Two Important Autism Bills Signed Into Law


Two important pieces of autism legislation have recently been signed into law. On September 30, President Obama signed H.R. 2005, “The Combating Autism Reauthorization Act.” He thereby ensured that crucial programs for autism early detection, surveillance, research, education, awareness and treatment will receive funding for three more years, through September 30, 2014. These programs had been authorized under the Combating Autism Act of 2006 (CAA) but could have been discontinued without the passing of H.R. 2005. With the Centers for Disease Control and Prevention estimating that 1 in 110 children — 1 in 94 children in New Jersey where I live — have an autism spectrum disorder, the reauthorization of the CAA means that research into the treatments and causes of autism can continue.

The other major piece of autism legislation that just became law is SB 946, which mandates that health insurance health plans in California must cover behavioral therapy as a medical benefit for autistic individuals. 27 other states (including New Jersey) already have such a law. While insurers have predicted that the bill will add $200 million to the annual cost of health insurance, advocates counter that it will increase premiums by less than 1%. The bill was authored by Senate President Pro Tem Darrell Steinberg, a Democrat, and takes effect July 1, 2012 and expires July 1, 2014, when the federal government will issue a list of essential benefits under federal health care reform. If behavioral therapy for autistic individuals is not on the list, SB 946′s mandate will expire.

Insurers have fought coverage for behavior therapy for autistic individuals on the grounds that it is an educational, not a medical, benefit. My 14-year-old son Charlie, who is on the moderate to severe end of the autism spectrum, was just over two years old when he started doing such behavior therapy, Applied Behavior Analysis (ABA). ABA for such a young child often involves one-on-one teaching. Therapists use teaching techniques based on B.F. Skinner’s principles of behaviorism to teach children, often by “breaking down” tasks and activities into smaller steps and reinforcing a child positively for successfully completing each step and then gradually teaching children to build on what they have learned and perform more complicated tasks: learning to pronounce a word, playing with Legos, dressing themselves, writing the letters of the alphabet, having a dentist clean one’s teeth. ABA is often incorporated into teaching autistic children in school settings and can be used to teach older children how to, for instance, perform tasks for a job on their own.

Charlie did hours of ABA therapy at home from the time he was a toddler till he was about 11 years old. He started with 40 hours/week of therapy and then was doing about 6-8 hours at the time home therapy ceased. From the time he was 4 1/2, he has been in mostly public full-day special education programs here in New Jersey, all of which incorporated ABA teaching. In a few cases, school districts paid for some of Charlie’s in-home ABA therapy. We paid for the bulk of all those years of one-on-one therapy. Our families were generous, but we still drained our savings, including most of my earnings from my first job teaching that, we had thought, we would use to buy a house. It’s just now, with Charlie a teenager, that we have found ourselves in more stable economic circumstances.

In signing SB 946, Governor Jerry Brown “signaled reluctance.” As he said in a signing statement:

“While this bill provides relief for families of autistic children and some clarity for health plans, insurers and providers, there are remaining questions about effectiveness, duration, and the cost of the covered treatment that must be sorted out.”

Advocates for ABA often say that, for some, intensive ABA therapy given to a young child can lead to that child losing their autism diagnosis and/or no longer needing special education services. This has not been the case at all for Charlie. He has had years of ABA, both at home and in school (including at a very highly touted public school autism program in New Jersey). He will need support all of his life, including staff to help him work (provided he can be employed) and live. He can talk a little and has significant cognitive and behavioral challenges; some of the latter require something beyond ABA therapy. But ABA has certainly played a profound role in Charlie’s health in a derivative way, in terms of his quality of life: Charlie lives at home with us, his parents, rather than in an institution. The teaching techniques of ABA have taught him to do many things, from talking, to taking medication, to learning how to calm down when he is in a state of severe anxiety, to riding his bike.

Congressman Mike Doyle of Pennsylvania was one of the sponsors of The Combating Autism Reauthorization Act and is now seeking to enact H.R. 2007, “The Autism Spectrum Disorders Services Act,” legislation to provide more services for autistic individuals, especially adults. This bill “would also establish a planning and demonstration grant program for services to children, transitioning youth, adults, and individuals of any age who may be at risk of injury, authorize grants for protection and advocacy systems, and create a national training initiative to better equip teachers and autism services providers.”

As the parent of an autistic son who is fast entering adulthood, “The Autism Spectrum Disorders Services Act” is very much needed. Autism is a lifelong disability and many autistic individuals will, like Charlie, more than benefit from services that can assist in the difficult transition after school ends, provide for their safety and advocacy and better train staff to support them. While cheering the passage of The Combating Autism Reauthorization Act and California’s legislation, we need to think seriously about the future needs of the 1.5 million Americans on the autism spectrum, to ensure they have the best possible quality of life we can provide.


Photo of the author's son riding a bike, one of the many skills he learned thanks to ABA (and a lot of encouragement from his dad) by the author

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Rajesh M.
Rajesh M.3 years ago

I appreciated this blog! Keep up the good work, I like your writing. I have gotten some good information here.

criss S.
criss s.4 years ago

Thank you.

Carole Cherne
Carole Cherne4 years ago

I am grateful for these laws, which came too late to benefit my own now adult children. It's about time.

Victoria M.
Past Member 4 years ago


Michelle DeDeo
Michelle D.4 years ago

About 50% of the males and 25% of the females in my family have Aspergers on my mother's side. Both myself and my son have it. Unfortunately, because people with Aspergers are usually very intelligent and "look" and "talk" normal (usually the physical manifestations are not noticeable unless you are looking for them), there is a lack of providers understanding and treating Aspies. Thus this bill will probably not affect us in any way.

As to the number of children being diagnosed with ASD (Autism Spectrum Disorder which includes Aspergers), the diagnosis of these disorders are fairly new (within the past few decades). Aspergers wasn't even a recognized condition until 1991. In the past, many people with ASDs were labeled with anxiety disorders, OCD, recluses, and even labeled with disorders of exclusion (i.e. the diagnosis actually meant "not describable by another other condition"). Through the evolution of the internet and greater publicity of these disorders, they are finally being accurately diagnosed and treated. This needs to be taken into account when taking about an "epidemic."

Also, there is a connection between the brain and the gastrointestinal tract. The stomach has sometimes even been called "the second brain." The anxiety that people with ASDs experience triggers many stomach and intestinal disorders. Add our Western diet to that and you can see why it has become such an issue.

For those who don't have the time to spend creating gluten-free, dairy-free,

Jenny S.
J Stergiou4 years ago

Great news! All the best for your son's future, dear! :)

Debbie M.
Debbie false4 years ago

Great information! Thanks !!

Dawn G.
Dawn Harvey4 years ago

Autism needs to be greatly supported and we need to find out why it is so common for a child to have autism now. It is not normal.

Linda T.
Linda T.4 years ago

Wonderful news for families.

vicki h.
vicki h.4 years ago

Did you notice---more vaccines more autism, ADD, ADHD, more neurological problems? Big pharma gets richer. Children get the shaft, parents are left to deal with and pay for treatment and more centers for treatment are established. My constitution says nothing about the government (schools included) being able to put a foreign substance into my body. Save the children. Build the immune system, don't destroy it with vaccines. My step-grandson died 3 days after a vaccine (Ryan was 3 months old). I have M S the week of a vaccine. Dear 22 year old friend got Lupus the week of her vaccine. Friends with cancers, unexplained fevers that kill, all from vaccines. Research anti vaccine sites for ingredients in vaccines and you will never agree to a poisoned needle again. Same applies to your pets. Another big sham.