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Knowing Why: Adult-Diagnosed Autistic People on Life and Autism
What happens when you make it to adulthood before finding out you're autistic?
As A.J. Odasso writes in this anthology: "You spend a lot of time wondering what's wrong without ever knowing why."
This anthology includes essays from a diverse group of adult-diagnosed autistic people. Our essays reflect the value of knowing why--why we are different from so many other people, why it can be so hard to do things others can take for granted, and why there is often such a mismatch between others' treatment of us and our own needs, skills, and experiences. Essay topics include recovering from burnout, exploring our passions and interests, and coping with sensory overload, especially in social situations.
If you know you're autistic, are beginning to wonder, share similarities with autistic people, or want to support an adult autistic friend or family member--or if you simply want to know why it's so important that autistic adults know we're autistic--this book is for you.
As A.J. Odasso writes in this anthology: "You spend a lot of time wondering what's wrong without ever knowing why."
This anthology includes essays from a diverse group of adult-diagnosed autistic people. Our essays reflect the value of knowing why--why we are different from so many other people, why it can be so hard to do things others can take for granted, and why there is often such a mismatch between others' treatment of us and our own needs, skills, and experiences. Essay topics include recovering from burnout, exploring our passions and interests, and coping with sensory overload, especially in social situations.
If you know you're autistic, are beginning to wonder, share similarities with autistic people, or want to support an adult autistic friend or family member--or if you simply want to know why it's so important that autistic adults know we're autistic--this book is for you.
155 pages, Kindle Edition
Published October 17, 2018
96 people are currently reading
1068 people want to read
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Displaying 1 - 30 of 33 reviews
February 3, 2019
Disclosure: I received a free e-copy of this book from the editor for the purposes of writing an interview with them. Reviewing the book wasn't explicitly a part of that agreement, but I'm doing it now just because I like the book a lot and feel like doing so.
For people who are relatively new to the topic of adult autism - for adults who were just diagnosed, say, or who are considering diagnosis or self-diagnosing, or for the family and friends who want to understand them better - this book is an incredibly valuable resource. I can't recommend it highly enough. It shares basic information and personal experiences on topics ranging from family dynamics to burnout to accommodations at work to dealing with doctors in a well-written, compelling, and accessible way. There is also a list of resources for further reading at the end.
For people who have been in the autism self-advocacy community for a long time, there will be a lot in the book that rehashes topics they already know about. I would still recommend the book to those people anyway - it's useful to have all the information in one place, as a resource that you can refer people to or even physically hand to them. And even for an experienced person some of the essays may have new perspectives, particularly Morénike Giwa Onaiwu and Samantha Hack's contrasting pieces on their intersectional experience, and Andi C. Buchanan's nuanced essay on autistic relationships to technology.
For people who are relatively new to the topic of adult autism - for adults who were just diagnosed, say, or who are considering diagnosis or self-diagnosing, or for the family and friends who want to understand them better - this book is an incredibly valuable resource. I can't recommend it highly enough. It shares basic information and personal experiences on topics ranging from family dynamics to burnout to accommodations at work to dealing with doctors in a well-written, compelling, and accessible way. There is also a list of resources for further reading at the end.
For people who have been in the autism self-advocacy community for a long time, there will be a lot in the book that rehashes topics they already know about. I would still recommend the book to those people anyway - it's useful to have all the information in one place, as a resource that you can refer people to or even physically hand to them. And even for an experienced person some of the essays may have new perspectives, particularly Morénike Giwa Onaiwu and Samantha Hack's contrasting pieces on their intersectional experience, and Andi C. Buchanan's nuanced essay on autistic relationships to technology.
January 15, 2020
This is such a validating book! The essays on "All of Me" and "Autistic Navigation of Chronic Illness" especially spoke to me. I had ordered this book from the library but I will definitely be purchasing my own copy to loan out and share with friends and family. Highly recommend for anyone, autistic or otherwise.
December 10, 2018
Yes, a must-read
Even as an avid reader about autism and of autistic perspectives, I learned so much about the diversity of late-diagnosed autistic experiences from this collection. A must-read, as well as an engaging read.
Even as an avid reader about autism and of autistic perspectives, I learned so much about the diversity of late-diagnosed autistic experiences from this collection. A must-read, as well as an engaging read.
