- Autism was barely diagnosed in anyone before the 1990s unless they also had an intellectual disability. If you were born before about 1980, nobody was looking.
- Most people diagnosed after 50 were treated for anxiety or depression for decades first. That treatment wasn't wrong, but it wasn't the whole picture.
- In the one study that asked people diagnosed in their fifties, the diagnosis was described as relief and a "eureka moment," not a loss.
- Grief for the years before is normal and usually comes a few weeks after the relief. Both are allowed.
- You don't need a childhood report card to be assessed. Your own memories count, and so do a sibling's or an old friend's.
- Nothing about this diagnosis means decline. It describes how your mind has always worked.
Why it was missed
The diagnosis you may have heard of as "Asperger's" entered the American manual in 1994. Before that, autism meant a child who didn't speak and needed a great deal of support. If you spoke, went to school and held a job, nobody considered it. Girls and women were missed for longer still; the description was written from boys.
So if you are 55 or 70 and reading this, your timing is not strange. It is the first time the information has been available to you in plain words. People in your position are now one of the fastest-growing groups getting assessed.
What people describe
Researchers at Anglia Ruskin University interviewed adults diagnosed in their fifties. Before the diagnosis, the people they spoke to had often felt "alien" or like a "bad person," and had been isolated since childhood without knowing why. Several had years of treatment for depression or anxiety in which autism was never mentioned. After the diagnosis, the same people described relief, and said it let them re-read their whole life: why others had reacted to them the way they did, and what they had actually needed all along.
Relief first
"So that's what it was." Most people feel this first. It can last weeks.
Then grief
For the job you left, the friendships that failed, the help you never got. This is grief for real losses. It passes, but not on a schedule.
Then anger, sometimes
At teachers, doctors, parents, or yourself. You were working with the information everyone had at the time.
Re-reading your life
The Rewind was built for this. One chapter at a time, in private.
Telling people, or not
Adult children often take it well; they may have wondered. A spouse of 30 years may need time. Scripts are here.
No need to change
You have decades of workarounds. Keep the ones that work. Drop the ones that only ever served other people.
Getting assessed later in life
The process is the same as for any adult (here, in full), with three differences worth knowing.
- Childhood evidence. Assessors like to hear about you as a child. Your parents may be gone. Your own memories are evidence. So are a sibling, a cousin, an old school friend, report cards, or a letter from a teacher. "I remember lining up my cars and hating the sound of the hand dryer" is enough to start.
- Some clinicians will say "at your age, why bother?" That is their limit, not yours. The study above found the diagnosis changed how people understood themselves and what support they asked for. If a clinician says this, ask for a referral to someone who assesses adults, or see how to find one.
- Medicare. If you are 65 or older in the US, Medicare Part B covers diagnostic psychological testing when a doctor orders it as medically necessary. Ask your primary care doctor for the referral and use those words. Self-pay prices are on the assessment page.
You can also decide not to be formally assessed. Self-identification is valid at any age, and most of MOEˣ works either way.
Your body at this age
Three things that come up often, in plain words. Information, not medical advice: bring any of them to your doctor with the doctor card.
- Menopause. Autistic women in a 2021 study described menopause as a time when coping, mental health and daily functioning got markedly worse, and when sensory sensitivities and masking became harder to manage. Several were diagnosed autistic only because of it. If your fifties felt like a cliff, this may be part of why. Doctors know very little about this overlap; you may have to explain it.
- "Is it dementia?" Autistic traits can be mistaken for cognitive decline by someone who doesn't know you: literal answers, trouble with open questions, not catching a clinician's tone. If you are tested for memory, tell the tester you are autistic and ask for written questions. Autism itself is not a form of decline and has not been shown to cause dementia.
- Other conditions. Research on autistic adults over 65 finds higher rates of many physical and mental health conditions than in other adults the same age, and less use of preventive care. Translated: go to the appointments, and bring the card so you don't have to explain yourself out loud.
Retirement, routine, and the people around you
Retirement can remove the structure
Work supplied a timetable, a reason to leave the house, and a script for talking to people. When it ends, some autistic adults thrive and some collapse. If you are collapsing, it is the structure you lost, not your character. Rebuild a weekly shape with the energy budget.
Focused interests are protective
Time spent on your interest is linked to wellbeing in autistic adults. At this age nobody can tell you it's a waste of time. Make it the spine of the week.
Burnout has a name now
If you have had years where you could barely function and nobody could explain why, read autistic burnout. Many people diagnosed late recognize three or four of them in their past.
If your child or grandchild is autistic
You may have found out through them. This page is for that, and much of it applies to grandparents.
Caring for an aging parent
Hospitals, phone calls and paperwork are a sensory and social load. Put "I am autistic; please write things down" on the message cards and use it.
Finding others
Online groups for late-diagnosed adults have many people in their sixties and seventies. The ones linked on People, on your terms are autistic-led.
Where to go next
If you just found out: The first 30 days. If you're looking back: The Rewind. If you're worn out: Autistic burnout. If you want something to do with your hands while you think: the calm games.
Where this comes from
- Stagg, S. & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7(1), 348–361. Interviews with adults diagnosed in their fifties.
- Moseley, R., Druce, T. & Turner-Cobb, J. (2021). Autism research is "all about the blokes and the kids": autistic women breaking the silence on menopause. British Journal of Health Psychology, 26(3), 709–726.
- Hand, B. et al. (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism, 24(3), 755–764.
- Grove, R. et al. (2018). Special interests and subjective wellbeing in autistic adults. Autism Research, 11(5), 766–775.
- Asperger's disorder entered the DSM-IV in 1994 and was folded into Autism Spectrum Disorder in the DSM-5 in 2013. Medicare coverage of diagnostic psychological testing: Medicare Part B, when ordered as medically necessary.
Information, not medical or legal advice.