What is this thing we call autism?

I sat in a restaurant recently and overheard a server tell the table he was waiting on that he had autism. Not sure how this came up or what the context was but the woman at the table verbally patted him on the head in a sing-songy voice and said “Well look at you here waiting tables, good for you!”  I cringed and rolled my eyes. As a former waiter myself I wondered how you could encourage anyone to be waiting tables.  But I didn’t say anything.

Thinking about this interaction I was reminded of the many times I’ve heard people make comments that ranged from silly to down-right mean, with plenty of just ignorant comments sandwiched in-between. As someone deep in the autism community I have watched for many years as people correct the language of others.

“I am not autistic, I am a person living with autism.”

“These are not autistic kids, they are kids with autism.”

“It’s not a disorder, it’s a difference.”

There are many variations of this and they are all well intended, even if not always well delivered. Our often misunderstood community is seeking respect and dignity and the battle over language some days feels like the only battle we can win.

I fully acknowledge the importance of person-first language and other verbal gymnastics we ask people to go through in order to show respect. Even more, I acknowledge the importance for marginalized groups of all shapes and sizes to be identified as they choose.  

What was more interesting to me as I sat in that restaurant listening to the woman fawn over her “waiter who has autism” was the amount of disagreement among those in the autism community about what exactly autism should be called. A quick google search will bring you several pages of points and counter-points written by those with autism about what language they are comfortable with and believe is appropriate.  In true autistic fashion, the discussions are not exactly flexible.

I will not suggest here that there is a right phrase or term we should be using because I don’t believe that is true.

What I would suggest is that the lack of cohesiveness in how those with autism want to be identified is not as simple as personal choice. I think the chat-room and comment section battles on the internet show the tip of an iceberg that few people are talking about.

Is autism even real?

Perhaps part of the reason it is so hard to settle on one agreed upon set of words for what we call autism is that autism is not really a thing. It is many things. There is a growing voice among researchers and doctors suggesting that what we call the “autism spectrum” is really several different genetic disorders (insert the word you like better than disorder here). As better research and science reveals these things to us we might discover that treating several different diseases as one is part of the problem.

Everyone wants to be high-functioning.

If you have not yet read the book Neuro Tribes by Silverman it’s worth your time. stevesilberman.com  Among other things it explores the history of the terms Autism and Asperger’s and how they came to be. In short- everyone wants to be high-functioning and nobody wants to be low.  I don’t write this lightly. There are very different realities for those at opposite ends of what we call the autism spectrum and it is understandable that this causes dissension and disagreement in how we label these things.

Is the rise in autism almost completely manufactured?

As advocates and members of this community we quickly become defensive when someone suggests that the autism math of the last several decades doesn’t add up. But just among us let’s acknowledge that it doesn’t. With the reported rates increasing every six months everyone will have autism soon.  Would that be all bad?  Different blog post.  For now let me submit that the difficulties we have in describing autism are in some ways related to our inherent understanding that everything we are calling autism is probably not so.

Is autism a reward or a curse?

I have sat through many hours of support groups and community events and there is often a parent who shares how they celebrate their child’s differences and believe autism has made their child special and they wouldn’t change a thing. There is also often a parent in that room who doesn’t say anything because if they dared try, their eyes would flood with tears and the words wouldn’t come. Because for them autism is the worst thing that ever happened to them.  How do we find language to unite these two very different experiences?

I think we struggle to define what autism is and how we should talk about it because autism is hard. Whether you celebrate it or shake your fist at it- and I do both- it can feel as if there are few victories when a child is born different than you thought they would be. But the victories are there. They are hiding in different places than you thought they would be and they tend to come when you aren’t looking for them. But they are there.  Maybe what is more important is that we are talking about autism and careful not to silence the conversation by reprimanding people for how we talk about it.

After all, as a former server I know there was probably a 50/50 chance that waiter with autism spit in the woman’s food. Just saying. The universe has a way of balancing the scales for us.