On the surface, my 20-year-old son looks like a typical young adult, so most folks hear his loud voice and see his strange behavior and conclude that he is “weird.”
There is no way for them to know that Matthew has a high functioning autism spectrum disorder (ASD). His disability is invisible, and yet incredibly visible.
This “invisible disability” was not diagnosed until he was 11 years old, despite behaviors and characteristics that were a perfect match to Asperger’s syndrome.
Without an accurate diagnosis, Matthew was labeled as a problem child who needed to be “fixed” by various well-meaning teachers, school administrators, and family members.
I had thought that when we made it through the difficult journey that is the public education system that we were going to be on the downhill slide. Instead, I am engaged in a protracted battle for adult services with multiple public agencies.
Ironically he is not “disabled” enough to gain necessary services from the local board of development disabilities, and yet requires more intensive services than he was being provided through the Ohio Bureau of Vocational Rehabilitation Services.
I have been snagged in a bureaucratic spider web in which information is given seemingly begrudgingly in bits and pieces. It feels as though I am putting together a very complicated puzzle with my eyes closed, with only a few pieces given to me at a time.
Fortunately, we have discovered a private company, Out of the Box Behavioral Solutions, which has been able to provide exactly what he needs to progress. Unfortunately, we have to pay for these services out of our own pocket—and they are not inexpensive.
As my son says, “If you know one person with an autism spectrum disorder, you know one person with an autism spectrum disorder.” His statement echoes the fact that the range of abilities of folks with ASD varies greatly, which speaks to the tremendous need for individualized services.
I am very aware that there are many other families who may not have the financial resources that we do. We will in fact deplete our resources fairly quickly.
Reductions in funding for early intervention services, a confusing array of services differing from county to county (and in many counties are not available at all), and an adult system that is not fully prepared to successfully transition ASD individuals to adulthood create difficult paths for these individuals.
Five months ago Matthew was struggling to attend his work program (missing 3-4 days out of a 5 day week), functioning poorly when he was there, and having meltdowns that involved banging his head against the wall in frustration, anxiety and sadness.
With the one-on-one job and behavior coaching, he is now attending a program with a “life” coach 5 days a week, 3 hours a day, and is a much a more confident and happy young adult. (He even does his own laundry!)
He is proof that when provided with services that meet his needs, he can become a productive member of society.
My heart hurts for those families still searching for answers, and I can only hope that for those young children just being diagnosed with ASD, the picture will be very different when they arrive in early adulthood.
April is Autism Awareness Month.