What I Mean When I Say I’m Autistic: Unpuzzling a Life on the Autism Spectrum is part memoir, part survival guide, and all relatable. This brand new book by well-known Autistic author and advocate, Annie Kotowicz, better known by the name of her social media presence, “Neurobeautiful,” is in my view one of the very best examples of Autistic representation yet published.
Let me begin this review by appreciating the title of the book, which reads to me as a bit of a clap-back at the puzzle piece as an imposed symbol of Autism, a symbol not of our own choosing and one which offends a great many of us. “Unpuzzling” is the one word that made me want to read this book. That word made me reflect upon how it is that we, as Autistic people, need to make sense of our minds, our way of being, and how to navigate in this world, all while discarding the inaccurate and ableist concepts and stereotypes that seem to define us in the minds of allistic (non-autistic) others.
Doing away with the puzzle piece symbol and all that it stands for, was an important part of Annie’s process. But I didn’t know that just by looking at the cover. Yes, the title is smart, humorous, and just a little cheeky. I just knew this was going to be a great read.
IMAGE DESCRIPTION: Author Annie Kotowicz. A smiling brunette woman with glasses, wearing black.
Annie Kotowicz is passionate about identity and community. Her introduction explains why a book such as this one is important. As a late-diagnosed Autistic woman, Annie’s experience is shared by millions of people who did not have the information that would have saved them years (or decades) of struggle and suffering— information about their neurotype and identity; knowledge of a growing community that, when accessed, could provide one with a sense of belonging; tools for coping, strategizing, healing trauma, and self-advocating.
The not-knowing was painful for Annie, as it was for many of us who were not diagnosed as children and who did not come to the awareness that we were Autistic until we were adults. The process of hearing or realizing we were Autistic and learning ableist and harmful things about who we were assumed to be proved to be traumatizing. A period of unlearning had to happen in order to arrive at a much more positive, healthy, and integrated self-awareness.
Writing this book was an incredible act of empathy. What I Mean When I Say I’m Autistic exists to help ease that journey of self-discovery and integration. By sharing her journey– with much humor, insight, humility, and courage– Annie Kotowicz has created a map for others. I found myself recognizing many locations in the landscape and caught myself wishing that this resource had existed ten, fifteen, or twenty years ago.
“There are a bunch of rules that no one will ever tell
you. They’re called unspoken rules.”
In her Prologue, Annie describes a delightful, yet poignant, conversation between her adult self and her inner child. The unspoken rules, the neurotypical norms, of our culture are frustrating and confusing, dizzying and unfair. One day, adult Annie says, you will understand what makes you different.
There is a saying in the Autistic community: “different, not disordered.” This is not to dismiss the reality of disability as experienced by Autistics. It is, rather, a succinct way to deconstruct the concepts that frame Autistic beingness as a long list of deficits. In her first chapter, Annie describes finding herself by way of finding and being found by others: neurokin recognizing one another. That “Autistic” is an identity, a culture, and a community becomes abundantly clear as she writes about the signs and “tells” of Autism when we observe ourselves and one another. That we are right to celebrate the qualities and traits that mark us as different just as we are right to acknowledge our challenges and advocate for the provision of supports and accommodations.
I deeply appreciated and respected Annie’s honest telling of how she came to understand herself and her neurology. There is an admirable authenticity in how that understanding evolved and matured. Language and concepts are expressed, contemporary to the stage Annie was in when she was processing them. The language used progresses to become ever more affirming. We grow and learn and integrate along with the author.
“How It Feels to Feel So Much“
It may not be the wisest thing for a reviewer to do, but I am going to share that chapter three was my favorite part of the book. It addresses sensory experience. Being synesthetic and primarily a sensory seeker, I delighted in our senses being recognized as a spectrum of intensities; hypo- to hyper-. This chapter discusses Sensory Beauty and Pain, Sensory Value, Sensory Discomfort, Sensory Protection, and Sensory Empathy. A favorite passage describes the pleasure and value of tree gazing– a favorite past-time of mine– and I burst out in loud, impulsive laughter because of kinship and shared sensory joy while visually stimming.
That we are, as Autistic people, beings of intense experiential extremity, is something that is acknowledged in a cognitive way by most other people. But, what that intensity is like to live in is not well understood– nor generally appreciated by — Allistic (non-Autistic) folks. We are all too often portrayed as or assumed to be numb, unfeeling, uncaring, and lacking empathy and compassion. This chapter tells the world and reminds us that we live– quite a lot of the time– in awe, with profound caring, and in a swoon.
Annie breaks down the basics of our lived sensory experience, intelligently and well. She also shares her own sensory profile, historical and current, which makes the exploration and explanation of Autistic senses immediately, intimately, and infinitely relatable.
The chapters on Processing and Stimming read like an entertaining user’s manual. These are, quite simply, some of the best sentences ever committed to paper. Expressing and explaining how our brains do what they do, why they do that way, how our bodies express our emotions and emotional/psychological states, and why… With more insightful and often humorous inside-out testimony with which to reflect upon one’s own workings.
These are the very things I needed, desperately, when I was first attempting to understand myself and what it meant to be Autistic. It was really only by getting to know my peers in the community and hearing their testimonials of their lived experience that I learned to map my own nuances, figure out my workarounds for the ways in which I was challenged or limited, arrive at a place of celebration instead of fear and resentment.
Celebration is really at the heart of this book. Celebration of Autistic beingness, of Autistic joy, and of coming home to the authentic self. Towards the end of the book, Annie really breaks down a whole list of what she experiences and observes as her own strengths and weaknesses, triumphs and challenges. She carved out the “safe space” for herself in which she could gaze, unflinchingly, at her whole, “NeuroBeautiful” self. The list is delightful, insightful, brave, honest, and opens a door for others to step through, in their own exploration of self, their own searching for holistic cohesion.
Writing a book looks like a one-way communication. It really isn’t. It is a conversation, a relationship. A book can manifest a “safe space” of unity and empathy… and that is just what this book does. I felt safe, seen, heard, understood, valued, and affirmed, reading each word, each chapter.
I also felt confident about my intuition that allistic others, reading this book, would understand more, develop more empathy and compassion, and be more prepared to provide “safe spaces” with and for their Autistic peers, friends, and family members.
To be able to reach across the neuro-gap is no small feat. Writing that will reach the minds and hearts of every neurotype is rare. Annie Kotowicz accomplishes this with seamless grace. She provides us all— be we Autistic or Allistic— with such an intelligent, heartfelt, and valuable guide with What I Mean When I Say I’m Autistic.
Make this book a must-read.
Unless you are demand avoidant. In that case, may this book find its way into your hyper-focus phase so that you may absorb it in its own right timing.
What I Mean When I Say I’m Autistic: Unpuzzling a Life On The Autism Spectrum by Annie Kotowicz is available for purchase in these online locations: Amazon, Apple Books, Barnes and Noble, Kobo, and Scribd.