By Karen Kaplan, MS
As each of us ages, me included, we realize our needs change, our physical body requires adjustments, and our social and emotional well-being begins to be prioritized differently. So, what about our loved one with autism? They age. So, how different or how similar are their aging needs?
I recently read an article that noted the length of life for a person on the spectrum could be related to their level of autism (1,2,3). First, someone on the spectrum’s length of life has been noted to be less than a neurotypical, about two percent less. Second, those on the spectrum with more profound autism (level 3) are said to live less than typical individuals. Research is currently limited, and more evidence is needed to support these findings. However, we need to begin to understand why this data is occurring and how we can better support those on the spectrum who are aging.
As we understand the differences in those on the spectrum, such as communication challenges, sensory challenges, social differences, fears, and anxiety—which may change with support but remain throughout life, we can better understand how to support them during the aging process.
Those on the spectrum may face financial challenges due to limited career opportunities and perhaps unwise spending due to enthusiasm. There is research indicating that there is an increase in health issues related to heart, lung, and diabetes in people with autism. Some medications they take can increase the likelihood that these physical issues will appear. When there are limited social skills, there is a higher likelihood of isolation, lack of community, and, thus, depression. Those with more profound autism are noted to have greater sleep apnea, gastrointestinal issues, epilepsy, and some cancers. There is also a connection between the genetics of autism and conditions such as Parkinson's disease.
So, what skills do we, as care providers, need to adopt?
Well, we need to:
Create sensory-sensitive environments for them to age in.
Honor and encourage their gifts and interests in old age as well.
Prepare for the changes that will be occurring in their physical well-being. Diet, exercise, and sleep support are important. We need to help them understand that as we age, flexibility, balance, and strength change. We could suggest yoga, Pilates, walking up a hill, gym memberships, and, of course, dancing.
Slow down as we interact with them. We need to give them more time to process what we are saying and asking of them.
Help them identify what they are feeling and how to ask for help.
Accept their frustrations and inability to communicate in a less dramatic manner.
Support their need for routine and structure.
Develop visual supports (calendars, checklists, visual schedules, social stories).
Help find alternative communication devices when verbalization is too challenging.
Help communicate with doctors about what is happening in their minds and bodies.
Help choose wisely/problem solve (clothing for weather, nutrition, hygiene)
Adjust our communication styles (simple, more concrete, or clear).
Help create and engage in social opportunities (friends, events, activities)
Help them be great observers, find their triggers, and develop support when those triggers occur.
Everyone ages. Everyone needs support. We just need to understand their needs and support in a way that is best for their aging life.
Check out the following resources:
www.parxhhc.com (Understanding Autism in Older Adults)
www.spectrumnews.org (Growing Older with Autism)
Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor’s and master’s degrees at Arizona State University, Tempe, Arizona, in speech pathology and audiology. She minored in special education and obtained her speech therapist and special education credentials in California. Karen worked as a speech therapist for schools for 20 years before opening her own residential and education program for students with autism. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 years directing private schools for those with autism and similar learning challenges.
Karen founded a non-profit, Offerings, which helps cultures globally to understand those with developmental challenges. For seven years, she founded and facilitated an autism lecture series and resource fair in Northern California. Karen still facilitates an annual Autism Awesomeness event. She is currently consulting, helping families, schools, and centers for children, teens, and adults. Karen has authored three books: Reach Me Teach Me: A Public School Program for the Autistic Child; A Handbook for Teachers and Administrators, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, and Typewriting to Heaven… and Back: Conversations with My Dad on Death, Afterlife and Living (which is not about autism but about having important conversations with those we love).