Adults with Autism – A Little Knowledge and a Lot of Hope

Often, when we think of Autism Spectrum Disorder (ASD), the individuals who come to mind are children. But in the last two decades, diagnoses of ASD have increased exponentially.[1] The enormous number of children now being diagnosed will grow into a large cohort of adults. In fact, there already is a significant population of adults with ASD. How do we support these individuals in a world that seems more accommodating to “neurotypicals?”

As Autism Awareness Month begins, following are a few of the things to know about adults with ASD.

Be aware that adults with autism age faster.

Signs of aging for the clients Grafton serves — many of who have not only autism, but also intellectual and developmental disabilities — happen at a far younger point than in neurotypicals. We see signs of dementia and other mental health issues beginning in the 30s. And these issues compound complexity.

There are also signs of possible regression. For example, we have served one client for many years. Although he exhibited aggressive behavior in his youth, he has never done so while in our care. But now, as he is getting older, his aggression has resurfaced.

Signs of aging may be physical. It’s important to identify underlying physical health problems.

When an individual is exhibiting new or unusual behavior, it’s important that any problems with their physical health be ruled out first. Such problems will certainly affect behavior. For example, failing eyesight could cause someone to act out.

The first step is to see if there is something going on, medically. Review all medication, including psychiatric meds. Even if the problem is related to mental health, sometimes a simple change to the medication can make a difference. Always begin with the least invasive approach. In so doing, you may never need to elevate the level of invasiveness.

It truly does “take a village” – one that includes parents, providers and the community.

The best care for all individuals — children and adults — requires a strong partnership between families and providers. The love of a parent surpasses many boundaries and barriers.

But parents, particularly of adult individuals, are only a part of the solution. Put bluntly, children will likely outlive parents. I talk to parents all the time who are in tears of gratitude because their adult children are at Grafton and know they have a home now.

It’s not just families who need to embrace individuals with disabilities. As a society, we have a responsibility to encourage individuals with disabilities to continually grow skill acquisition. At Grafton, the broader community in which we live often supports us to do that. We work with the businesses and organizations throughout the region to provide volunteer and pre-vocational opportunities for clients. There are also social and leisure opportunities throughout the area.

In my experience, business, houses of worship, schools and other community organizations are not only able, but more than willing to be a part of the solution. For example, one of Grafton’s potential business partners approached us to let us know, “we want to do more than just provide services to Grafton. We want to be a volunteer site for clients, too!”

Don’t underestimate the potential of adults with ASD.

When individuals age out of school, they also age out of services. As a result, they can lose a lot the skills they may have developed. But adults have so much potential! They want to learn and are capable of learning.

At Grafton, we use Applied Behavior Analysis for adults. Often, this is one of the services individuals age out of when they are no longer in school, but we work to maintain it for adults through a consultative model. As a result, we have data that shows people continually learn in areas like self care, social communication and many other daily functioning activities. Interestingly, as skills acquisition goes up, problem behaviors are reduced. The key is to continually re-assess adults’ needs.

Always have hope.

We live in a day and age where society is far more supportive and accepting of people with disabilities. It was only a generation or two ago that people would never have been diagnosed with ASD. Individuals with complex, co-occurring diagnoses would have been in asylums. Today, the medical community has recognized people with disabilities. Society is more interested in helping them to succeed. And organizations like Grafton are supporting adults to not only live more independently, but to thrive.

[1] National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. https://doi.org/10.17226/21780.