PORTRAITS OF AUTISM
“Portraits of Autism” follows families with a child or adult diagnosed with Autistic Spectrum Disorder (ASD) on a continuum as they cope with navigating funding for therapeutic and educational support programs and housing. By the time these children reach the age of 21 they will have “aged out” and all federally subsidized educational funding and support will be discontinued. The family is then forced to rely on any state funding and programs that can be difficult to navigate and may or may not be available. The financial support used to find housing, job training and continued therapeutic and educational support will diminish at the exact moment when it is needed most. A fundamental shift to Medicaid would have far-reaching consequences for people with disabilities, affecting the availability of everything from health care to home and community-based services. The fiscal sustainability of Medicaid is essential to making sure that those who depend on the program can know it will be there for them in the future.
For hundreds of thousands of adolescents with autism about to become adults, there are very few programs or little to no housing available. For those desperate to find a solution, it is a “public health crisis.” Roughly 500,000 children with autism will become adults over the next 10 years. According to recent statistics Autism is the fastest-growing developmental disorder in the US with 1 in every 68 children diagnosed with ASD.
For many families raising a child on the autistic spectrum there is a persistent fear and concern for their child’s future. This becomes increasingly disconcerting as parents begin to look at the reality of what may happen when they are no longer alive or become incapable of caring for them. Small children are the public face of autism, their appeal helping to win public understanding and educational support. Will there be public support for them as adults?
This project focuses in part on relationship, connection and methods of communication. In order to relate to a person with autism one must set aside all preconceived ways of “typical” social interacting. Because of the Americans with Disabilities Act, we have seen significant changes in our environment. As a society, we have gotten comfortable with the idea of accommodations for people with physical disabilities. For people with extreme behavioral challenges of autism, society is almost at a loss as to what to do for them. One third of children with autism never speak, only making grunts and high pitched sounds.
It is a misconceived belief that by the time a child with Autism reaches the age of 21 they will smoothly make the transition into adulthood without special guidance and continued support. For many families the option to send their autistic child to a group home or some other type of institution (if even available) is heartbreaking and not an option they are willing to consider. For others, the often difficult choice to find a residential school or group home is necessary for the well being and safety of the child and family as a whole. As parents age often the role of guardianship for the adult with ASD is passed on to a sibling or other family member.
For more information about this project contact Deborah Martin
Recent Press: Palm Springs Life Arts+Culture Winter/Spring 2016 Freedom to Make a Difference