The Individuals with Autism Act: Will it Make a Difference?

With the presidential election about nine months away, give or take a few days, politician season is in full force. Presidential candidates are spending more time than usual talking about what they have accomplished and what they want to accomplish trying to convince each one of us that he, or she, is the better person for the job.

Because I have two autistic children and because I tend to frequent parenting groups on line that focus on autism, I have heard a lot of people say that they support Hillary Clinton because she is supported the Combating Autism Act of 2006 and is currently supporting another bill that we are told will give $20,000,000 more to autism research.

That bill is called the Expanding the Promise for Individuals with Autism Act of 2007 (HR 1881). In fact, that bill made some national attention when Hillary Clinton and Wayne Allard met with several advocacy groups to unveil this bill. The press release from March 20, 2007 is available on Hillary Clinton's website .

With all the lip service being paid to another bill, from both politicians and parents of autistic children, that's going to give another $20,000,000 more to autism research I had to look into it. After reading the bill in its entirety, I am wondering how many people have actually read the bill and just not blindly taking the word of politicians that a lot of money is going to go into autism research.

At the current time this bill is nothing but a tool that politicians can use to pay lip service to autism research. I hate to say this, but with 1 in 150 children being diagnosed with autism and Jenny McCarthy jumping on the autism awareness bandwagon with her autistic son, autism has become the vogue cause to support. It's popular right now and those politicians that want to appeal to and gain the support of parents with autistic children as well as autistic adults, they are going to pay it lip service.

Consider for a moment that HR 1881 was officially introduced into the Committee on Energy and Commerce on April 17, 2007, and is not even scheduled for debate nine months later.

The bill addresses many points that those advocating for their children and family members with autism have been screaming about for years; that there has been very limited amount of credible evidence based research into causality, treatment and services, that services are not easily obtainable, that waiting lists for doctors that can diagnose autism as well as waiting lists for services are incredibly long.

For a bill that was put together "To improve support and services for individuals with autism and their families", it addresses issues without really doing anything more than making more money available. It looks like, at least to me, a bill that was put together where Washington could look at the autism committee and say "Look, we are doing something," without actually doing anything.

This bill, should it ever see the light of day, gives a task force one year to research and report on what services are needed and are available and how many people can and need to be served, what education is required for professionals working with autism, what kind of support is in place to help autistic adults become more productive members of society and so forth. This report is to be filed with NIH, the Interagency Autism Committee, and all other relevant committees their findings. The Interagency Autism Committee then has ninety days to respond to all parties about the findings.

The bill also gives 24 months for a demonstration grant program to be set up. This is where the $20,000,000 comes in along with another $5,000,000 specifically for grants targeted at helping adults with autism. The money is going to be doled out in demonstration grants.

So what exactly is a demonstration grant? It's a grant, of limited duration, made to establish or determine the feasibility of a theory or approach.

$20,000,000 over three years, starting in 2009 to prove, or disprove, that the autism community is in desperate need of doctors and therapists familiar with autism as well as services, respite, housing, early intervention, education reform, and so forth. That is what this bill is going to give, if it ever makes it to the congressional floor for discussion and debate.

The Combating Autism Bill gave money for research to find a reason for the autism epidemic. We are no closer to finding that answer than we were in 2006. That bill also made authorizations for activities to increase public awareness of autism and improve health care. Waiting lists are still 6 months to two years long for initial doctors' appointments and services. It also called for information sharing between research facilities and agencies.

The Expanding the Promise for Individuals with Autism Act is doing nothing but throwing money into examining if the Combating Autism Bill is working. Okay, that isn't entirely true. There is one thing that it does do that will help a lot of people who are on the autism spectrum but do not carry a specific diagnosis of autism. It expands the definition of autism to include all autism spectrum disorders (including Aspergers Syndrome and PPD-NOS) as well as related developmental disorders. For many years that has been the red tape that has prevented many children from receiving early intervention and other services.

One thing it does prove is that the autism community has made their voice heard and while not doing much, the government is at least listening. We are part way there. Now if only we can start seeing real results.