A Letter From The President

Another sleepless night with Madison, with his needing me to be next to him to try to soothe his anxieties. Exhaustion would overcome him at 4:00 AM. I was up at 7:00 AM the next morning for a meeting on Capitol Hill followed by a press interview in which I must have looked – and sounded – disheveled. My schedule with Madison isn’t unusual for families dealing with profound autism. Autistics want to know what to expect from day-to-day and we have not been able to tell Madison what is next in his life.

Madison spent a year in what looked to be a promising situation to introduce him to life without high school. Instead of structure and support, he encountered a program that showed a total lack of understanding how to work with autism. It was chaotic, unstructured, and the staff had no idea what Autistics need to be able to succeed. These well-meaning people failed Madison. He went into a deep slump and acted out in manners we had never seen. In his way, he was asking, “What is going to happen to me?” Though I work in the autism field, I have had no answers for him.

The one positive thing I can tell him is that his harrowing experiences give us renewed passion to continue to advance a national conversation that can move us from awareness to acceptance to action for all of the Madisons in this country. THERE ARE THOUSANDS OF FAMILIES trying to get appropriate help for their adult children with autism.

Madison doesn't have the words to describe the frustration he feels now that school has ended. Transition services are less than optimal, he's faced with changes that he cannot accommodate, and he's been separated from people he has grown to trust and who understood him, and this creates a level of anxiety that is painful to watch. Madison and many more Autistics around the country are faced with that exact scenario. Madison cannot tell his story, but we can. Many others have no way of relating their personal journeys because they are exhausted just getting through the day.

We can continue to work for flexible transition programs with supports that help our adult children feel valued and be part of our community. We are identifying, promoting, sharing innovative housing models and empowering small groups across the country to develop local solutions to our collective tragedy. We can make a difference.

Five million adults with autism and other intellectual/developmental disabilities face the prospect of a future of isolation. It is a challenge we must never turn away from --- no matter how many sleepless nights we face. Please support us in our work and share this with other parents of adult children on the autism spectrum.