January 3, 2019
I'm struggling to put my enthusiasm into words!
There were so many "AHA! YES! THIS!" moments reading this anthology. I really appreciate the plurality of perspectives and subjects broached.
Every single piece was interesting, and most of them resonated with me immensely.
I was happy to read pieces from activists whose excellent work I've followed for some time (Amythest Schaber, Morénike Gina Onaiwu), and really thrilled as well to discover other writers (Samantha Hack, A. J. Odasso, ...)
I felt seen, I was very moved and encouraged by it all.
There were so many "AHA! YES! THIS!" moments reading this anthology. I really appreciate the plurality of perspectives and subjects broached.
Every single piece was interesting, and most of them resonated with me immensely.
I was happy to read pieces from activists whose excellent work I've followed for some time (Amythest Schaber, Morénike Gina Onaiwu), and really thrilled as well to discover other writers (Samantha Hack, A. J. Odasso, ...)
I felt seen, I was very moved and encouraged by it all.
May 25, 2021
This was such a lifegiving book for me. While not every authors contribution resonated with me (nor should they!), it seemed like there was at least a part of each one where I could say "oh yeah I get that." Being able to find some common ground, or common experiences, was refreshing, and helped me feel less alone.
August 14, 2020
Life changing for me. A must read for everyone.
February 19, 2021
Good for getting a view into different people's lives. Not that great or memorable as essays.
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January 29, 2024Definitely a worthwhile and thought-provoking read. It's given me some food for thought about the prospect of pursuing my own diagnosis. As the introduction outlined, not all of the experiences detailed here needed to resonate with my own experience for me to find the read informative--but also a lot of them did. I particularly found Amythest Schaber's and Erin Human's essays relatable--sometimes eerily so--in light of the job-related burnout and ongoing health issues I've been experiencing over the past few years. (Schaber doesn't directly name POTS and Ehlers-Danlos among the conditions she experiences, but... the descriptions of trouble with temperature regulation, joint hypermobility, and chronic fatigue are familiar.) Would recommend to readers looking to gain a wider perspective on the autistic community in their own words.
July 22, 2022
This is a fabulous introduction to the range of experiences, limitations and capabilities of people with autism, in particular people diagnosed with autism as adults. The stories are concise, but filled with images of what it is like to be autistic from various perspectives. It is amazing that such a complicated condition can be captured this well in such a brief volume.
February 7, 2022
I picked up this book in my current never-ending quest to get to my own “why�, and so much of it resonated. It’s really well-written, a collection of stories—but this book is not just for those who are autistic or suspect they are autistic. The book explicitly states it is intended for anyone with any neurodiversity or who has ever felt outside the “norm� in terms of social behavior. And it lives up to that promise.
Through a series of short personal essays, the book touches on both what leads a person to suspect they are neurodiverse, what damage it can do when they’re undiagnosed as a child (or again, even just “othered� socially as a child), and some of the benefits and consequences of being told one is autistic.
I recommend it for anyone who has spent time wondering why the “me� inside them is so different from everyone they admire, or who has spent time masking their deepest self with someone way more functional in an allistic society and is searching for similar experiences to their own.
Through a series of short personal essays, the book touches on both what leads a person to suspect they are neurodiverse, what damage it can do when they’re undiagnosed as a child (or again, even just “othered� socially as a child), and some of the benefits and consequences of being told one is autistic.
I recommend it for anyone who has spent time wondering why the “me� inside them is so different from everyone they admire, or who has spent time masking their deepest self with someone way more functional in an allistic society and is searching for similar experiences to their own.
September 18, 2023
This one had a few more helpful insights than the FAQ book. The concept of deep focus as opposed to meditation (which I always felt was a stupid waste of time) was a helpful one. The idea of thinking through why something is helpful in one context and applying the principle to another context was interesting and a good idea. A lot of this boils down to try different things and see what works. The intersectionality chapter was unhelpful (as most intersectionality discussions are.) While being aware of what's going on around you for safety sake is important and noting what may have gone wrong in an interaction to try to avoid negative interactions is a good idea (though not one to obsess over), this sounded like a whole lot of mental energy spent on assuming the worst about everyone you meet.
