Oddly, I learned a new word today as I was preparing this post: obscurantism – the opposition to the spread of the increase of knowledge. “Obscurantism originally comes from the Latin root obscur meaning “dark” and the suffix -ant which turned a verb into a noun (as in the word servant), so the word literally meant “one that makes dark.” I think, unintentionally, I engaged in “obscurantism” yesterday.
“My son has autism,” I answered to the stranger.
“Oh, don’t they have a test so you can find that out when they are still inside the womb?” she asked.
“No,” I responded. “There is no test for autism.”
Silence. Then she asked, “So how did you find out he had autism? Was it when he was born?”
“No,” I responded. “We did not know until he was over three years old. With autism, there is a language delay and frustration from that inability to communicate that can lead to meltdowns.”
“Oh. Well, do they know what causes autism?”
“No, they do not.”
Silence ensued and time passed. As the moments passed, I wished I had said something smarter, wittier, more profound and educational. Something that would have conveyed more information. But on the spot like that? I was not going to win the Autism Awareness Mom of the Year Award.
Here I was faced with pure ignorance. I don’t mean that in a rude way, but simply as a matter of fact. No exposure. No knowledge. No reason to know. And I had a chance to educate. And I failed. Isn’t that ironic? Miss, I-want-to-educate-the-world, fast-talking lawyer, failed.
When she asked if there was test for autism, I think the hair on the back of my neck stood up. Why? Why did it bother me, coming from someone who knew nothing?
The implication was there. The preconceived notion. The perception. The discounting of my son’s worth. That because my son is not “normal”, he is less. No one, thus far in my life, has asked me if I had an option to terminate my pregnancy, stranger or not. The manner in which it was said was one in which it was clear she did not intend to offend but she did. And maybe I should not be offended. What do you think? Should anyone ever ask that question to anyone, much less the mother of any special needs child they don’t know?
I needed a better response. Something that answers questions quickly and thoroughly. But when I thought about it, there are no easy answers to autism. I don’t know an easy way to explain it to a stranger who is not terribly interested, but has asked.
In the autism community, there is a saying that when you’ve met one person with autism, you’ve met one person with autism and this is true. Autism is a spectrum because there are people who are severely affected by it and people who are mildly affected and all those in between. Everyone manifests it in different ways.
Should I describe it with the common denominators, social impairment, language deficits, repetitive behaviors, frustration from that inability to communicate, sensory processing disorder? That all seems like a lot of information for someone you don’t know and who does not know what they are getting into when they ask. Should I just say it is a developmental disability related to language and social interaction and the way information is processed and affects each person differently?
And how in the world, does one respond to a question about whether you had the opportunity to terminate a pregnancy due to a child that would be born with special needs? Should I tell her off? Should I get on a soapbox and explain why I believe that is wrong? Do I have to explain my love for my child no matter what?
I shouldn’t have to and I know I don’t have to because I didn’t. But nevertheless, I want to have comeback for the next time I am asked these questions. I still don’t have one. Do you?