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Image of hands, bodies, and instruments around a face: Autism is a complex developmental disability.


Autism is a developmental disorder which often affects an individual throughout the lifespan; however, only a very small proportion of autism research, education, and service endeavors address issues that affect adults with autism. The vast majority of autism research focuses on children with autism, a disproportionate number of interventions for autism are appropriate only for children, and most autism services available are geared primarily towards children. The reality is that the majority of these children with autism do typically grow up to become adults with autism who are then left with significantly fewer resources and options.

As an individual with autism transitions from high school, there are a number of post-school issues that must be considered, such as postsecondary education, vocational training, supported employment, independent living, and community participation. As individuals with autism and their parents or caregivers get older, the issue of long-term life planning becomes more salient. Caregivers must ensure that the needs and desires of their loved one with special needs will be addressed once they are gone. This can be a complex process as the individual and caregiver must make decisions regarding the individual's medical care, living arrangements, daily activities, community participation, employment, religious involvement, guardianship, and long-term financial planning. As more communication strategies become available, individuals with autism are increasingly able to communicate their own lifespan needs and desires and take a more active role in the decision-making process.

In July 2012, the NLM Family Foundation sponsored a special one-day workshop, “Living with Autism in Adulthood,” at the Heller School for Social Policy and Management at Brandeis University in Waltham, MA. The purpose of the meeting was to discuss progressive public policy and planning initiatives relevant to adults with autism. Topics discussed included employment, residential planning, family and community supports, communication, and the transition to more independent living. Please click on the link below to view a summary of the presentations and discussions which took place at the workshop.

Living with Autism in Adulthood
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