We Cannot Turn A Deaf Ear To Those With Autism As originally appearing in The Patriot Ledger
Susan Wilczynski is executive director of the National Autism Center. James T. Brett is president and CEO of the New England Council and chairman of the Governor’s Commission on Developmental Disabilities.
As the number of individuals diagnosed with Autism Spectrum Disorder 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 hurts our communities.
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 being 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 to talk, play with their peers, take care of themselves, and 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. These families face judgmental eyes as they try to accomplish what, for most of us, are routine, everyday tasks. 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, under-supported, and misunderstood. Each of us has the ability to lighten their burden.
Children with ASD are sometimes denied access to opportunities that their typically developing peers take for granted. For example, recreational programs often make no accommodations for the kinds of special needs that are common in children on the autism spectrum. As a result, they get fewer chances to develop skills that would help them connect with other children. They also get fewer chances to experience the joy that is often associated with these kinds of activities. Access to these opportunities impacts the development of these young people as they transition to adulthood.
Most individuals with autism are employable – and able to join us as taxpayers – 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.
On a recent evening in Boston, the Ford Hall Forum tackled the issue of autism. A panel of experts provided relevant and timely information; but it was the audience that made the program memorable. Several adults on the autism spectrum joined us that evening. They asked questions and shared their insights both during and after the presentation. It was a night that welcomed their participation. The evening was a powerful wake-up call, but it was just one night.
In each of our communities – at the grocery store or local restaurant, at the recreational center, at our places of work or worship – we must try to identify more opportunities to encourage and support participation by individuals on the autism spectrum. Our attitudes or lack of understanding should not be among the myriad challenges they face.
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