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New Report Examines Autism Needs for Patients and Families in Pennsylvania

State-Wide Survey Led by the Penn Center for Mental Health Policy and Services Research

PHILADELPHIA –Results were released yesterday from the Pennsylvania Autism Needs Assessment, which includes feedback from 3,500 Pennsylvania caregivers and adults with autism, making it the largest study of its kind in the nation.  Among the findings, the study shows that training in social skills has been identified as the most common unmet need for both children and adults with autism.  The study also found that more than two-thirds of adults with autism are unemployed or underemployed. The survey was led by the Center for Mental Health Policy and Services Research in the Perelman School of Medicine at the University of Pennsylvania.

“The results of the needs assessment provide the most comprehensive and specific information to date about where Pennsylvania has been successful and where we still need work in helping people with autism and their families,” said David Mandell, ScD, associate director, Center for Mental Health Policy and Services Research. “My hope is that these results will be an important driver of new policy and innovative practices for years to come.”

It is estimated that autism affects approximately 30,000 Pennsylvania children and adults, and that 85 percent of these individuals also have another diagnosis such as an intellectual disability, physical health challenges or mental health issues.  These challenges greatly complicate the amount and type of services that are needed to address autism in Pennsylvania. The new information in the Autism Needs Assessment has helped to identify the specific challenges that need to be addressed. 

The survey also shows that individuals living in rural areas face increased challenges in accessing critical services and supports.  With 48 of Pennsylvania’s 67 counties designated as rural this has been identified as a critical issue.  Most notably, the study found that in rural areas, it is difficult to find doctors, dentists, or other specialty care providers trained to understand the unique behavioral challenges associated with caring for individuals with autism. 

The Autism Needs Assessment did find some positive news.  There has been a decrease in the amount of time it takes for families with young children to receive a diagnosis.  Even with the decrease, families are still waiting up to a year for a diagnosis and sadly there remain few options for diagnosing adults with autism. 

“We thank the thousands of Pennsylvanians living with autism and their families who responded to the Needs Assessment for telling us about their experiences” said Lindsay Lawer, MS, project director with the Center for Mental Health Policy and Services Research and study co-author. “The insight provided by these individuals and families offers valuable awareness of the system successes and failures upon which Pennsylvania and the nation can build.

Established in 1986, the Center for Mental Health Policy and Services Research (CMHPSR) is one of the centers in the Department of Psychiatry of the University of Pennsylvania Health System and the Perelman School of Medicine. The CMHSPR serves as one site of the ASERT (Autism Services, Education, Resources and Training) collaborative funded by the Bureau of Autism Services. ASERT is a partnership of the University of Pennsylvania, Penn State University, and the University of Pittsburgh.  The mission of the ASERT collaborative is to enhance the lives of Pennsylvanians with autism, of all ages and abilities, by improving regional access to quality services and interventions, providing information and support to families, training professionals in best practices and facilitating collaboration among providers of services throughout the Commonwealth.

For more information about study, visit at http://www.paautism.org/asert/report.html.

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Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $4 billion enterprise.

Penn's Perelman School of Medicine is currently ranked #2 in U.S. News & World Report's survey of research-oriented medical schools and among the top 10 schools for primary care. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $507.6 million awarded in the 2010 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania -- recognized as one of the nation's top 10 hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital – the nation's first hospital, founded in 1751. Penn Medicine also includes additional patient care facilities and services throughout the Philadelphia region.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2010, Penn Medicine provided $788 million to benefit our community.

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