A better understanding of neurodiversity is leading to growing numbers of people over 50 being diagnosed on the autism spectrum. Roughly a million seniors could be living with autism, many of them undiagnosed, if CDC estimates are correct and adults are affected at a rate of 2.21%.
More conservative calculations suggest there are tens of thousands of older adults in the U.S. who are undiagnosed.
“We definitely missed generations of people on the spectrum,” said Theresa Regan, PhD, a neuropsychologist and certified autism specialist.
How to spot autism in older adults
Autism spectrum disorder is a neurological and developmental condition that affects executive functioning as well as behavior. As adults age, they go through a number of life changes that affect their behavior and functioning as well. Those life changes can amplify the symptoms of undiagnosed autism and make it more obvious to caregivers and family that something is going on.
Here are some signs to watch for if you’re concerned the senior in your life might need to be evaluated:
- Exhibits intense interests
- Avoids social situations
- Doesn’t enjoy hugs
- Experiences sensory sensitivity (loud noises, bright lights, overwhelming smells, tastes, textures, etc.)
- Shows a strong preference for things to be done a certain way
- Avoids eye contact or stares intensely
- Has concurrent mental health diagnoses such as depression or bipolar
- Experiences anxiety with an unclear cause
- Becomes blunt (speaks without considering how their words will be received)
- Struggles with understanding emotions (alexithymia)
- Doesn’t grasp nonverbal cues
- Becomes routine-oriented
- Lives with lactose intolerance or other gut issues
Autism can also present differently in women, possibly due to an increased ability to mask behaviors in social situations. Their interests, though intense, are often seen as more socially acceptable and therefore are not as likely to be taken as obsessive. Women with autism are often mistaken as shy or withdrawn. That their behaviors tend to manifest more with nervousness may reinforce this.
“One of the biggest flags for me would be a family history of diagnosis,” Regan said.
She pointed to the fact that autism is genetic, so if grandchildren are getting diagnosed, the grandparents of the family may need to be looked at as well.
What can you do?
If you suspect a senior in your life might be struggling with the symptoms of undiagnosed autism, it’s a good idea to have them evaluated by an autism specialist. Because older people on the spectrum are often misdiagnosed as suffering from the aging process, Regan advised you seek a professional who can evaluate them for both dementia and autism.
She expressed that this can be difficult because most dementia specialists are not experienced with developmental disorders and a lot of the dementia evaluation methods are about finding unevenness (which is also an aspect of autism)—which is why these consultations are so important.
“If someone gets a cognitive assessment at one point and then again a year later and they do not show a decline,” she said, “that suggests it’s developmental not dementia.”
It’s important for family and caregivers to meet with any professionals who are evaluating their loved one. Not only can they give important information about what it’s like to live with the individual but they may be able to tell stories from the person’s childhood that can assist with the diagnosis.
Missed diagnoses are common among seniors due to the condition not being fully understood when they were younger. Many may have displayed behaviors in their younger years that parents dismissed as strange without realizing they were symptoms of something larger.
Regan relayed this story on The Testing Psychologist podcast:
“So for example, a couple that I was working with said, one of his mom’s stories was that every night before he went to bed when he was like two, three, four, he’d be on his hands and knees on the mattress and he’d rock back and forth and he’d hit his head, bang his head on the headboard. And they took a photo of the headboard and the whole finish was worn off because of all the times that he would rock and bang before he could regulate himself to sleep.”
Additionally, there may have been clues that presented in earlier adulthood, such as unemployment or hopping from job to job, shutoffs and evictions due to forgetting to pay bills, and homelessness.
Autism spectrum and aging
“Because autism reflects neurological wiring, the way autistic characteristics are experienced and expressed can change based on biochemical hormones and aging,” Regan explained. “Things that were challenging can become more so.”
In addition to the effect of aging itself, she described how having less structure in the day after retirement can make executive function – which is already strained – harder for older adults on the spectrum. This means skills like planning ahead, prioritization and getting started on a task can become even bigger struggles. For some that may mean falling into a rut of watching television all day, for example.
A big issue with aging and autism occurs when a person’s ability to regulate their nervous system is challenged by declining abilities. They may not be able to get the inputs they’re used to – such as through exercise – and will need to be more intentional about finding ways to self-regulate.
After a diagnosis
“Families are hungry for an explanation,” Regan explained. “It’s very easy to take things personally if they don’t understand what is going on.”
A small study out of Cambridge University found positive effects among adults who were diagnosed after the age of 50, including feelings of validation in regards to their life experiences. In addition, late-in-life diagnosis can also lead to finally receiving the support the person needed all along.
A diagnosis can also help families and caregivers better focus their strategies, Regan said.
“If the brain can’t assign meaning to something, there is no point in talking about it or telling people to do better or try harder as that strains relationships.”
How to help an older adult on the autism spectrum
Caregivers can help seniors on the spectrum by:
Sticking to a routine
- Being sensitive to communication and sensory needs
- Giving support
- Encouraging social interaction
- Offering activities that will help with self-regulation of the nervous system