| Joe's Story: Recovering from Autism, Against the Odds
Hi — my name is Joe Mohs. In 1986, when I was only 22 months old, I was diagnosed with Pervasive Developmental Disorder, a precursor to autism. My parents were devastated. In those days, autism was believed to be an untreatable, life-long handicap that eventually required institutionalization. Despite that dire prognosis, my mom and dad aggressively searched for solutions. They traveled across the U.S. with me, seeking a treatment that would bring me out of my isolation. I had no speech, play skills, or interest in interacting with other children, except my older sister.
My parents sought a second opinion from a child psychiatrist. He confirmed that I had Infantile Autism and warned them, "Don't get too attached to your son. You will in all likelihood be placing him in an institution before he becomes a teenager."
Mortified, my family stepped up their efforts to find help. We lived in a small, rural Minnesota town, and there were few treatment options available. The most established program for children with autism was in Minneapolis, about 130 miles away, and it used an approach known as sensory integration therapy, which we tried for a period.
We also traveled to San Diego and met Dr. Bernard Rimland, the man who refuted Dr. Bruno Bettelheim's infamous claim that unloving mothers were the cause of autism. Dr. Rimland recommended we see a doctor in Washington, D.C., who was an authority on how diet might affect the development of autistic children. She put me on a special diet that limited my protein intake. We also spent two weeks at the University of North Carolina, undergoing therapy in the TEACCH Program run by Dr. Eric Schopler, an international autism expert.
Despite the fact that I did not fully respond to any of these efforts, my parents never gave up. In 1987, when I was three years old, they found the help I needed — virtually by accident. My dad happened to catch — and tape — a brief report on the CBS Evening News with Dan Rather about a new treatment developed by Dr. Ivar Lovaas at UCLA. Dad’s hopes were raised as he viewed the story that described how 45% of the children in the program had left their autism behind and moved on to lead normal lives.
He quickly arranged an evaluation and test-therapy for me in Los Angeles with Dr. Lovaas' group. Within 10 minutes from the start of the test, I was doing things I had never done before. With cautious optimism, my parents asked if they would consider taking on my case. The specialists said yes, but only if we would move to California and commit to the program for two years. So, my mother, sister, a family friend and I all moved to Los Angeles, and I started the intensive, 8-hour-a-day therapy. My dad stayed in Minnesota to work, but he visited us every few weekends.There is no question in my mind it was this therapy from the Lovaas group — now known as Applied Behavior Analysis or ABA — that allowed me to recover from autism. My family owes the success I have had to Dr. Ivar Lovaas' program and to the sheer luck of my dad having seen that Dan Rather news report that fateful July evening.
My mom and dad never gave up on me. My mom, especially, loved me dearly and became my best therapist. She worked tirelessly, maintaining the consistency of my therapy programs 24-7-365. I only wish she were alive today, to see how my story turned out and realize that all her hard work paid off. She was taken from us by cancer when I was in 9th grade, so she never got to see me graduate from high school, let alone from the University of Minnesota — but I know she would be proud. After graduating from high school as an All-Conference swimmer with a 3.7 grade point average, I received a Bachelor of Fine Arts degree in Graphic Design at the University of Minnesota Duluth and currently have a steady job with many ambitions and goals for a bright future ahead of me.
Applied Behavior Analysis is much more widely available today than when I was little. I wish all parents of autistic children would become aware of its benefits and seek out an evaluation to see if their child might recover as I have.
Finally, I know there are other families with success stories like mine who prefer to protect their privacy. I understand that. But I've decided to come forward and tell my story to anyone who would like to hear it. At first, I was nervous about letting the world know about my "secret." But after realizing that many families today are facing the same challenges that my family and I faced, I had a change of heart. When I was treated for autism, only about 1 out of every 2,000 children were diagnosed with the condition. Today, those numbers have increased dramatically, to 1 out of 150. That is why — in addition to wanting to publicly thank my parents — I have decided to come forward and share my journey, to give families with autistic children a sense of hope and inspiration. |
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