We hear a lot about autism, officially known as autism spectrum disorder (ASD). In fact some people believe there is an autism epidemic, though that claim is certainly controversial. Regardless, there is no refuting the fact that we are more aware of autism now than ever before.
We talk about early diagnosis, support and treatment, and how to best help those who are, as we say, “on the spectrum.” Usually, we are talking about children or young people. But what about those over 50 (including those who might have been diagnosed in recent years because autism was rarely diagnosed when they were children) who are searching for support as they age?
We are largely dealing with unchartered territory. There is a shortage of research on older adults with ASD and a lack of viable plans for short-term and long-term care, even though this demographic is a growing population. Indeed, the needs of those with ASD vary greatly. Those with severe ASD might be nonverbal and need assistance with all activities of daily living, while others with milder ASD are capable of caring for themselves.
Life expectancy rates in the Unites States are increasing, and that includes the lifespans of those with ASD. A recent article published in the American Journal of Autism found there is much discussion about how scarce the research is on ASD in older adults. Researchers conducted a study of 45 people who either cared for people with ASD or had the disorder themselves. Participants were most concerned about long-term management, diagnosis and awareness of ASD in relation to aging. They also identified major concerns about care, and expressed the need for person-centered care as well as long-term support and care in their communities. Many difficulties faced by older people with ASD were identified, such as social isolation, social problems, issues with communication, problems with finances, lack of support with personal care, lack of advocacy, inadequate health care and housing, and lack of job availability.
So many concerns! While all elderly people should have access to social activities, housing, preventive healthcare, and work if appropriate, it is clear that those with autism have additional needs. Given the fact that special education services end when an individual turns 21 years of age, there is a big gap in services available for young adults all the way into old age. We have a lot of work to do!
It’s complicated because, as mentioned before, those with ASD have varying needs. Still, as the above study notes, adult-specific programs may include supporting the transition from secondary education into a school or work program, vocational training, and discussing living independently. While children’s treatment involves providers and parents making medical and social decisions, goals for adults are more geared toward the patient and require more individual quality-of-life decisions including management of symptoms and self-acceptance. Indeed, when possible, those with ASD can learn to be their own advocates, perhaps alongside adults with ASD who have already become successful self-advocates.
As new programs and support services are hopefully created and developed in the years to come, we should not lose sight of the most basic, and important, right. Those with ASD, like all of us, deserve to be treated with respect and dignity.