What if your child went through life without being able to say he or she loved you? What if that child possessed immeasurable talents and love for others, but simply couldn’t control the sensory processing in the brain to articulate those gifts? What if he were in danger and hadn’t developed the social skills to accept the help of a good Samaritan? What if she were your child?
Before this year, I never would have been able to ask those questions because they had never crossed my mind. But when my son Josh was diagnosed with autism, the stark reality of this terrible condition changed my life forever.
As a scientist, I began reading the well-established medical literature that has characterized Applied Behavior Analysis (ABA), the gold standard of autism treatment, as evidence-based treatment for autism.
I began to see what the parents of other children with autism see, a future of independence and sustainability if such treatment is provided early in life. I also began to understand the desperation felt by those parents who see the potential benefit of such therapy, but lack the resources to obtain it for their children.
I liken the feeling to having your child slip from your fingertips when you would be willing to do anything to hold her closer for just a few moments longer. Through this learning process, I began to feel the love and compassion that comes from raising a special-needs child, but also the outrage that parents of children with autism have developed in this state.
The science doesn’t need an explanation. We need look no further than the federal government, military and respected companies such as Microsoft and the Mayo Clinic for examples of organizations embracing what has become obvious in medical science; that ABA works for a large percentage of children with autism.
The economic benefits to society are no less obvious when we consider the benefit of having self-reliant adults versus more government dependents.
However, none of these facts have been able to convince the Utah Legislature the time has come to mandate a certain level of ABA insurance benefits for children with autism. Given a lack of determination by the federal government to mandate similar reforms to federally regulated self-funded health plans, the future of these special children remains in peril.
In the last legislative session, Senate Bill 55, sponsored by Sen. Brian Shiozawa of Cottonwood Heights, passed the Senate and was sent to the House of Representatives for consideration. The bill was never advanced past the House Rules Committee (the body that determines which legislation will be considered for adoption).
This lack of action effectively ended the hope this legislative season would be different for parents and children affected by autism.
I’ve never met the members of the House Rules Committee, but I hope they get to meet Josh one day. He’s a beautiful and intelligent young boy who just wants to say, "I love you."
Justin B. Dickerson, PhD, MBA, is a biostatistician who lives in Murray.
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