Friday, July 22, 2016

Book Review: A Full Life With Autism

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence by Chantal Sicile-Kira and Jeremy Sicile-Kira, with a foreword by Temple Grandin

Somewhat deceivingly named, this book by Chantal Sicile-Kira (the mother) and Jeremy Sicile-Kira (the autistic son) mainly covers the transition from high school to college to employment.  While this is a vastly important and under-covered subject in autism, it hardly spans the entire life of a person on the spectrum.  As I understand it, authors rarely get to choose the final title of their books, though.  I grabbed this book off the library shelf after a mixed reaction to the title.  However, the front cover, noting proudly Temple Grandin's foreword, assured me a little more of the book's contents. 

The book is a deceptively thin-looking paperback, but in reality contains over 200 pages of direct, thoughtful, helpful advice, options, and things to consider when dealing with subjects such as housing, education, relationships, supports/services, and even sex ed.  I found the lattermost somewhat discomfiting, but I imagine that is often the case.  I do agree with the authors' assessment, though: Squeamish as the topic may be, it is vastly important that it be discussed and taught in detail.  No matter how well or how poorly a person on the spectrum blends with larger society, some things aren't or can't be taught in school.

The contents of the book are divided into chapters, with Chantal giving the majority of the information in plain text, and notes, thoughts, and information from Jeremy in italicized font.  This was more or less in keeping with the philosophy of the authors, which was, as much as possible, to let the autistic person determine their own fate, make their own choices, and plan for the future.  This is immensely important, and both the authors and psychologists elsewhere stress that importance.  It's a major predictor to how fulfilled and happy any given person is, on and off the spectrum. 

That level of choice can be a tricky conundrum when the person in question requires 24 hour/day care, or has aggressive tendencies that can be a danger to everyone, or is a "runner"- ie: they tend run off in a randomly chosen direction at any given time.  While the authors obviously came at the problems from Jeremy's perspective first, they made great efforts to include other situations in their writing as well.  They made a point to include short but useful perspectives from other people in other situations on the spectrum.  So there were some thoughts applicable to me, a fairly well-blending autistic person, as well as the other ends of the spectrum. 

For reference, Jeremy himself requires assistance to communicate.  I didn't get the entire story from reading the book once, but it sounds like verbal communication is immensely difficult for him due to his body not responding properly or at all when his brain tells it to.  He uses several assisted communication devices, anything from a pad of paper to a LightWriter to a smart device to type or write what he wants to say.  But he can't always even use those, because again, body not responding properly to brain.  So he is certainly not another "almost neurotypical story" like myself.  Between his words and his mother's words, though, I gather that they think it doesn't matter how well or how poorly you blend, you are going to have challenges.  They pointedly remark that those autistics that blend better can even have it harder, because everyone automatically expects you to be neurotypical and your act is almost perfect, but then it's not and people draw away from you. 

Overall I think this is an excellent guidebook to the transition from high school to employment.  It is not an itemized set of directions, but rather a series of information and questions to ask yourself and your parents/child with autism.  At every step of the process, Chantal and Jeremy have useful things to say and guidance to offer.  Chantal is direct and to the point with her information, and Jeremy's voice comes across as plainspoken, but honest.  Some of their information is most relevant to California, where they live, but most of it is relevant nationwide (and at broadest form, worldwide).

If I have one gripe about this book, it's that it's not the most inclusive for the gender spectrum.  I identify as agender, and as such "they" is the most applicable pronoun.  This book defaults to he/she, mainly he.  They address that and other inclusivity issues in the introduction, and really, complaining about it is like complaining that the new car you received needs a car wash.  If the book gets a second edition, then perhaps they could have a section for LGBTQ+ issues and more inclusive wording, but frankly it's an oversight I'm willing to forgive.

Final word: definitely consult this book if you are transitioning or your child is transitioning.  It's chock-full of good information. 

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