“How I Fought for My Autistic Son”

Written on February 28, 2012 at 9:21 am , by

 

Guest blogger Joanne Corless was featured as our Local Hero from the story “A New Lesson Plan: One Mom’s Fight for Autism Education” in our April issue. Here, she shares her experience raising a son with autism.

I have three children, two girls and one boy. Kiersten is 21 and a nursing student in college. Kylie is 11 and in 6th grade.  My son, AJ, is 22 and has autism.

AJ was diagnosed in the summer of 1991 when he was almost two years old—just a few months after Kiersten was born.  When I received the diagnosis, I came home from the doctor’s office, sat on my kitchen floor and sobbed uncontrollably. All I could think was that my beautiful baby boy would never grow up to have a “normal” life.

I knew so little about autism. My only previous experience with the condition was with a teenage boy with severe autism and leukemia that I cared for as a pediatric nurse at Memorial Sloane Kettering.  My husband and I were devastated and frightened about what AJ’s future would hold.

I hopped from one doctor to the next hoping to get answers and find a way to help AJ. But there was very little support. The incidence of autism in 1991 was low—only 1 in 10,000 children were on the spectrum. There were no early intervention programs in our area that specialized in autism and doctors gave us no hope. I leaned heavily on my faith for comfort and guidance; I asked God to give me strength to find a way to make a better life for AJ.  I knew by the way my son interacted and responded to me that I had a very smart little boy underneath the autism. We were determined to give AJ all we had and promised never to give up on him.

The first few years were difficult. AJ’s autism took over our lives.  AJ presented with classic symptoms: no eye contact, no expressive language, very little receptive language, inappropriate play, no social skills and extremely rigid and challenging behavior. I felt very lonely and isolated.

When he was three, I came across a teaching method called applied behavior analysis or ABA: Trained instructors spend hours one-on-one with an autistic child, deconstructing a task—like tooth-brushing—into tiny steps until he masters it. This therapy changed AJ’s life. In the two decades that followed, I started the AJ Foundation for Children with Autism, which brought ABA programs to local public schools, and opened The Comprehensive Learning Center, a private ABA school.

Today I look back and thank God that we were fortunate to have all the support from our family, friends and a handful of very dedicated, extremely talented behavior specialists. AJ received quality intervention based on ABA for 19 years and he has achieved far beyond our expectations. He still has autism but is a productive member of our community. He has lots of friends, participates in many activities and earns a living by working three jobs.  He has a “normal” life.

Read all our posts about autism here. And share your thoughts on Joanne’s story, or your own experiences raising an autistic child, in the comments below.