As parents we belong to a very unique group, the A-club, where only the chosen, crazy, and determined can survive the autism diagnosis. None of us ever wanted to join the autism club, or ever asked to become members. But, because of our kids we were all forced to be in it together. Only another parent understands what it is like to live with this day in and day out. The isolation and loneliness this diagnosis brings can be overwhelming. The hardest part is to continue to get up every day and not give up on our kids. What if everything we read or were told about autism is not necessarily true? What if what we are talking about is not a debilitating psychiatric disorder without any hope for recovery? What if it is a medical condition caused in most part by an immune system that is not working properly? What if autism is treatable? My kid recovered and was kicked out of the A-club because of the medical treatment he received from Dr. Goldberg, a doctor who was ahead of his time. I want all your kids to be kicked out, too.
Ryan was diagnosed when he was four by the leading authority on autism in the Twin Cities. She told us my son would never be okay and would probably end up in a group home or institution. When my son entered kindergarten at almost six years old, he was in the 3rd percentile for speech. By that time Dr. Goldberg had been treating Ryan medically for about a year. Ryan had a full-time aide in his classroom to help him in school. By the third grade, my son tested in the 85th percentile for speech, and by fifth grade Ryan no longer received any services or assistance at school. As a result of the medical treatment from Dr. Goldberg, the only institution Ryan is in today is the university he currently attends on a merit-based academic scholarship. Ryan does all the things the doctors told me he would never do. He studies mechanical engineering and is number two in his class. He joined the Sigma Chi fraternity and is president of the Jewish Student Association. Ryan drives, has a ton of friends, and even has a girlfriend. (Who would have seen that one coming?) But more important, Ryan is happy. If anyone would have told me this was possible when he was little, I never would have believed them. Unbelievable as it seems, this is the same child who wanted to spend his days plugging a portable radio into every outlet in the house over and over again. Ryan is an example of what is possible for children with autism when they receive proper medical and behavioral interventions. They can grow up to lead productive and happy lives.
Ryan’s long road to recovery was the hardest thing I have ever lived through. I remember questioning if my family’s sacrifices and efforts were accomplishing anything. I wasn’t sure if I had the strength to be more stubborn than my son. There were mornings I didn’t want to get out of bed just to face another day filled with autism. The worst times were when I didn’t have a direction or a plan. I was just hanging on by my fingernails. But, at the end of the day, I was faced with a choice: let Ryan drift off forever into his own world, or drag him kicking and screaming into ours. After Dr. Goldberg addressed Ryan’s medical problems, it took years to correct Ryan’s deficits in speech and social skills. Behavioral and educational interventions were needed to help him catch up. Everything he missed while he was autistic had to be taught. The weird behaviors and habits he developed to cope had to be eliminated. It was almost like bringing back a stroke victim.
Those of us who have lived with an autistic child understand the daily struggles associated with our out-of-control kids. We know how putting on a pair of shoes can cause a major confrontation or getting a child into the car can be more than exhausting. The enormous cost associated with the medical, behavioral, and educational treatments for autism is just another obstacle we must overcome. The kind of medical intervention that Dr. Goldberg provides needs to become common knowledge and what every doctor can do for children with autism. When that happens we will learn just how “possible” recovery can be for these seemingly “impossible” children. We must not give up on our children no matter how difficult the road becomes or how hard our children try to make us give up. We have work to do to make the world and the medical communities understand that what our children are facing is not a psychiatric disorder but rather a treatable medical immune problem. My hope is that what happened for Ryan becomes the norm rather than the exception. Something must be done, because there are kids not getting better every day.