Focusing on the realities of aging with autism

white-haired woman gazes out window
Aging with Autism

In recent years, more attention than ever has been focused on people on the autism spectrum. There has been a rise in the number of young people diagnosed, which is a result of a variety of factors, including an increase in societal awareness and recognition of the symptoms of autism. However, much of the information on the autism spectrum is limited to children. Both the Center for Disease Control and Prevention’s Autism Spectrum Disorder Data and Statistics page and Autism Speak’s Facts about Autism page discuss autism as if the disorder only occurs in children, solely mentioning adults when addressing the parents of children with autism.

On the other hand, however, it should be recognized that the Autistic Self-Advocacy Network, or ASAN, highlights the importance of recognizing and empowering adults with autism. ASAN discusses supporting adults with autism who are pursuing college degrees, overcoming barriers in the workplace, the need for additional funding for community services and supports for adults with autism, the importance of life-long access to health care, and the right of adults with autism to have families and end discrimination regarding child custody.

In an article for The Guardian, “I’m scared to be an older person with autism,” author Susan Dunne addressed the need for increased awareness along the line of ASAN’s work regarding adults with autism. Dunne has Asperger syndrome, and speaks openly about the fear she has about growing older without support systems in place for adults, especially elders, with autism. Due to the lack of research and knowledge around adults with autism she discusses the high probability of adults with autism who have been misdiagnosed or undiagnosed mistakenly be identified and treated for mental health issues or dementia. “This matters,” Dunne states, “as the isolation that many people on the spectrum experience due to social and communication difficulties is likely to worsen with age. When you have very limited support networks, you may become increasingly reliant on social care.” Dunne goes on to explain how often times, adults with autism substitute social relationships with “intense areas of special interest,” and questions how this will play out when adults with autism need extra care, cannot maintain those special interests, or when they cannot fit into nursing homes. Dunne is not the only one concerned about these issues – James Cusak, the research director of the British autism research charity Autistica, states that, “We don’t even have a basic understanding of how to support adults with autism as they age”.

Dunne also points out how essentials for coping with the symptoms of autism – rigid routines and privacy – are not always possible in today’s systems for caring for seniors, saying that, “With autism it is easy to be overwhelmed by sensory input from noise and people standing too close. Having a chirpy care worker turn up at unexpected hours to make small talk and suggest joining bingo at the day centre is unlikely to be of benefit, however well meant.” She outlines the type of support she would desire from health and social care professionals in her future, such as an understanding of her need for consistency and routine, the need to avoid loud noises and sudden touching, and emphasizes that she does not want to be stereotyped as having mental health issues simply due to the fact that she is not neurotypical. However, Dunne concludes that “given the present lack of research, knowledge and training in aging and autism, I’m not optimistic that any of this will have happened by then.”

Fortunately, there are organizations in addition to ASAN who recognize this issue and are taking action. The Autistic Global Initiative, a project of the Autism Research Institute, is dedicated to fostering “the development of adults on the autism spectrum and those who work with them and for them,” according to their mission statement. They have addressed the lack of research, programs, and services around adults with autism, citing that eighty percent of the 1.5 million people on the autism spectrum are under the age of twenty-two, and stating that, “As these young people with autism age into the adult years, existing programs and services will be overwhelmed. Families, professionals and individuals with autism face significant challenges in the upcoming decade as our community anticipates an exponential rise in the need for adult programs, living options, and employment across the spectrum.” The AGI plans to focus on initiatives specific to addressing the concerns of and providing support for adults with autism.

Emily Pate is a third-year student at Seattle University interested in Strategic Communications, learning Spanish, and working with non-profits. Her work for Rooted In Rights is focused on discussing current events in the community of people with disabilities. Her experience previous to Rooted In Rights includes writing broadcasts for KBOO radio in Portland, OR, and managing a neighborhood blog in the Seattle community. In addition to work, Emily enjoys drawing, spending time with her friends and family, and backpacking.