Book Review: Start Here

Start Here: a guide for parents of autistic kids, is a booklet available for sale or for free online from the Autistic Self Advocacy Network (ASAN), which is a group of adult autistics and parents of autistic people that got together to educate and advocate for the rights of autistic people.  The book is what it says on the tin: a starting place for parents who've gotten the news their kid is or may be autistic, and are sitting back and going "uhhh, now what..?"  

Like many publications from ASAN, this is written in an easy-to-read style.  Complicated or specialized words are defined.  Important concepts are defined and repeated regularly to ensure understanding.  The writers don't shirk from pointing out the racism and sexism in the system, in addition to the prejudice against disabled people you'd expect from such a book.  

In total, the book is 52 pages long, which is somewhere between a book and a pamphlet, I suppose.  The resource list begins on page 42, though, so you're really only reading about 40 pages.  I agreed with almost everything mentioned in the book, which was a nice change from some of my previous reads.  

Topics covered include: what autism actually is, communication differences, listening to autistic advocates, defining disability, presuming competence, choosing services, and schooling options.  It's all done in pretty broad brush strokes, and with the assumption that the parents in question live in the US.  (This isn't unreasonable, since ASAN mainly operates in the US.) 

My only disagreement with the publication was its section on vaccines.  I'm afraid the subject is a great deal more complicated than this book makes it.  While the overall message isn't... entirely wrong, it's not accurate to say Dr. Wakefield put out a study that said the MMR vaccine causes autism.  He put out a set of case studies, or stories of children he was treating, that suggested the MMR vaccine might be related to their symptoms, including autism.  Case studies are a basis for further research, not a means of determining cause and effect.  By putting out the study, he was simply saying "hey, someone should maybe look into this, because here's what happened with these people."  At no point in that study did he say, "vaccines cause autism" the way people seem to insist.

Also, vaccines are not always 100% safe, and in rare cases, can have side effects.  Even lifelong ones.  Pretending otherwise is absurd, since the VAERS exists to help track these.  I found it kind of unfair that the publication didn't even bother to mention Dr. Wakefield's doctorate.  I suspect this was done to give as little legitimacy as possible to the antivax movement, which some consider him a part of.  Still, it sits poorly with me to continue tarring an innocent man that way.  

Beyond that disappointment, this is a broadly useful resource that I feel fulfills the need it sets out to address.  

Read This Book If

You're a parent of an autistic child, especially a newly-diagnosed one.  More seasoned parents might still be able to use this as a refresher, but overall it's a quite targeted publication.  It's a short read, which is appropriate for an overwhelmed parent, but it covers most relevant subjects in broad terms.  A list of resources is included at the end for further (much needed) reading.