Words Matter

At our house we have been talking about autism, so I have been perusing books aimed at older children with autism. I even put one on my wish list on Amazon, and my mother kindly ordered it for me. It is called The Survival Guide for Kids with Autism Spectrum Disorders (and Their Parents) [emphasis mine] by Elizabeth Verdick and Elizabeth Reeve, M.D. I selected this without a lot of thought and had left it on my wish list, thinking that I would evaluate it further before ordering it. Enter my mom. Anyway, once I had the book, I left it on the nightstand in Singularity's room with the idea, still without any deeper thought, that he might pick it up and read it on his own. 

(This a technique I sometimes use when I want Singularity to learn about something in a kind of organic way, without feeling that it has been pushed on him. Case in point: Robie Harris's book It's So Amazing: A Book about Eggs, Sperm, Birth, Babies, and Families. I highly recommend this book, incidentally.) 

Anyway, back to the "survival guide" at hand.

As the days went on, I became increasingly disturbed by the book's cover, and finally I removed it from Singularity's room. I don't think that it ever attracted his attention. I hope that it never did. 

I object to the diagnostic term "Autism Spectrum Disorders". It pathologizes a set of traits that I merely view as differences. It implies that an autistic life is something to be survived, not something to be cherished and enjoyed.

I do not want to give my treasured child the message that there is something wrong with him. There is nothing wrong with him. 

He is his own perfect self.

What would I prefer to see on the cover of that book? The best term I could think of is "Autism Spectrum Differences", and this is probably what I will start using when I talk with Singularity about his autism. Talking about differences doesn't make value judgments about which condition is good/right and which is bad/wrong. 

I do think that there is a place for guides for young autistic people with the goal of helping them navigate a world that is not organized in their favor. And I think that they should be written by or with autistic people. "Nothing about us without us." That's the rallying cry of the Autistic Self Advocacy Network. 

I also think that autism parents need to be able to write about their experiences (here I am writing this blog) and to read memoirs, blogs and guides written by autism parents who have gone before them. But they need to be clear that their writing is from the parent's perspective, and that their audience is other parents. 

In addition, there is a place for professionals working with autistic people (speech therapists, occupational therapists, educators, researchers, neuroscientists, etc.) to write about their methods and research findings.  However, these writers, their editors, and their publishers should be absolutely clear that their audience is not autistic children who are coming to terms with the ways autism affects their lives, as is the case with Verdick and Reeve. And these professionals must become more sensitive to their ableist language.

The book in question, as you can see from its cover (above), is most definitely aimed at a youth audience. However, the authors are both autism parents, and one is also a psychiatrist who works with autistic people. Much of the content of the book has to do with social thinking, a la Michelle Garcia Winner. However, MGW is very clear about the intended audience of her different materials. It is clear that the Superflex books are directed at children, as it is that other books available on her website, such as Brilliant Cognitive Behavioral Therapy or Thinking About You, Thinking About Me: Teaching Perspective Taking..., are oriented toward professionals and parents.

It is extremely important that parents and professionals who work with autistic people listen to the voices of actual autistic people, who can tell us when we have it all wrong.

As I began writing this diatribe, tirade (interestingly, a partial anagram of diatribe), rant, I recalled a powerful image I had seen on the blog of Lydia Brown, Autistic Hoya, which I will reproduce here for your viewing pleasure:

Lydia's caption reads as follows:

Image description: A young Asian female-presenting person with short straight black hair, small square-ish glasses with black frames, a blue tee-shirt, black pants and black close-toed shoes lies on her side between two brown book shelves with a number of books of different sizes and colors on them. She is smiling upwards at the camera but also flipping it off with both middle fingers. She is lying behind 38 books lined up in rows (of 9, 8, 9, 8 and 4, from back to front) books about autism. The titles of the books are difficult to read, but they include: The Age of Autism, Preventing Autism, The Soul of Autism, The Autism Puzzle, Autism Heroes, The Empty Fortress by Bruno Bettelheim, A Real Boy, Mental Retardation: Nature, Cause and Management, My Friend Has Autism, Without Reason: Mother Warriors by Jenny McCarthy, Personality Development in People with Mental Retardation, In-Home ABA Programs, Finding Ben, The Only Boy in the World, and Dietary Interventions for Autism Spectrum Disorders.

This awesome photo originally appeared in this post on Lydia's blog. 

So, dear readers, if you really must look at this book, keep in mind that what you are really reading are the thoughts of autism parents and professionals working with autistic people. Please cover it with brown paper, and most importantly spare your treasured children from getting the impression that there is something is wrong with them.

Because there isn't.