Dear 2016 Presidential Candidates,
In this last round of presidential debates, the vaccine debate and autism was brought forward. The medical community has addressed the issues for several years. I don’t want to get into some of the misinformation that was referenced tonight, but I want to address an issue that is pressing in the autism arena: adults and autism. As a nation, what are we doing to make this a society more inclusive of adults on the spectrum? We have a crisis at hand. What does the future hold for adults on the autism spectrum? Though others want to debate vaccines, the reality is we have an estimated 50,000 individuals every year becoming adults on the autism spectrum. Many of those adults and their families face bleak futures. Autistic children grow up to be autistic adults.
The need for jobs and job training is huge, and housing options of various types are needed. Many families have aging parents taking care of their adult children 24/7 for three, four, or five decades. I head one of the nation’s only organizations focusing on the issues facing adults on the autism spectrum, and “What will happen to my adult child when I am no longer here?” is a question I hear daily. As high school ends, a nightmare often begins. For many autistic adults, too few resources exist to help them form meaningful lives. Ability levels differ for those on the autism spectrum, and in learning to more easily navigate this world, many individuals need additional support. In several states, the waiting lists for housing may be ten or more years long. Family resources have often been depleted after paying for all of the complicated issues that can be part of autism. Even if a family has been able to scrape together a financial plan, there is little choice of settings and neighbors.
Much clamor has been raised about the vaccine issue, but in reality, there are thousands of adults that need help right now. We need a national conversation to bring together individuals on the spectrum, their families or caregivers, and the federal entities to form solutions and open the doors to innovation. Among the issues needing to be addressed are housing and choice, jobs and job coaching, continued education if appropriate, medical training for doctors in treating typical medical issues in this sensitive population, more training and good compensation for the caregivers and autism professionals, and research on the issues facing these adults. Aging caregivers need our support. Autistic adults have the potential to be productive members of our communities, but we first need to acknowledge that this population exists and then open a door for their potentials to be developed. This can be a win-win situation. Presidential candidates: Adults with autism need a better future, let’s talk.
Madison House Autism Foundation.
Addressing the needs of adults with autism.