Survey points to gaps in Pennsylvania autism services

A new survey sheds light on the needs for services and opportunities for the 30,000 children and adults affected by autism in Pennsylvania.

About 3,500 Pennsylvania families and adults affected by autism responded to the “Autism Needs” survey. They answered questions about access to care, how old they were when diagnosed, and barriers to employment and independent living.

The age of diagnosis has been going down, which means children are diagnosed earlier, according to the survey findings. Intervention programs are beginning earlier, the survey found. People in urban areas have better access to care than those living in rural areas.

Pennsylvania’s Bureau of Autism Services in the Department of Public Welfare commissioned the survey as a way to get a better sense of the needs of those with autism. “To really move beyond sort of having a hunch that we had a real challenge across the system to address the needs of this exploding population,” explained Nina Wall-Coté, who heads the bureau.

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Thanks to the survey, hunches have been replaced with clear numbers, she said.

The survey’s findings point to many gaps in services for adults living with autism. For example, more than two-thirds of adults with autism are unemployed.

“We saw, especially as individuals aged, there was a tremendous need for vocational services for employment opportunities and counseling that just don’t exist currently, and that we have to work very hard to create,” says David Mandell of the University of Pennsylvania’s Center for Mental Health Policy and Services Research, which led the survey

This may prove an especially tough challenge given Pennsylvania’s budget crunch. Some of the existing state-funded services that help individuals work and live independently were slated to be greatly reduced. Disability advocates have filed a lawsuit that has delayed the service cuts for now.

Adults living with autism also reported unwanted contact with law enforcement officials, as well as being hospitalized because of aggressive behavior, one of the possible symptoms of the disorder. Mandell said that indicates law enforcement officials and first responders need training to better understand the behaviors of people with autism.

Going forward, Wall Cote says, governments cannot shoulder the financial burdens of providing services alone. She hopes that the survey results will serve as a starting point to involve communities, advocates, and businesses in finding solutions.

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