On Thursday, the White House released a Presidential Proclamation on World Autism Awareness Day, a subject in which I have a keen interest. All too often, awareness of autism comes in the form of ignorance, misinformation, and outright slander, even from those who are supposed to care the most about people with Autism Spectrum Disorders (ASDs). As the parent of two autistic kids, I'm constantly learning new things about it, so it was refreshing to see the focus of the president's proclamation reflect the things I've been hearing from many autistic self-advocates (emphasis mine):
My Administration is committed to helping Americans with autism fulfill their potential by ensuring access to the resources and programs they need. The Affordable Care Act prohibits companies from denying health insurance because of pre-existing conditions such as autism, and the law also requires most insurance plans to cover preventive services -- including autism and developmental screenings for young children -- without copays. Last year, I was proud to sign the Autism CARES Act of 2014, which bolstered training and educational opportunities for professionals serving children or adults on the autism spectrum. And as part of the BRAIN Initiative, we continue to invest in innovative research that aims to revolutionize our understanding of conditions like autism and improve the lives of all who live with them.
The one thing I've heard over and over again, from autistic people, is resentment over the emphasis on treatments and cures, rather than on services to improve their lives. Autism Speaks, the most well-known autism advocacy group by far, has especially been a target of this criticism, as they gobble up most of the available dollars, but spends only 4% of them on services. The president's statement emphasizes understanding a condition that is frequently misunderstood, and helping to improve the lives of the people who have it.
It's one of several schisms in the autism community that seem to roughly divide between autistic adults who are able to communicate with the neuro-typical community, and the parents of autistic kids. If you've never been able to have an actual conversation with your child, it's probably tough to listen to an autistic adult tell you to give up on a cure. It's also probably really hard for an autistic adult to watch you spend money researching gut bacteria instead of helping them out.
One thing I discovered this year while writing about autism (about which I am not even close to an expert) is that there's also a schism around the language used to describe people with ASDs. The president's proclamation uses what's called "person first" language, as in "person with autism," as opposed to "identity first," like "autistic person." As a parent, I had always been told, and believed, that "person with" was better because it emphasizes the humanity of the child, but I think that was as opposed to just plain calling someone "an autistic," which can sound dehumanizing.
When I began using that form in my writing, however, many autistic people objected, and explained that the "person first" language is hurtful to them. There are many excellent explanations of the reasoning behind this, but here's a brief one from the Autism Self Advocacy Network's Lydia Brown:
Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.
Now, before you start shrieking about language-policing, keep in mind that there isn't exactly unanimity on the subject, and the "rule," if there is one, is a rule you should apply to anyone you ever meet (emphasis mine):
Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call him or her a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you should also respect his or her preferences in referring to him or herself, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right.
Having said that, the only "confusion" I've encountered on the topic is from the parents community, and given the choice, I usually go with listening to the people who actually are autistic. Admittedly, I have a strong bias against autism parents because there are so many horrible examples of them presented by the media, and because most of the ones I've known personally spend most of their time complaining about how tough their own lives are.
If they're unable to determine their kids' preference, then what to do? Well, I have two kids on the spectrum, one child and one adult, and only my oldest can make me understand him. However, given the two descriptions, I'd have to say that "identity first" fits my little guy, Liam, the best. If someone waved a magic wand and got rid of his autism, he would be a completely different child. Given that ability, I don't think I'd want to risk changing all the things that are beautiful about him. I'd be wishing for some other kid. On the other hand, when I see his profound discomfort at the world that often surrounds and overwhelms him, I wonder if he would wish it away if he could.
It was in pondering this question that I realized something important that I could learn on World Autism Awareness Day. My oldest son Justin had never told me his preference, and I had never asked. When Justin was Liam's age (ten), he was basically nonverbal, communicating mostly through rote repetition, but that began to change as he grew up. Now, he's a successful graduate of a prestigious masters program, and works for a major tech company. I'm sure his autism shaped him immeasurably, so I don't know if he'd go back in time and wish it away if he could. Maybe I should have asked him that.
Instead, I asked him how he prefers to be referred to. "I guess essentially a 'person with autism'," he said, adding "usually I explain it by saying something to the effect of 'I have Aspberger's, which is on the autism spectrum.' It's similar with Liam; I say he 'has autism' or 'was diagnosed with autism' rather than saying 'he's autistic'. I dunno, when I think about it, I feel something sorta accusatory about calling someone autistic or an aspie, hehe."
As it turns out, he didn't know it was a thing in the autism community. "For real?! That's interesting," he said when I told him that some people prefer identity-first language. "Guess their vantage point on it must be different from mine. Well, ultimately, it's not like I'll really be offended by any particular term if the person is acting in good faith; they're all worlds away from "retard'."
That's what I learned on World Autism Awareness Day, from the person I admire most in the world. How about you?