What I Mean When I Say I'm Autistic {Book review}

Having followed the Neurobeautiful Facebook page for some time, I was delighted to be offered the chance to review the author's book, What I Mean When I Say I'm Autistic*. Annie Kotowicz is an autistic author and advocate who was diagnosed at age 28. She began her blog at Neurobeautiful over six years ago, to help process her ongoing discoveries about autism and neurodiversity.

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As parent to an autistic child I quickly realised how important it is to listen to and learn from other autistic individuals. Although every child's life situation is of course different in some way (hence the word 'individual'!), there are nearly always many common experiences. Annie's book could be described as a bridge between autistic and neurotypical worlds, inviting readers to understand the trials, triumphs, and intricacies of life before and after an autism diagnosis. 

There are 12 chapters, plus an introduction and a great prologue that shines a light on how society is full of rules that are not implicitly taught but that children are expected to somehow learn. The headline titles topics covered in chapters are: Discovery, Puzzling, Sensitivity, Processing, Stimming, Relationships, Misunderstandings, Meltdowns, Quirks, Optimizing, Uplifting, and Beauty. Throughout the book interactions between autistic and non-autistic individuals are considered, and the neuroscience behind the diverse spectrum of autistic traits is explored. Annie skillfully weaves personal anecdotes with scientific insights, making complex concepts accessible to readers from all backgrounds.

In the Discovery chapter Annie explains how she began to understood herself after meeting like-minded individuals and she shares what happened for her in terms of diagnosis, whilst also touching on the validity of self-diagnosis. In the next chapter, Unpuzzling, Annie explores how it took more than simply reading the medical manuals criteria for autism to help her to see her own past in a new light. She mentions her high school experience, where she felt that "everyone perceived me as annoying and weird". She goes on to note that:

I was always pointing out everyone’s mistakes, including any words that teachers spelt wrong on the whiteboard.

I was always clueless about social drama. There would be cliques, and rumours, and classmates mad at one another, for some reason – and I would never pick up on any of it.

I was always raising my hand and asking a ton of questions. Many times, teachers would say, we went over this already! But there was usually some part that I still didn’t understand.

In a section headed 'Disability or Superpower?' Annie writes about how she sees autism as a superpower, a disability, or a combination of both, depending on the situation. I particularly loved how she descibes autism for her as "like being a mermaid who can navigate vast waters, but sometimes finds herself stuck on dry land" because we often call Sasha our little mermaid, who taught herself how to swim. I also love the phrase that Annie uses to sum up this chapter, her favourite way to think of autism, "I miss what others catch, and I catch what others miss." 

The subline on the Sensitivity chapter is 'How it feels to feel so much' and this chapter covers sensory challenges, then chapter four is all about Processing, including audio and video information but also transitions. This interesting insight is shared:

Processing speed is different from processing ability. Sometimes, when a person realises I have poor processing speed, they automatically assume I have poor processing ability. Their tone becomes more lilting, their vocabulary more childlike, and their expressions more performative, as if they think any of that will make it easier for me to understand them. It’s like they’ve never considered the possibility that a person can be both smart and slow.

I can’t handle a barrage of facts, descending haphazardly into my mind like Tetris. I freeze up, game over. However, I can handle extremely complex information if you give it to me one bite at a time, with pauses in between to digest each new fact.

The chapter about relationships, both romantic and other kinds of social interactions is very interesting and I loved Annie's take on the fact that the internet is part of the real world and we should also embrace friendships found there - so true!

This book doesn't shy away from the challenges faced by autistic individuals, but it also celebrates the beauty and joy of being autistic. The book is described as a journey to self-discovery, offering information that is eye-opening, heartwarming, and intimate. The celebratory tone is highlighted in comments like "celebration is really at the heart of this book."

I highly recommend What I Mean When I Say I'm Autistic for anyone who would like to learn more about autism and help to build a more compassionate society. This book is a valuable resource for those within the autism community and beyond.There are numerous endorsements praising the book's impact on readers' self-discovery and understanding of autism, both on Annie's website and on book sites. One reviewer commented that this book was "the clearest account I've ever read of what it feels like to be autistic." This clarity, combined with anecdotes and colorful analogies, brings the author's story to life, making it accessible to a wide audience. What I Mean When I Say I'm Autistic is available via Amazon.*

Our book, PDA in the Family, is out now! We wanted to help other people understand more about Pathological Demand Avoidance and the book was one way of doing that. It's an account of our family life since the day we were told our younger daughter is autistic. It covers diagnosis, the subsequent lightbulb moment we had when we heard about PDA, education, relationships and more.