PORTRAITS OF AUTISM
Portraits of Autism follows families providing care for 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.
New York, N.Y. (March 31, 2016) – The Centers for Disease Control and Prevention (CDC) released its newest estimate of autism prevalence among the nation’s children. The report shows that, overall, less than half the children identified with autism (43 percent) had received comprehensive developmental evaluations by age 3. This proved true despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before age 3. Currently, autism can be reliably diagnosed by age 2, with earlier diagnosis affording greater opportunities for intervention that supports healthy development and improves function and quality of life.
The new report also found that black and Hispanic children continue to receive developmental evaluations later than white children and continue to be diagnosed with autism at lower rates. In addition, the newest estimate of autism prevalence among the nation’s children remained unchanged, at 1 in 68, from two years ago.
In our society there is a tendency toward a lack of representation or misrepresentation of people with disabilities in the media and the arts. Where the media holds a high level of influence over the perceptions of the general public, an under-representation or mis-representation of disabled people has large social implications. Portraits of Autism seeks to create a platform for social awareness while opening up a discussion about available support systems and funding for both children and adults diagnosed with ASD. The focus of each portrait is to provide an emotional experience and public connection to each subject as a unique individual who is not only defined by their “disability”.
The 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.
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?
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
A Complete Portrait, Provincetown Magazine, By Steve Deroches July 27, 2017 Cover, p. 40
Deborah Martin's Art Makes a New Connection The Provincetown Banner By Susan Rand Brown July 27, 2017 pp. B9, B11
Freedom to Make a Difference, ARTS+CULTURE, Palm Springs Life Magazine, By Mona De Crinis Winter/Spring, 2016 pp. AC26, AC27