Additionally, concerns about future planning, such as securing stable housing and long-term care become more pressing, particularly for those who lack a strong family support system.
Jeff Rickel, a database manager at Autism Speaks, was diagnosed with autism and ADHD later in life. He is navigating these challenges while caring for his 28-year-old son Jonathan, who has co-occurring autism and Down syndrome.1 With each passing year, Jeff confronts new obstacles, from managing Jonathan’s growing health needs to grappling with the inevitable changes that come with aging. Yet through it all, Jeff draws strength from his faith and from Jonathan’s resilience.
Finding Self-Acceptance in a Diagnosis
Many older adults grew up in a time where autism was less understood, leading to countless individuals navigating life undiagnosed. As awareness of autism grows, an increasing number of adults are receiving a diagnosis later in life.2
Some adults may not receive a diagnosis because they don’t realize their behaviors are linked to autism, have learned to mask their autistic traits, or find the process of getting an autism diagnosis expensive or inaccessible. While many undiagnosed adults live happy lives, others struggle to feel accepted or fulfilled in their lives.
This was the case for Jeff before he got his autism diagnosis. Throughout his life, Jeff struggled with depression, decision making, impulsivity, and feelings of worthlessness. When his mental health deteriorated to the point where he considered suicide, Jeff knew that it was time for a change.
“I was messing up all the time, being impulsive, and making the wrong decisions. I would beat myself up every time I made a mistake. Honestly, I thought the whole reason I existed on earth was to mess up my life and the lives of people around me. I didn’t think there was anything in me that was any good or of any value,” he says.
Discovering his faith played a crucial role in his journey toward fulfillment and self-acceptance, gradually allowing him to see the positive impact of autism in his life. In his church, Jeff found a community of supportive people who accepted him despite his differences. Attending regularly helped him learn to socialize and make friends, many of whom have been a source of strength and support for Jeff, Jonathan and his wife Esther, ever since.
Later, getting an official diagnosis offered clarity, helping Jeff understand his behaviors and lifelong challenges.
“For a long time, I felt like the incredible Hulk, like I had to keep this monster inside and never let it come out. Getting an autism diagnosis helped me understand what was going on and what areas of my life I had to be careful of. Eventually, I realized that there are parts of autism that are good. I started seeing myself as a human being with both strengths and barriers. I realized I can accomplish things and that I’m a worthwhile person. Now, I wouldn’t trade my life for anything.”
Understanding his autism helped Jeff learn to advocate for his needs, as he navigates his life. “Don’t be worried about the negative stigma associated with an autism diagnosis. It’s something you need to be aware of,” he explains. “When you go somewhere, you need to be able to say, ‘I’m autistic, please bear with me.’ Most people are very willing to accommodate.”
Getting an Autism Diagnosis As an Adult
The only way to know for sure if you are autistic is to get a formal diagnosis. The gold standard is to obtain a diagnosis from a psychologist, psychiatrist or similarly trained clinician who specializes in autism spectrum disorder (ASD). You may want to start by making an appointment with your primary care physician.
You can also check with a respected autism center in your area, like those in Autism Speaks Autism Care Network,3 or check with your insurance provider.
What is the Process for Getting an Adult Autism Diagnosis?
There is not one autism test for adults. Instead, an autism evaluation typically consists of multiple appointments with a clinician. The process involves talking with the clinician, doing some cognitive activity-based tests, and filling out a couple of questionnaires.
Getting a diagnosis as an adult can be more challenging than getting one as a child. Oftentimes, healthcare professionals ask adults seeking a diagnosis or their loved ones questions about their early development, which some people may not have answers to.
A history of other diagnoses may also complicate getting an autism diagnosis. You should expect your doctor will want to rule out other conditions that commonly co-occur with autism, such as ADHD, anxiety and depression.
Putting Health and Wellbeing First
Accessing quality healthcare is another major hurdle for aging autistic adults. Many healthcare providers lack the specialized training needed to effectively support autistic patients, which can lead to inadequate treatment. Sensory sensitivities and communication differences may not be accommodated in all medical settings, causing significant stress and anxiety and often leading people with autism to avoid seeking medical care altogether.
“In general, research shows that autistic adults’ lifespans are somewhere between 15 to 20 years shorter than the neurotypical population,” says Dean Hartley, senior director of genetic discovery and translational science at Autism Speaks. “Two contributing factors are inequity in healthcare and high rates of co-occurring conditions. Most adults who have autism either have never been diagnosed or have been misdiagnosed. They have difficulties making an appointment and finding autism-friendly providers who can accommodate their sensory sensitivities. As a result, they often avoid the healthcare system. In the long term, that means that they have more health issues, often preventable conditions like: diabetes, obesity and cardiovascular issues.”
