Meeting the needs of adults with autism

Jenny Decker RN's picture

In 2008 the Centers for Disease Control announced that autism occurs 1 in 150 children. Families with children with a diagnosis of autism or one of the disorders under the autism umbrella often have very difficult lives. Caring for a child with higher functioning autism can be just as frustrating as they may look like the neurotypical child, but they still have many of the same challenges as children who are lower functioning such as social awkwardness, difficulty understanding language, gestures, and social cues, as well as learning disabilities that can prevent them from being able to function in society on their own without support. With the children growing up, a new problem becomes apparent. That problem is meeting the needs of adults with autism in the community.

On Friday November 15th, a consortium met to discuss the needs of this upcoming autism tsunami called Advancing Futures for Adults with Autism. This consortium was sponsored by the AFAA (Advancing Futures for Adults with Autism) and Autism Speaks. Daniel Stone of Autism Speaks led the event based on three major areas of concern: housing, employment and community life for adults with autism.


The central location of this meeting was in Chicago. Fifteen other locations and a virtual site were also involved. Over 1000 people participated. Those who participated in this historic event were caregivers, advocates, elected officials, family members, and adults with autism. The meeting was meant to discuss opinions on what the needs for services were on each end of the spectrum in the areas of housing, employment, quality of life, and community integration. This is an important event because many of those people with higher functioning autism often find that funding for services is much more challenging to obtain than those who are lower functioning.

Autism is a disorder that affects speech, social skills, and learning abilities. Some of the characteristics of autism include intense or odd interests, repetitive behaviors, hand flapping, inappropriate laughter, difficulty managing transitions, intense concentration or focus on certain preferred activities, and specific abilities or interests in music, math, technology, or artistic capabilities.

The consortium consists of the following: Autism Speaks, Alpine Learning Group, the Autism Program Service Network, the Daniel Jordan Fiddle Foundation, Easter Seals, Global Communities of Support, Hallmark Community Solutions, New York Center for Autism, Organization for Autism Research, the Southwest Autism Research and Resource Center, and the University of Miami/Nova Southeastern University Center for Autism and Related Disabilities.

There is much work to be done in order to make policy changes to meet the needs of the adult with autism. Work must be done at the local, state, and federal levels. Advancing Futures for Adults with Autism is making recommendations for new public policy as well as changes in current policy. Other areas the AFAA is working on includes national networking to advance public policy and support the lifelong living and learning with autism. Finally, the AFAA is working to build awareness and support through the media. Working to meet the needs of adults with autism is an important work, but it can proceed with the support from communities and the government.