Adults with Autism: What’s the Next Step?

elderly helping handBy Sara Cann

Twenty-two is a tough age. It is the age where college graduates fear having to search for a job—something so difficult they should make an Olympic sport of it. But consider being 22 with Autism Spectrum Disorders, a neurobiological disorder, where society is ill-equiped to offer you a job, a home and social activities. For years, researchers have looked at ASD in children, but have forgotten about what happens when an ASD child turns 22 and is left to fend for himself or herself as an adult.

One million people in America are diagnosed with ASD and about 80 percent of them are about to make the transition to adulthood and realize the entitlements and services they were privy to as children no longer exist, according to Advancing Futures for Adults with Autism (AFAA), a national consortium dedicated to improving the lives of adults with ASD.

“There is an enormous amount of work that needs to be done,” said Ilene Lainer, executive director of the New York Center for Autism, concerning helping adults on the ASD spectrum. “This is an area that has not been looked at—it has fallen through the cracks.”

Lainer explained that ASD has increased almost exponentially within the last decade—from 2 to 5 cases per 10,000 individuals to 1 in 150.

Some problems experts have identified are the lack of research about autism in adulthood, the lack of programs for adults and the lack of training for medical professionals dealing with autistic patients.

Georgia Winson, director of operations for The Autism Program of Illinois, said the medical and dental community needs a comprehensive education on how to examine a person with ASD.

A trip to the dentist can be a nightmare for an autistic child or adult. Winson said some dentists don’t know how to handle autistic patients and may have to put a patient to sleep for a routine check-up.

“General physicians aren’t trained to provide for adults with autism,” Winson said. “Even pediatricians don’t necessarily know how to work well with children with autism. Their ability is even less when working with adults.”

So what happens when an ASD child crosses into the unchartered territory known as adulthood?

The services that exist in housing, employment and community involvement for the number of adults with ASD are slim because as Lainer explained adult autism has been rarely looked at. Yet, for living arrangements, adults who are on the spectrum have five options: independent living, living at home, skill development homes (family-run homes to adults that teach life skills), supervised group living (run by professionals who teach life skills and trades) and institutions, according to

Families who care for patients with ASD may find some financial help through Social Security Disability Insurance, Supplemental Security Income and Medicaid waivers, look to for help.

For adults with ASD who are considering living in a group home and don’t mind moving to North Carolina, the Carolina Living and Learning Center has a free vocational and residential housing program in Pittsboro, N.C. as part of the University of North Carolina at Chapel Hill. They provide treatment, skill training and active research. There are few types of housing accommodations and Carolina Living and Learning Center only accept applications when there is an open spot in the house. Check out

Equal employment opportunity for adults with ASD is a large area of concern on advocates’ agendas, but Lainer from the New York Center for Autism said Walgreens is forward thinking compared to most American businesses. They have customized their warehouses to adults with ASD. She said Walgreens developed a system of iconography for all the computers in their warehouses to aid ASD employees who have trouble with reading comprehension.

“What they found by making the plant more accessible—for physical as well as mental disabilities—the company was 20 percent more efficient,” said Lainer.

Yet the areas of housing, employment and community involvement for adults with ASD are scarce considering the increase in diagnoses. To try and provide for the future and create solutions to the ill-equipped resources society has at the moment, the AFAA has created a three-phase national agenda to make inroads in this movement.    Employment, housing and community involvement are three key areas the AFAA are focusing on. The consortium created a Think Tank in January made up of 60 experts from all fields to tackle these three fields.

Participants in the Think Tank identified the problems within these areas and “created visions” and broad solutions for the next five years. One solution they brainstormed is to create a national public awareness campaign to debunk myths about autism.

“There is a lot that our government can do, but there is also a lot that we can do as a society,” remarked Lainer.

In November the AFAA will further develop the proposed Think Tank solutions to create a national agenda for adults through a virtual Town Hall Meeting.

Then in 2010, the AFAA will hold an “Autism Congress” where they will present an implementation plan, according to the Think Tank summary report.

So for the moment, there may not be many options for adults on the spectrum, but 60 experts and many advocates have put their minds together to create a better future with resources and options for the autistic kids who are about to age out of the system.

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