The Face of Autism

In the right light, at the right time, everything is extraordinary. (Aaron Rose)

It happens often. People meet Yael for a short while and later remark to me that had they not been told, they would never have known that my daughter has autism. My general response is that if they spend some more time around her, they would begin to notice some “quirks.” If they spend time with her amidst a neurotypical group of her peers, the social and emotional disparities would become more readily apparent. They might not be able to put their finger on it, but they would surely notice something “different” about her.

Would they immediately identify that difference as autism? Well I suppose that answer varies with their exposure to and experience with autistic people.

At other times, people have shared their observations in a more blunt manner.  “Wow! Your daughter doesn’t look autistic.” I am never really sure what they expect me to say in response to that particular statement. I suppose they are intending it as a compliment of sorts, or perhaps they think we got the diagnosis wrong. And while I recognize that there is no malicious intent to their words, I do not, in fact, find them to be complimentary; and rest assured she hasn’t been misdiagnosed. Rather, I often find myself wanting to respond to blanket statements such as this by asking a very simple question. “What exactly does autism look like?”

Then there are those who, knowing that I am raising a child with autism, come to me and ask me to assess, with little more than a cursory introduction, whether someone else might be autistic. The implication is that because of my experiences parenting Yael, I must have a built-in radar that allows me to immediately identify all other autistic children.

There is a saying in the autism community that, “If you’ve met one person with autism, you’ve met one person with autism.”

It is so true.

The spectrum is long and wide and the people with autism spectrum disorders are as unique and different as any one of us. The word “spectrum” itself is defined as “a continuous sequence or range.” Depending on where they fall on the spectrum, people may share certain characteristics and symptoms, that is true. But they are no more carbon copies of one another than you and I. My three daughters live in the same house, come from the same biological parents and have been raised in pretty much the same manner. They share the same genes, the same last name and the same family tree. That does not make them exact replicas of one another. Far from it in fact. The same can and should be said of people who live on the spectrum.

I know that when people tell me that my daughter doesn’t "look autistic," they are conjuring up the images they have seen on television or in the movies. They imagine those who are most severely impaired, non-verbal, in a continuous state of stimming (rocking, flapping, spinning) and unable to make eye contact. They think of Dustin Hoffman in Rain Man and look for savant qualities. The image they see in front of them when they look at my daughter, doesn’t fit the cookie cutter image of autism that society has trained them to see. But, even those who fit that image, who possess most of those very characteristics, also possess features and qualities that make them different, special and unique as human beings and as people with autism.

Autism does not have a single face. It’s characteristics are as long and as wide as the spectrum implies. You can’t look at a human being and immediately assess whether they do or do not have autism. The understanding of autism spectrum disorders is growing, and the perceptions that we have as a society, must grow along with them.

Over 300 years ago, Sir Isaac Newton discovered that the sun’s light is actually made up of many different colors. Those colors are not apparent to the naked eye. We see only the sun’s white light. But when that same light is viewed through a prism, we find the uniquely beautiful “spectrum” of colors that make a rainbow. Those who live their lives on the autism spectrum, cannot and should not be viewed through only a single type of lens, one that shows them solely in shades of black and white. Instead, we need to see autistic people through a prism, a view that allows us to separate a single defining view of autism, into a myriad of beautiful and unique individuals.

My daughter doesn’t look autistic, that is true. Perhaps that is because nobody can ever really know the one and only face of autism. It simply does not exist.