary ingredients for another war which will suck more money away from necessary healthcare needs.

  2. I agree. Senator Clinton should put a little elbow grease into her own policies instead of just paying problems such as ASD lip service and throwing money at them. She needs to not just focus on the cure, but improving the quality of life for those affected. However, this is a problem not limited to just Senator Clinton and ASD.
    Like you said, stop talking at people, and to start listening to them. After all, senators and those in office are supposed to be the voice of the people.