May 24, 2024
Worst book on Neurodivergence.
It is a collection of stories that look very much alike, adding minimal value with every next story.
Felt more like a forum for people to come whine about everything and anything. We all need a space like that every now and then, but don’t call it a book. Because it’s not!
The Giwa Onaiwu character makes you feel taken advantage of, used to spill the dirt out of the bucket directly on your head. What’s the point of publishing these complaints? Each one of us can produce something similar every week.
0 value � consider giving your time to something else.
It is a collection of stories that look very much alike, adding minimal value with every next story.
Felt more like a forum for people to come whine about everything and anything. We all need a space like that every now and then, but don’t call it a book. Because it’s not!
The Giwa Onaiwu character makes you feel taken advantage of, used to spill the dirt out of the bucket directly on your head. What’s the point of publishing these complaints? Each one of us can produce something similar every week.
0 value � consider giving your time to something else.
April 8, 2021
A really great collection of autistic people writing in their own voices, many of which I could definitely recognize elements of in myself. If you were diagnosed as an adult, or have a friend or loved one who was, this book could definitely help you understand the bewildering diversity of autistic expression and help to counter some of the lingering stereotypes with a healthy dose of representative, if not exhaustive, realities.
April 2, 2019
Although it was shorter than I would've liked, I liked this anthology a lot, and I felt like it helped me understand more about how my traits and experiences make sense in context of the fact that I'm autistic.
August 27, 2020
Excellent essays on the different realities people on the spectrum experience daily. I appreciate it for ASD folks talking about their own experiences rather than a researcher discussing observed behaviors.
December 6, 2020
I related strongly to some of the things in these essays and listened intently to the other parts too. I laughed a little that there is a dog on the cover of the book.
December 18, 2022
TLDR: Incredibly helpful and amazingly reaffirming.
April 18, 2024
- "The best advice I can give comes only with time and practice: have the confidence to be yourself and let others learn who you are. Learn about yourself and what works and doesn't work for you. But also take a few chances and try some new things because you will still learn something from the experience no matter what. It is okay to accept the good and the bad about yourself. It is okay to accept that there are times you will easily feel at your limit in certain situations and others where you can go further. Don't let fear stop you from trying. Just accept that things are different for you and try to work with yourself rather than against yourself."
- "If we are lucky, the only boundaries we face are those we impose on ourselves."
- "If we are lucky, the only boundaries we face are those we impose on ourselves."
October 21, 2024
Highly recommend this book to anyone who is neurodivergent or has a loved one who is neurodivergent. It is incredibly relatable and thought provoking. It really challenged me to reassess my view of myself and of neurodiversity. It also kinda encouraged confrontation of any ableism tendencies. I plan to pass this one along to a few people. Most literature around autism, ADHD, and neurodiversity in general is focused on children. The adult perspective was really nice to hear.
May 13, 2025
I found this book at the library while searching for books on autism. I enjoyed reading about the different experiences of the humans who wrote this book, and related to quite a lot of them. I felt validated in my own experiences. It had me thinking. I even cried a little. The way this book is structured makes it easy to read, and the ressources at the end are helpful.
July 20, 2022
This book is so good that I want a second volume. It did an excellent job of showing the diversity of experience and covering the various topics. I'd recommend it to anyone as an intro to adult-diagnosed Autism.
March 23, 2021
Most of the writing is really good. Not long, not diverse enough.
March 2, 2022
An fascinating collection of essay exploring the wide range of experiences of adults who were diagnosed as autistic.
March 9, 2022
Helpful for my own contemplation, but has left me with maybe more questions than answers?
Was also slightly bothered with typos, but not a huge deal given the structure of the book.
Was also slightly bothered with typos, but not a huge deal given the structure of the book.
October 23, 2022
Really very much appreciated this collection and found I resonate a lot with the different authors. Highly recommended.
December 13, 2022
A comforting and relatable read if you did not know you were autistic until you were an adult.
August 19, 2023
Lots of relatable content
August 12, 2024
Contains essays offering a variety of autistic perspectives. This book was both validating and informative for me, as an autistic woman who identifies with some, but not all, of the identities represented.
May 8, 2025
9 essays by 9 different people. Some I liked, some I didn’t, so I’ll rate it somewhere in the middle.
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