I sat waiting for the press conference to start, knowing that new figures for rates of autism were about to be announced. The room seemed incredibly tense as parents, educators, researchers, reporters, legislators and government officials waited for the bomb to drop and drop it did.
The startling numbers: One in 88 children nationally has autism, up from one in 150 between 2002 and 2008. But more shocking still is that Utah has the highest autism rates in the country, with one1 in 47 children qualifying for the diagnosis. This means my daughter is that 1 among 47.
The rise in autism rates announced March 29 cast me into a sea of emotions. I was immediately transported back to the time Skylynn was diagnosed. I remember the grief, confusion, and unfounded yet crushing guilt. I spent days months crying. Understanding that 1 in 47 children in Utah has autism means that 1 in 47 children's parents will experience these painful moments.
The absolute worst experience along my autism journey was the day I received a bill from my health insurance company saying it wouldn't cover my daughter's well-child visit because the doctor used "299: Autistic Disorder" as a billing code. When I asked the insurer about its refusal, I was told, nearly verbatim: "I'm sorry there are no effective treatments for autism. So we won't cover a diagnosis that there is no help for."
I cannot express the tailspin that put me into. I called the insurer twice more to see if I had somehow heard it wrong. My husband called to see if he would receive a different answer. Each time we were told the same thing.
I felt defeated. My daughter was lost. My insurance company that I had naively trusted to care about my family's well-being told me there was no hope for my child. It's the modern-day equivalent of "You might as well put your child in a mental hospital; there is nothing you can do."
I cried for days. I still cry over the insurance denials.
My daughter is lucky I am a fighter. I picked myself up, did some research, and discovered that autism is treatable. In fact, kids with autism who receive intense therapy have an 80-90 percent success rate for making major life improvements.
Therapy can make the difference between a nonverbal adult living on state assistance and a verbal, functioning adult who has a job and pays taxes. The stark difference between the therapeutic reality and the obfuscation of insurers is astounding, and it is real.
The new statistics hurt. They foretell that hundreds of parents will soon be stuck in the same awful position I occupy, knowing that there is help available, yet out of reach. With autism rates so high in Utah, insurance companies must choose to cover diagnosis and treatment, or the Legislature must require them to do so.
Skylynn is amazing. Each 1 in 47 children with an autism spectrum disorder is amazing. Now it is time for Utah to make autism insurance available so that everyone can see how even more amazing these kids can be.
Christine Passey is a mother, social worker, political advocate, blogger at www.autism-island.com, and a vice president of the Utah Autism Coalition.