Uniquely Human

by Barry M. Prizant, PhD

This was the first autism book recommended to me at the time of Oranguette's diagnosis. It is both highly informative and deeply compassionate. Although the author himself is not autistic, this book features many voices from the autistic community.

I fervently wish this was required reading for any professional or support person who interacts with autistic people. Especially every single person we encountered at Institution 1. I have fantasized about sending them a bulk order from Amazon but, even in this reverie, I can't figure out how to make them read it. A zealous orangutan chasing psychiatric staff around with a pile of books does not sound like a plan that would achieve anything useful. But, an orangutan can still dream.

The information in this book is presented through a continuous series of anecdotes, and it conveys a rich and full understanding of autism. It is relevant to the full range of autism presentations.

In the first chapter of the book, the author highlights the centrality of dysregulation, both emotional and physiological, to autism. This is a seemingly small observation, but it is an essential understanding that is often missed. It sets the stage for one the main theme of the book: "Ask 'Why?'" (which is also the title of the first chapter).

Labels such as "noncompliant", "withholding", or "manipulative" are frequently applied to autistic individuals. I have often heard "uncooperative" and "controlling" in addition to those. I have my own set of adjectives to describe those sorts of labels: superficial, inaccurate, traumatizing (especially when they are applied to a person in crisis), and intellectually lazy.

The author delves beneath these harmful terms. He brings curiosity, humanity, and genuine interest to this detective work. He clearly conveys the unhelpfulness and harm done by attempts to eliminate so-called undesirable behaviours without understanding the purpose of them.

A Disability of Trust

One of the sections that resonated very deeply with me was the description of autism as a "disability of trust". The author writes:

Because of their neurological challenges, autistic people face tremendous obstacles of three kinds: trusting their body, trusting the world around them, and -- most challenging of all -- trusting other people.

He explains how that broken trust can result in attempts at control by the individual, and how therapy often tries to remove that control, fueling further anxiety, and thus compounding the problems. This neverending downward spiral is sadly very familiar, before we were able to break free of it.

Although this book does not discuss Pathological Demand Avoidance per se, I think there is a very natural tie-in to that set of ideas too.

In particular, the author's understanding of selective mutism in this context is a relief. He relates an anecdote where, instead of trying to force an autistic child to speak, the focus was instead put on building trust in her relationships, and encouraging alternate means of communication. This stands in stark contrast to abusive strategies such as withholding basic physical necessities in an attempt to coerce a child to speak, which is exactly what we encountered at Institution 1. We put a stop to it as soon as we found out, but the resultant damage took a very long time to undo. No, it did not work.

Other Highlights

This book is a treasure trove of insights both large and small. I'd like to highlight a few of my favourites here.

The chapter on Social Understanding contains a description of how an autistic person might perceive the environment as they enter an unfamiliar cafeteria, and the resulting bewilderment of not being able to immediately pick up on the rules. It certainly nails my experience of trying to navigate all the unfamiliar little situations that come up when one is out and about in the world, that (incomprehensibly, to me) do not seem to trouble most neurotypical people at all. In this example, the author describes my reality in exacting detail while making me feel seen and in no way belittled. It is quite lovely, thank you!

The author also provides an astute description of how some autistic people tend to absorb and experience strong emotions of others, without understanding why. Many years ago in our home, Mr. Orangutan coined a word for this: "antennaing", in the sense that I can be an antenna that picks up on his emotions without knowing why. Antennaing is often followed by an anxious series of "are you mad at me?" questions. (For completeness, I will note that Mr. Orangutan is a patient and even-tempered sort, and strong negative emotions on his part usually have more to do with things like hot water heaters than me. But I can never tell.)

Further along in the book, there is a discussion of the common but highly problematic prioritization of academic achievement and so-called inclusion over happiness (or even simply stress reduction) in autistic children. This is a topic that, in my opinion, needs a lot more illumination and consideration, especially for autistic kids who do well academically in spite of other struggles.

The book also touches on one of my favourite ideas even outside the context of neurodiversity; namely, interdependence over independence. As opposed to independence, where a person is supposedly able to do everything for themselves, interdependence means knowing how to obtain support from others. I think both of those definitions need elaboration. First of all, I think the notion that anyone is truly independent is a complete fallacy. And, secondly, an interdependent person also provides support to others where they can, in addition to receiving support. Interdependence might just look a bit different for a neuroatypical person, in that their disability shapes what sort of supports they require from others. I personally would prefer to live in a community of interdependent people of any sort of neurotype, rather than one in which everyone tries to be an island unto themselves.

Wisdom for Parents

Lastly, this book contains many words of wisdom for parents of autistic children. The description of "it-less" people, including professionals, is spot on. It has been particularly frustrating to hear a professional remark on Oranguette's cognitive inflexibility (which indeed can be remarkable) while simultaneously demonstrating their own complete lack of flexibility.

As a parent, I found myself thrust very suddenly into the role of advocate. It is not a role that comes naturally to me, and something that I have had to learn under extreme duress. I have not always been as effective or graceful as I would wish. This book provides some useful wisdom on that topic too.

Most importantly, the author reminds parents that they always have a choice. It is so easy to feel disempowered as a parent, especially when in crisis, as though our child's problems reflect a failure on our part rather than a genuine disability, and that we are obligated to follow whatever an authoritarian professional dictates. That is never the case.

This book was first published in 2015. I can only dream of they day when places like Institution 1 adopt the understandings laid out in this book. The sooner the better.