What I Mean When I Say I'm Autistic: Unpuzzling a Life on the Autism Spectrum

by Annie Kotowicz

I recently downloaded and read this book for no other reason than I saw it advertised for free as an e-book. I had no idea what to expect, and what a pleasant surprise it was!

The author, a late-diagnosed autistic woman, describes her personal experience of autism. She captures in concise prose feelings and predispositions that I have only been vaguely aware of in myself, and certainly wouldn't be able to articulate. That same skill is equally helpful in illuminating the subjective experiences that I do not share, but are common autistic presentations.

Highlights

This compact book feels like a collection of small gems. It really is a treasury of sparkling little insights into the world of autism, as perceived by the author.

The prologue consists of a highly relatable conversation between the author and her past self as a child about unspoken rules and unspoken reasons. These types of misinterpretations on both sides underlie so many autistic struggles, and I wish every teacher with autistic students could read an account like this one. The autistic need for precision and explicit rules is so often misinterpreted as rudeness or insubordination, and leads to so much completely unnecessary strife.

Carrying on, the author touches on a wide variety of autism-related topics. There is a lightness to this book that I enjoyed. Nothing is simplified or glossed over, but nothing is belaboured.

There is an insightful description of bullying and its relation to autism. The familiar narrative is that autistic people tend to be bullied due to perceived differences, yet in my experience that explanation tend to fall short for the sort of relational aggression that girls often face. The writer explains the role that the autistic tendency to either fail to perceive hierarchies of social power, or fail to participate in the power games that maintain these, plays in bullying.

The author has a knack for describing autistic brains (well, hers in particular), and introduces some ideas regarding theories of autism, including the Intense World Theory and the concept of monotropism. Most interesting to me, however, is Predictive Coding (Processing) Theory as it relates to autism, which I was not familiar with before reading this book. Specifically, this theory holds that autistic brains are not very good at generating the internal models used for prediction, which can inform sensory and social experiences and precipitates many forms of autistic distress. It is certainly a compelling theory.

And... there is another account of the herculean undertaking that many of us neurodiverse folks face when making phone calls. It is a slightly less scathing yet equally validating version of Pete Wharmby's rant in his book Untypical. This sort of particular aversion to phone calls really should, in my humble opinion, be added to the DSM as a diagnostic criterion for autism.

The "Quirks" chapter discusses characteristics commonly shared by autistic people that are not part of the formal diagnostic criteria, and is perhaps my favourite section of the book. I love Annie Kotowicz's breakdown of what eye contact can feel like to an autistic person. Personally, I find eye contact intense in a bothersome sort of way, though I am neither unable to make eye contact, nor scared of it. It's just that I can't do much else if I make eye contact, so you, my hypothetical conversation partner, either get eye contact or the ability to think from me, but not both, in a very similar fashion to what the author describes. Likewise, her discussion of gender norms, unconventional emotional access and processing, perception quirks like synesthesia, and autistic intertia are relatable and just plain fascinating.

In the "Optimizing" chapter, the author describes how she is creating a better life for herself, with simple but powerful strategies. This section contains one of the most succinct statements about a neurodiversity-affirming perspective that I have read, namely:

I prefer data over advice, because it gives me more autonomy to optimize my own life.

This book also contains some lovely examples of self-advocacy. Many are straightforward, non-burdensome requests that do not involve disclosing a diagnosis. More time is cited as one of the most powerful accommodations that can be imparted, as well as simple things such as a shift to written over verbal communication.

The Beauty of Autism

Early in the book, the author describes her reaction to her realization that she is autistic as being like discovering she is really "an elf or mermaid or fairy". Could there be a better statement on the beauty of autism?

Fittingly, for a writer who goes by the pen name of "Neurobeautiful", this book also ends with a chapter on the beauty of autistic brains, and a call for the grace of acceptance of self and others. Couldn't we all use more of this sort of beauty?