Research shows that autistic adults face a higher risk of physical and mental health challenges. A 2020 study4 showed that older adults with autism are 19 times more likely to have epilepsy, 6 times more likely to have Parkinson’s disease, 25 times more likely to have schizophrenia, 11 times more likely to have suicidal thoughts or self-harm behaviors, and 22 times more likely to have ADHD. Because most autism research has been focused on children, researchers know little about how physical and mental health issues unfold over an autistic person’s lifetime and how aging complicates their healthcare needs.
Jeff has experienced some of these challenges firsthand, noting changes in his health as he ages. He has had to adopt new strategies to manage increased impulsivity, memory loss, and difficulty with executive function and multitasking.
“I’ve had to start focusing on one task at a time and organize my time better,” says Jeff. “I’ve learned that this is a normal part of aging. You have to learn to cope and adapt to the aging process. You’re not as strong, you’re not as fast, your body is going to hurt, so you need to be more careful. You need to understand your limitations and accept that things that were a little bit of a problem before, might become a bigger problem, and the things that you didn’t think were a problem can become one.”
Finding quality healthcare has also had its challenges. Jeff recalls struggling to learn proper dental care techniques, and only finding a dentist who could help him after years of damaging his gums.
“I find that I have to be more open with the doctors about my autism. In mental health, if you look around, you can find people that deal with autism. It’s just a matter of finding the right provider. For physical healthcare, it’s more difficult, but I look for people who can set me at ease and communicate well. You don’t want someone who will rush you through the process.”
Jeff has had similar difficulties finding providers for Jonathan, that were covered by his insurance.
“We had significant problems with Jonathan's healthcare before he went on Medicare,” explains Jeff. “Because of his special needs, we used to have problems finding doctors in network who could treat him, and there were often problems with insurance. Resolving this required strong advocacy and several appeals within the healthcare system, even up to state level.”
For aging autistic caregivers like Jeff, prioritizing self-care is essential for maintaining good mental health. Jeff’s role as a caregiver has become increasingly demanding due to Jonathan’s evolving care needs. Jonathan’s back injury forced Jeff to make significant lifestyle adjustments for Jonathan’s wellbeing, such as using a wheelchair for longer distances and providing close supervision to his son.
Jeff views his role as Jonathan’s caregiver, as both an honor and a responsibility, but he also recognizes the toll it takes on him and the need for rest.
“I feel like I’ve been entrusted with the greatest treasure in the world,” Jeff says. “I am honored that God chose my wife Esther and me as parents to Jonathan, and I want to live up to that trust. But the caregiver fatigue is there. Learning how to take care of myself, to find hobbies that I enjoy, while still taking care of the family has been essential. When I do that, there’s more to give others in the long run. The best gift Esther and I can give to Jonathan is to be strong, loving, healthy parents.”
Planning for The Future
One issue that is always at the top of autistic adults’ and caregivers’ minds is future planning. Families and caregivers must consider long-term plans for housing, healthcare and financial stability to ensure the wellbeing of their loved ones as they age.
Legal and financial planning, such as establishing trusts, conservatorships and guardianships, can provide security and support for the autistic person as they age. It is crucial that caregivers involve the person with autism in these decisions, respecting their autonomy and preferences for their future.
As Jeff and Esther age, planning for Jonathan’s future has become increasingly urgent. Jonathan’s back injury has complicated their original plans, making it harder for him to achieve the level of independence they had hoped for. While they have already set up a conservatorship for Jonathan, they are working to identify additional conservators who can guide Jonathan’s financial decisions. Jeff is also focused on setting up a special needs trust to ensure that Jonathan will be cared for after they are gone.5
Another key aspect of their planning involves building a strong network of people in their community who will look out for Jonathan. Loss of parents and other caretakers can be devastating for an autistic person’s emotional and practical support system. Jeff is determined to make sure this doesn’t happen to Jonathan.
“We want to make sure his life doesn’t fall apart after we’re gone,” he says. “Our church has been very active with him, but we had to stop coming because of his back injury and COVID. I need to get him back into that, because he needs other people in his life. We are considering moving closer to family, and have thought about places like retirement communities, where he can continue to live with us and inherit the house afterwards. It’s important for me to get a group of people around him who will look out for him.”
With the right support systems, thoughtful preparation and a strong community, autistic adults and their caregivers can navigate the complexities of aging, and continue to thrive.
References
- https://www.autismspeaks.org/down-syndrome-and-autism-spectrum-disorder-ds-asd
- https://www.autismspeaks.org/adult-autism-diagnosis
- https://autismcarenetwork.org/locations
- https://pubmed.ncbi.nlm.nih.gov/31773968/
- https://www.autismspeaks.org/tool-kit/financial-planning-tool-kit
ABOUT THE AUTHOR:
Marta Chmielowicz leads science communications at Autism Speaks, working to advance the mission of the organization to create an inclusive world for all individuals with autism throughout their lifespan.
Read the article here.