Friday, February 8, 2019

Book Review: Autism Adulthood

Autism Adulthood: Strategies and Insights for a Fulfilling Life, by Susan Senator, is a remarkably thoughtful parent-written book about how to create a meaningful life for an adult autistic person.  Especially, notably, a low- or non-verbal autistic person.

The book manages to handle this rather tricky subject with a surprising amount of grace and humanity.  I'm afraid, as an autistic advocate, that I've been rather put off by the way autism parents talk about their grown children.  One group in particular (whose name I won't mention in hopes of being more adult and graceful than several of them put together) was all but hostile to me when I attended one of their meetings.  This was before I cut and dyed my hair, too, so I didn't exactly scream "young autistic adult in defiance of institutionalization and social norms."

Anyway, the author of this book seems to have an understanding of neurodiveristy and avoids demeaning terms like "adult child" and instead simply refers to her autistic son and her friends' sons as "our guys" or by their names.  It's not exactly descriptive, but it's a lot more humanizing than literally any other vocabulary I've seen anywhere else.  Her story mainly involves the stories of sons, rather than daughters, but I think much of the information in the book applies to both sexes.

The topics covered by the book include housing options, employment, risk management, choosing caregivers, financial planning, and the dreaded question, "what happens when I die?"  Rather than the author simply opining on each subject, she went out of her way to interview and discuss these subjects with dozens of parents, professionals, caregivers, and even siblings of autistic adults.

The writing style of the book was clear and easy for me to understand.  It was both approachable and friendly, neither overbearing nor over-specific.  It provides a framework for all the subjects it touches, giving you places to start and pointers in broad brush strokes.  Because each state in the US has different laws around Medicaid and housing, this is actually a good thing.  It leads you to the right kinds of questions to ask.

I also really appreciated that this book took the time to address the issue of siblings.  Siblings can be one of the greatest gifts to autistic people.  But there's certain struggles and frustrations involved in being a sibling to an autistic person, and these things are sometimes overlooked in the work of supporting the autistic person.  The fact that this book offers resources to help support siblings as well as the parents is invaluable, and I very much hope that these resources become more widespread.

On a personal note, two things.  First, I appreciated chapter 6: "The Struggles of Apparently High-Functioning Autistic Adults."  It makes very valid points about the situations of people like me.  To those, I'd add one more thing.  For people like her son Nat, there's hopefully a village to help surround and support him.  For someone like me?  Not so much.  It's not that my parents didn't love me.  It's that they expected me to handle my own issues.  And I did, but I suffered for the lack of support.  If all goes well, Nat will never lack for people to ask for help the way I did.

Second, the title of chapter 8 is, "Am I My Brother's Keeper?"  This is, of course, a reference to the Biblical story of Cain and Abel.  After Cain killed Abel in jealous rage, God asked Cain where his brother was.  His flippant response was the quoted question.  Many years later, I read the true answer to that question in a work of science fiction.  I wanted to include it here.

Am I my brother's keeper?

You are his keeper, as he is yours.


Read This Book If

You're a parent, guardian, or caregiver of an autistic person, especially one who's pretty clearly not following the "standard" academic track, is low- or non-verbal, or is already an adult and is having a hard time adjusting to "adult life."  Even extended family could make use of this book, if only to understand what the parent, guardian, or caregiver is going through, and how to help.

This has become the first book I will point to if autism parents ask me, "How do I plan for my child's future?"  If I was non-verbal or low-verbal, this is the book I'd want my parents to read.  It's that good.  Please read it.  

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