What I've been reading - June 2014

Here are some things I've been reading that you might find helpful, informative, or inspiring. Bury My Son Before I Die. "I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do." Gut-wrenching and brutally honest. Read more

When You're Gone: Practical Planning for Your Child's Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they're gone. Read more

The Obsessive Joy Of Autism. "If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not 'age-appropriate', stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared." Read more

Sesame Street, This is an Autistic Speaking. An adult with autism makes a heartfelt plea to Sesame Street to reconsider its partnership with Autism Speaks, an organization she feels stands in stark contrast to the inclusion and acceptance Sesame Street is known for. Read more

On Education and Communication; A Message to Parents, Professionals and People with Autism. A powerful, hopeful message from Ido, a young man with autism who, though once written off by teachers and therapists, is now proving them all wrong. Read more

I Am a Pushmi Pullyu. A 50-year-old with autism comes to grips with being both an extrovert ("Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist.") who struggles with social situations, sensory issues, and PTSD. Read more

Tips for Encouraging Joint Attention. Fun, easy ways to do just what the article title suggests. Read more

What I Wish Your Child Knew About Autism. Ten things one mom wants you and your non-autistic child to know about her son, Leo. Read more

Out of the Closet. Observations by Ido on all the children who are "new communicators," finding their voice through assistive technologies. Read more

And finally...

Mayor de Blasio and Speaker Silver Announce New Steps to Help Families of Students with Disabilities. Great news for NYC families — like ours — who have struggled with the DOE. Read more

Not Even Wrong

notevenwrong@2x Shortly after C's diagnosis I began reading everything I could on autism. I focused on possible causes, potential therapies, and what we might do to make things better.

After a while, I needed a break; I wanted to read something that wasn't autism-related. One of the last books I read before C's diagnosis was The Murder of the Century by Paul Collins, a smart and insightful non-fiction account of early 20th century journalism and its handling of a terrible crime.

Since I liked his writing, I decided to look for other books by Collins. Imagine my surprise when I discovered that he'd also written Not Even Wrong: A Father's Journey into the Lost History of Autism. The reviews were glowing, and the back cover description enticing:

Not Even Wrong is a haunting journey into the borderlands of neurology — a meditation on what 'normal' is, and how human genius comes to us in strange and wonderful forms.

The book captivated me; besides being beautifully written and sincere, it's a touching account of a parent's journey shortly before, during, and after receiving an autism diagnosis. More, though, it provides a wonderful and telling history of autism, and paints fascinating portraits of historical figures, infamous and famous, who were likely autists themselves.

Not Even Wrong was the first thing I'd read — or even really experienced — that helped me come to grips with the diagnosis and even begin to embrace it. I'd like to describe this transformation, but I don't think I'd do it justice. Instead, I'll just cite a couple of passages that demonstrate the sorts of insights that, to me, were revelatory:

"When Morgan's diagnosis first came in, all I could think of was: How do I fix him? How do I make him normal again? But there was no again, not really, because there never was a before. He has always been this way: it is who he is. Still, I wanted him to be able to fit in, to not have to feel that he was different. Just some special classes, some special help, I'd figured, and he can get along in the regular school classes, he can be mainstreamed. And I supposed it's a fine thing to fit in, when you can. If he does, that will make things easier. And if he doesn't?..."

And this, on trying to mainstream:

"...and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you are destroying the peg. What if normal school makes you abnormally miserable? And what if growing up into normal society makes you a miserable adult? Is that success? Is that normal? Do you want to be in the mainstream if it's going to drown you?"

And, finally, this:

"Autists are described by others — and by themselves — as aliens among humans. But there's an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, 'Where's that man's arm?' But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the results."

I've recommended Not Even Wrong to several parents after they've received an autism diagnosis, but I would also recommend it to anyone — friends and family included — with an interest in history, neurology, psychology, autism, and unconditional love. You won't be disappointed.