When Em was not yet three years old we received her diagnosis and began the long trek through, what appeared to us at the time to be, the treacherous terrain of autism. All the things we admired, her various abilities, all those things I had identified as wonderfully “Emma” were now reduced to a single word “autism.” I remember bragging about the fact that Emma, at the age of 18 months had taught herself how to pump her legs on a big kid’s swing, only to be told after her diagnosis that “kids with autism will often display splinter skills.” When I then commented that my daughter was extremely independent it was said that her autism caused her to shun other children and people, thus reducing her independence to nothing more than, yet another example of, her autism.
After awhile I felt I didn’t know who my daughter was, other than “autistic”. That word seemed to so thoroughly obscure her in the minds of so many experts and people in the know. Autism, it seemed, meant lacking and less than and not capable. Whenever my daughter displayed things that could not be neatly placed in the deficit box, it was tossed into the “splinter skills” box. It seemed no matter what she did it was viewed as “deficient” even when it wasn’t. I remember feeling I finally understood what people meant when they talked about their child being imprisoned or all those awful images that abound of children silently, sadly, standing behind impenetrable walls of glass or behind bars of steel, their small hands gripping the cold metal as they silently watch the world go by. All of this, the words and images, showing us, telling us what we could and should expect were like seeing train tracks descending into hell. Who knew it would take me eight years to understand that so many of those impenetrable walls of glass were constructs made by us.
If we did the same thing to those who are born without Autism, if we talked about our non-Autistic neurology as a deficit and identified all the ways in which it would cause us problems and difficulty, would we not despair when our non-autistic child was born as well? Take your own life as an example and imagine that when you were born you were seen as a great disappointment. Think about how each time you did something well it was dismissed as a “splinter skill” and was seen as yet another example of all that was “wrong” with you. Think about what it would do to your self-esteem if your interests and passions were spoken of as “obsessions” or actively undermined and limited because they were seen as “unhealthy”. It’s a double standard we have. We non Autistics are praised, admired, given awards and accolades for our passions and obsessive interests. People describe us as “driven”, “ambitious” or any number of other words used to describe the things that interest us. But think if instead we were denigrated, ridiculed and scolded. What does that do to a person?
The way we speak of and about our children, the way we think about their neurology, the way we attempt to “help” them “fit in”, these are the things I hope will change because it is not helping us parent our children, who need our help, it is not helping educators teach our children, who need to be taught, but mostly it is not helping our children be all that they can be. My husband once said, “People spend all their time and energy trying to teach their Autistic kids to be something they’re not, when they should be spending all their time teaching their kids to be all they can be.”
Emma’s favorite work of art “Railroad Nostalgia” at the Scope Show in NYC.
Emma's Hope Book 