Book Review: Autism Encyclopedia

Autism Encyclopedia: The Complete Guide to Autism Spectrum Disorders, edited by E. Amanda Boutot and Matt Tincani.  

While I do, in general, approve of the concept of a complete manual or handbook to any given subject, it saddens me a lot when I find one that advertises itself as "complete" yet has a clear and defining bias.  This particular book has such a strong bias that I can't decide whether it was accidental because the authors and editors literally had no perspective beyond their own, or whether it was purposeful and they told themselves it was "for the greater good," or somesuch nonsense.

In any case: this book should instead be called "Autism and ABA: a Parent's Encyclopedia."  (ABA: Applied Behavioral Analysis, one of the staple therapies for autism.)  Unlike most encyclopedias, it is organized by category rather than from A-Z, which I suppose is also an argument for it not being called an encyclopedia.  Their reasoning for calling it that, aside from making it seem more authoritative is probably because of the length of the sections.  On average, each section is about 5 pages long, and contains a description of that particular subcategory along with sections at the end defining terms, cross referencing other sections, and listing resources on that topic. 

In retrospect, the whole thing really strikes me as more like a textbook than an encyclopedia.  I used to read my parents' World Book encyclopedias when they were new, before we had the Internet.  They were much more fun reading, as I recall...  or at least they had pictures to go with their walls of text.  The fact that each section is neatly titled, subtitled, and divided up for readability is probably the only reason I made it through the entire book.

Some gripes: early on in the book, autism is described, word for word, as "the brain doesn't develop as it should" as if everything that isn't exactly the same/neurotypical is broken.  I think that's hilariously misguided, considering that even if your brain developed normally and looks neurotypical on a scan, it can still suffer from things like depression, anxiety, personality disorders, etc.  That's not just me cherry-picking an irritation here, the entire book is sprinkled through with medical comparisons, as if autism was a disease to be cured.

Listen, people: I am not a disease.  I am a person.  With challenges and special needs and such, sure.  But I am not broken, thank you.  I do recognize that's a difficult statement for parents with newly diagnosed children to swallow, and it would be much easier if they could simply feed their child a pill, have them be cured, and go back to a normal life with normal expectations and fewer complications.  I get that.  But please don't let your expectations get in the way of helping your child have the best life they can.  Some people talk about how having kids lets them experience the world anew, in ways they hadn't expected.  If your kid is autistic, you will absolutely get that experience, and on a much deeper level than with a neurotypical kid.  Because we have to work harder and need more help with each step of development, these types of experiences will not pass you by unless you pointedly ignore them. 

A point of amusement: in the section talking about how people are diagnosed with autism, they refer to the experience as "a battery of tests."  This is both standard nomenclature and highly amusing if taken literally, as though being literally assaulted with test booklets.  My experience with psychological testing could easily be describe as "mentally and emotionally painful."  So it fit, and made me chuckle aloud in the coffee shop I was in when I read that section.

My final note on the book is that if you really want a decent primer on ABA, techniques to try at home, terms, philosophy, etc, this is your book.  It is poorly named, but it seems to be a very good start for educating yourself on ABA at home, and will help you work in tandem with trained and certified ABA professionals and manage things at home.  

I have a complicated relationship with ABA.  Thus far, much of the short term research points towards it having a positive impact on the child's ability to attend school.  It teaches skills and reduces abnormal behaviors.  Effectively, the purpose of ABA is to train your child to act more normally and meet developmental criteria.  Long term studies, though, are beginning to show that is has little positive impact on the long term life of a person. That worries me, since I've read a number of books and met a number of people who effectively say "ABA is the one true therapy."  

I can't personally speak to the matter, since the only behavioral training I had was whatever my parents cobbled together to raise me.  Neither are trained in psychology.  But I worked in an ABA center for a time, and... behaviorism, the school of psychology upon which ABA is based, worries me.  It began on the basis that what the individual thought or felt was irrelevant, because you could train an animal or a person in the same way and get the same results regardless.  Current schools of thought in behaviorism aren't quite so automatically dehumanizing, but ABA does still revolve around "normalizing" people on the autism spectrum.  

In some instances, this is good: teaching eye contact, how to answer questions, engagement with peers, etc, is a wise idea.  The problem is that in some cases, practicioners will literally try to erase any outward manifestations of autism.  This would seem similarly wise, since neurotypical people tend to shy away from people that rock, spin, flap their hands, mutter to themselves, etc.  "Stimming" behaviors, as they're called, are developed for regulation purposes, or in plainspeak: so we can feel better while the situation is making us feel worse.  They serve a purpose.  Take them away, and you have a person without any ways to feel better, which leads directly to very bad behavior.  

Read This Book If

You're intending to start or are already using ABA therapy for your child on the spectrum.  This book is neither an encyclopedia (it's more of a textbook) nor complete in regards to autism, but rather a guidebook to ABA with some side information about autism.  It is readable and divided into convenient sections so you needn't read the whole thing at once, and the language is mostly approachable to laypeople.  Beyond those circumstances, I cannot recommend this book.