Susan Wilczynski is executive director of the National Autism Center. James T. Brett is president and CEO of the New England Council and current chairman of the Governor’s Commission on Developmental Disabilities.
As the number of individuals diagnosed with autism spectrum disorder (ASD) continues to increase, a national debate rages over who should pay for treatment services for this population. With this backdrop, it is easy to overlook a fundamental reality. Treatment — although essential — is only one part of the equation. We must more effectively build communities that welcome the full participation of individuals on the autism spectrum.
Inclusion not only creates critical opportunities for these individuals, but also strengthens the fabric of our society in multiple ways. The inverse is equally true. Ignoring or marginalizing these children and adults and their families negatively affects our communities, leaving lost opportunities.
Given the rising prevalence of autism, it will eventually touch all of us, directly or indirectly. As a society, we need to better understand the challenges facing our friends, families, co-workers and neighbors affected by this complex disability.
Even with treatment, most of the one in 91 children diagnosed with autism today will grow up to be adults with autism. With appropriate treatment, many of them will make significant improvements. Many will learn in the same ways that we do. Their independence benefits all of us.
In spite of what are often significant and ongoing gains, however, these individuals are often at a disadvantage.
Individuals with autism and their families are often ostracized within our communities. How many times have we shaken our heads and evaluated someone’s parenting when their child is having a meltdown at the grocery store? How often have we looked on with disdain at a local restaurant because a child insists on walking back and forth between tables repeatedly? These parents are often exhausted, frustrated, undersupported and misunderstood. Each of us has the ability to lighten their burden.
Most individuals with autism are employable when they come of age. But very few are employed. Some are unemployed because no one has considered what existing jobs could appropriately be filled by an individual on the autism spectrum. Others who may have strong technical skills are unemployed because their social skills are limited. Even if they are hired, they may not receive accommodations to support their position. The opportunity to take a two-minute break when confronted with a challenging situation, for example, may be all that stands in the way of an individual with ASD being employed.
We must try to identify more opportunities to encourage and support participation by individuals on the autism spectrum. Our attitudes should not be among the myriad challenges they face.