My daughter Ava was diagnosed with autism in June 2007, when she was two-and-a-half years old. By the time we received the diagnosis, it was somewhat of a relief. She had no language, and she didn’t point or wave “bye, bye.” Ava was crying for hours and hours throughout the day because she couldn’t tell us what she wanted, what she didn’t want, or if she was hurting. It was awful. She wasn’t interacting with her sisters, and every day she seemed to be slipping further away. When the developmental pediatrician said, “Well, she definitely has autism,” I thought, okay, now we can do something about it.
I had already done some research on autism. I saw articles on everything from diet changes to fad treatments, but the thing that struck me was that autism was a neurobiological disorder and children who received applied behavior analysis (ABA) had documented long-term results. Even as a mother who knew nothing about autism and felt very unprepared for this life-changing-changing event, I knew we had to try to find ABA therapy for Ava in my small town in Georgia. What I didn’t know was that accessing one of the only evidence-based treatments would be the hardest part. Our insurance sent us a letter that autism was an “excluded coverage.” We couldn’t access ABA, speech services, or occupational services because Ava was diagnosed with autism. We couldn’t let this prevent Ava from the opportunity of developing language or at least having a way to communicate and have quality of life. We started paying privately for ABA, and after only a few weeks, Ava was making progress. The behavior analyst taught Ava sign language that helped her communicate her wants and needs, instead of crying. She started developing play skills and the ability to go places with our family without having a meltdown. Ava continued to make progress with 30 hours a week of ABA for the next 2 years, until the ABA team faded Ava’s services out when she was 8 years old.
During the time Ava was in ABA, we decided every child and family deserved the option to have evidence-based treatment such as ABA. Ava and I went to the Georgia State Capitol for 7 years, advocating for insurance reform to mandate coverage of evidence-based autism treatment. In 2015, “Ava’s Law” was passed requiring insurance to cover ABA and other evidence-based treatments for autism. Today, all 50 states mandate coverage of autism treatment in at least some of their state-regulated plans.
ABA taught Ava the skills to be able to attend general education and participate with her peers. She graduated 5th in her class and is now attending the University of Georgia as a Biology major. The most important thing is that Ava can tell us what she wants. She can make her own choices; she has friends; and she can live independently. It is sad that in the United States children with autism and their families must continually advocate for an evidence-based, life-changing treatment. ABA may not be for everyone, but it should be a choice that families don’t have to continually fight to keep.