Five Principles for Supporting Aging Autistic Adults

About Catie Ryan

Catie Ryan is a Clinical Case Manager/Personal Advocate with AANE’s LifeNet program. Catie is a licensed occupational therapist who has been with LifeNet since 2019. She previously worked for a large multi-service provider in Massachusetts, trained at Kennedy Krieger Institute’s Center for Autism and Related Disorders, and is a Leadership Education in Neurodevelopmental Disabilities (LEND) fellow.

Aging inevitably presents a number of anticipated and unexpected changes in a person’s life. There can be more time and freedom to engage in activities of choice, but it can also be a time when individuals need more specialized support in areas like health care, transportation, and social services. This frequently means individuals will need a larger network of professionals in their life.

Aging individuals who are also Autistic may have unique experiences and needs. AANE LifeNet Clinical Case Manager/Personal Advocate Catie Ryan, MS, OTR/L sees this first-hand in her work and notes how important it is for professionals to understand the dual needs of adults who are Autistic and also aging. “Human services in general have come a long way, but I think we’re often still very siloed. You’re an expert in autism or you have expertise in elder care. They can often be very separate,” she explains. “When you have this intersection of someone who’s aging and Autistic…you might have to expand your knowledge to understand and meet their unique needs.” Catie shares five key points for professionals to remember when working with older Autistic individuals.

1. Understand and respect a person’s process.

Many older Autistic adults have lived the majority of their lives without knowing they were Autistic and before the diagnosis of autism was even established. “The older adults I have the privilege of working with were really forging the path before there was even a path to be forged. There wasn’t anything. They were just trying to figure it out, navigating this world that has changed so much over decades and decades,” Catie said.

As an aging Autistic individual needs more support, making drastic changes doesn’t make sense in many cases. “Over the years, they have developed their own techniques and strategies for doing things,” Catie explains. “If they’ve been taking their medications on their own for decades, it can be off-putting or even harmful to jump in and say, ‘Hey, let’s change your whole system and start over.’ Instead take the time to understand what has been working, what may no longer be working, and, if there is room for improvement, offer an opportunity to share a new strategy or approach by saying ‘How do we take your system and maybe introduce a little bit more ease to make that doable for the long run?’”

2. Keep communication directed to and in service of the Autistic individual.

When older adults have someone accompany them, especially for medical appointments, there is a troubling tendency for them to be left out of the conversation. This is even more prevalent when the patient is Autistic. “We do a lot of preparation for appointments making sure the adult feels comfortable,” said Catie. “We ask them questions like, ‘What do you want to leave this appointment with?’ I know if the medical professional starts talking to me, I typically don’t answer directly back. I’m always looking at the adults and asking, ‘What do you think of that?’ That can be an indirect way of letting the medical professional know, ‘Hey, actually this is your patient.’” When needed and with the adult’s permission it may also make sense to follow up with the medical professional directly either to offer feedback or brainstorm how to improve the older adult’s experience at future appointments.

But Catie also sees her presence as an important way to optimize the adult’s experience. “Unfortunately, especially in the medical setting, time is so limited and doesn’t allow for somebody needing a little bit more time to process or respond or ask questions. The doctor knows the routine, but the patient has waited x amount of months or years to be in this room and may only have 10 or 15 minutes. I can be that buffer to slow things down and make sure they’re getting all their questions answered and are walking away feeling like they understood the situation, recommendations, next steps, etc.” This can be a challenge for Autistic adults at any age, but as health problems often increase as we age, it is especially relevant for many older Autistic adults.

3. Think about the whole person, not just the issue.

Many who work in elder care may have an expertise in the issues frequently faced by an aging population, but they do not always account for differing neurology with the solutions they create. Catie sees how detrimental this can be. “I think of folks on the spectrum in a hospital or nursing home and the noise or other intense sensory experiences that are common in those settings. Oftentimes, you fit into the system or you don’t and we have a long way to go in terms of those systems adapting to the needs of Autistic individuals or various other profiles. Unfortunately, and understandably, it also makes it challenging for Autistic individuals to seek the care they may need because of those adverse experiences where their needs were not recognized.”

Because all adults often need more medical care as they get older, Catie sees this as the area in most need of change for older Autistic individuals. “I think introducing some more flexibility, knowledge, and understanding, and working with the individual would be amazing. The more we can make that a comfortable experience and a positive one, the more likely they’re going to go back and get the care that they deserve and that other people might be accessing. There is comfort in being able to walk in and feel like people understand them, adjust their own expectations or routines, and just see them for who they are.”

4. See the advantage of established routines and interests.

Routines can be an incredible asset as Autistic individuals age. “If you’re somebody that can find a routine that works and then stick with it regardless, that’s so helpful as you get older because that’s helping you deal with potential memory challenges, sensory changes in terms of eyesight or hearing, or other common experiences of aging,” Catie said. “If you already know your routine and you do the same thing every day, that can be an amazing strength that neurotypical folks don’t always have.”

Strong interests can also be an anchor for Autistic individuals. Changing physical abilities or other kinds of limitations might alter the way a person pursues their interest, but finding creative ways to stay engaged with that activity provides immense joy and maintains connection. “When you have this really amazing interest that you can research, talk with others about, go to lectures about or whatever it is, it can be really sustaining and I think helps people stay active and connected as they age,” said Catie.

5. Listen, and recognize the value of experience.

Taking the time to really hear what a person has to say about their life and experience is immensely important for both the speaker and the listener and also builds rapport in the professional relationship. “Hear from the adult and give them the space and the time to reflect on their lives,” Catie recommends. “We know that an important part of aging well is reflecting on your past, reflecting on where you went in life, the choices you made, and the adventures you’ve been on. I think that’s a really valuable intervention and path of support that we can offer older folks, be curious about their experiences, be that listening ear and that source of validation.”

“I love working with older folks and hearing about their lives and their perspectives,” Catie reflected. “I think it’s just so valuable, whether they’re Autistic or not.”