After my diagnosis I did what I always do with a new obsession. I went at it like a starving man at a buffet. Books, papers, forums, videos, all of it, at two in the morning, for weeks.
Some of it helped. Some of it made me angrier. A fair bit of it was written about autistic people for parents and clinicians, and reading yourself described as a list of deficits at fifty-something is a special kind of fun.
So, what should you read after a late autism diagnosis? My short answer: start with books by autistic adults about adult life. Then add history and the clinical stuff if you want it. Here's what I'd put on the pile, and the catch with each one, because every book has one.
Where should a late-diagnosed adult start?
Unmasking Autism, by Devon Price
If I could hand one book to someone who just found out at 45 or 55, it would be this one. Price is an autistic psychologist, and the whole book is about masking: the act most of us didn't even know we were performing until it collapsed. I've written about what masking is and how masking broke me. This book gave me a lot of the words.
Unmasking Autism
Devon Price
My take. The book I wish someone had handed me decades ago. Written by an autistic psychologist, about the mask most of us didn't know we were wearing.
Good to know. Very identity-affirming. Some clinicians push back on its take on self-diagnosis.
The catch: it's very identity-affirming, and some clinicians push back on its openness to self-diagnosis. I don't think that should stop you reading it. Know it has a point of view.
Look Me in the Eye, by John Elder Robison
A memoir by a guy who found out at 40, who builds things, who designed special-effects guitars for KISS and never fit any script anybody handed him. Reading it felt a bit like reading my own mail. It's also funny, which matters when the subject is fifty years of not knowing what's wrong with you.
Look Me in the Eye
John Elder Robison
My take. A guy who found out at 40, who builds things and never fit the script. Reading it felt a bit like reading my own mail.
Good to know. Uses the older 'Asperger's' label.
The catch: it uses the old "Asperger's" label. That was the language at the time. If the word bothers you, skim past it.
Books that explain the bigger picture
NeuroTribes, by Steve Silberman
The history of how autism got defined, misdefined and fought over. It reframes the whole thing as a different kind of mind that's always been around, rather than something that showed up in the last few decades. For me the history did something useful: it made the "why did nobody see it?" question less personal. Lots of people weren't seen. The system wasn't built to see us.
The catch: it's long, and it's history. You won't come out of it with a plan for Monday.
Is This Autism?, by Donna Henderson, Sarah Wayland and Jamell White
Written by clinicians about how autism shows up in adults who got missed, especially women and people who mask well. Useful if you want to understand why your assessment went the way it did, or if you're trying to explain yourself to a doctor or a partner.
The catch: it's partly written for clinicians, so some sections feel like eavesdropping on a professional training. Still worth it.
For the shame that shows up afterward
Nobody warned me about this part. Diagnosis came with relief, sure. It also came with grief, and anger, and a long replay of every time I'd been called difficult or too much. I wrote about that in grief and relief after a late diagnosis.
Self-Compassion, by Kristin Neff
Neff is the researcher who built the Self-Compassion Scale, and the book is about treating yourself the way you'd treat a friend who'd been through what you have. For someone who's spent decades calling himself an idiot in his own head, that's a radical idea.
Self-Compassion
Kristin Neff
My take. Shame fed my using and my blow-ups. This is the research-backed antidote. Sounds soft. It isn't.
Good to know. Some of it reads like a pep talk. Do the exercises anyway.
The catch: some of it reads like a pep talk. Do the exercises anyway. They work better than the prose. There's a French edition, S'aimer, if that's your language.
Books I'd read with care
The Reason I Jump, by Naoki Higashida, is hugely popular and was made into a documentary. Two problems for our purposes. It's about childhood non-speaking autism, not adult late diagnosis. And there's a real dispute over how it was written, tied to a communication method that major professional bodies have criticised. Read it knowing that, or skip it.
Thinking in Pictures, by Temple Grandin, is a classic first-person account. Practical, engineering-minded, a big deal when it came out. Some of her views have aged badly. I'd read it as history.
Partner guides from the "Asperger's" era. Some books written for spouses of autistic people center the non-autistic partner and treat the autistic one as a problem to be managed. If your partner wants something to read, look for newer books, and read them together if you can.
How to read about yourself without drowning
A bit of advice from someone who did it wrong:
Don't read six books in a week. I know. I'm saying it anyway. Your brain needs time to sort what's true for you from what's true for the author.
Read reviews from autistic readers before you buy. They'll tell you fast whether a book respects us.
And mix the reading with real people if you can. The National Autistic Society's after-diagnosis page has good, plain advice on the weeks after, and the Autistic Self Advocacy Network is run by autistic people. In Québec, the Fédération québécoise de l'autisme has a section for autistic adults. If you're still at the start of all this, I wrote about being diagnosed autistic in your 50s.