I need a comeback.

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.

I did not make conscious decisions about my moves.  I just reacted.  I was awkward and surprised, taken aback and annoyed.  But I kept all that to myself.

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?

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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19 Responses to I need a comeback.

  1. I can’t believe someone would say that (about a prenatal test for autism). This must be the week for people to be blatantly rude to autism families.

    You’re right that it’s a hard thing to describe to someone who literally knows nothing about it. I’ve often thought I need to come up with a 60 second “here’s what autism is, at least to my son.” We talk and write all day about autism, but then when you’re put on the spot like that it’s just hard to know where to start!

    • solodialogue says:

      It is weird to try and come up with a quick, less than a minute synopsis of something we spend hours, days, and years, blogging and reading about and living every single day.

      I don’t think she was intentionally rude (like the people in AJ’s doctor’s office). I did get the impression that she wanted to know because she wanted to know if there “was a way out” of raising a special needs child. I hate to say that but I think that is how she meant it. It is a shame too because there is no way we could explain the love we have for our children and that person will never understand it. 😦

  2. blogginglily says:

    I understand why you interpreted the question the way you did. But, do you really feel in your heart of hearts that this stranger linked “prenatal testing” with “abort” baby when she asked it? There is NO WAY she made that leap (in my opinion). To make that conscious link and ask that question is a very real slap across the face. If she was otherwise courteous, she just asked the question because 1) our kids look the same as any other kids. so how can you know? 2) she didn’t really understand what autism was, and was curious.

    It’s easy to see from your perspective why that was an offensive question. I think it was thoughtlessly asked, but harmless; satisfying curiosity, rather than implying that with proper testing you wouldn’t have carried your son to term.

    • solodialogue says:

      Well, I don’t know. “Prenatal testing” to detect disabilities is to prepare people with “choices” and those choices include terminating a pregnancy. Even though I believe that is the reason she brought it up, I don’t think she did it to be rude. I think she did it because she wanted to believe there would be a hypothetical “option” in her own mind, for herself, if she was faced with the reality of a disabled child.

      As for (1) – my son was not with me when this conversation occurred and she had no idea what he looked like. As for (2) she definitely had no experience with autism but I’m not sure she was curious as much as attempting to make conversation.

      I wonder if our different perceptions arise from gender…

  3. mamafog says:

    People ask the nosiest questions. I like to think they are curious and have their own reasons, but some people are rude.

    After you told her there was no test for autism I might say “Why do you ask?” If I felt snarky I might add “Did you go through genetic counseling during your pregnancy too?”

    I think your explanation about autism is just fine. No one is going to listen to a lecture. If you really feel like you should be spreading more information you could start carrying cards with your website or a description you like.

    I do think that as autism parents and bloggers, we do have a certain responsibility to get the message out there. But we don’t have to try to make others feel better about our child’s disability, and often that is what I feel like questions like these are really doing for the person asking.

    If people ask me if there is a cause, I tell them about things that can help people with autism.

    • solodialogue says:

      I should have asked her “Why do you ask?” (!) It was like one of those moments when you are halfway through the answer and you recognize the question for what it is and go, “Hey -wait!”

      I know that no one wants to hear a lecture but I wonder if a 30 or 60 second something would help. Cards are something I think about from time to time because people I meet actually do ask for the website address and the idea is to spread the word.

      I like your idea of telling people about things that can help others with autism.

      I would combine it with something an autism mom that I know and respect very much told me today. She said that when someone says things along these lines to her, she tells them that they should never feel sorry for her son, that he does not need pity and he is an amazing human being with many gifts. That’s succinct and gets a clear message out there! I’d like to use that and follow with your idea about helpful things. 🙂

  4. Grace says:

    I have about 19 things I could say about this. I’ll try to keep it brief.

    I recoiled at the “testing in the womb” question too, but I didn’t think “abortion,” my mind went to “you should have known…why didn’t you know?” and “you knew what you were getting yourself into” and even “you come from a really crappy gene pool.” But that’s just me being sensitive and defensive of my little man. Coming from where we autism parents come from, who could blame us for a little sensitivity and defensiveness? However, I can’t help but wonder where this conversation might have gone if you were the mother of a child with Down Syndrome.

    Also, you are not guilty of obscurantism. I couldn’t explain autism in a meaningful way to my own 88-y-o grandmother. Gah.

    As if we autism parents don’t have enough responsibility, why does it have to be our responsibility to educate the entire world about autism?? Because if we don’t, no one else will. I get it. But honestly, who can walk around with an informative and inspirational speech prepared in their head every day? And do strangers who ask questions even really care, or are they just making small talk? Gah!!!

    The “comeback” title of this post has caused me to rap LL Cool J in my head all morning. It’s a cool song, so I’m OK with this.

    And now I’m done.

    • solodialogue says:

      Should have known, then leads to abortion, doesn’t it? Or just that we should not procreate at all? I wonder too, what she would have said if I told her my son had Down’s Syndrome… I think I would have got the exact same questions.

      I don’t know how much we can explain to 88 year old grandmas no matter what we’re explaining…

      I love that song. Little Tootles has a T-shirt of it and now, I’m listening to it. 🙂

  5. Lizbeth says:

    Thank you Grace for putting that song in my head. No, thank you. At least LL Cool J is easy on the eyes.

    I don’t have a come back. 90% of the time I’m so flustered with what my own kids are doing and what I’m doing with them that people just tend to ignore my little mess and try to forget we’re even there. Come to think of it most people tend to shy away from us when they see us coming. Maybe that’s a solution???

    Here’s the thing, I don’t think you missed the mark. Sometimes people are genuinely rude, stupid, just plain ignorant, whatever. What I say is usually dependent on the other person and what I can figure out their motive is. If a person is nice and wants to know more then I’m all over it and will tell them pretty much anything they want to know. If they’re trying to be nasty or judgmental I get snarky (shocking, I know) and I move on.

    • solodialogue says:

      Well, you pretty much have it covered! My problem is that I’m not sure what this person’s intent was. My feeling is that it was small talk, unintentionally, really thoughtless small talk and not rude. What happens when they fall in this gray zone?

      I was alone at the time -so it was just awkward.

      And you “snarky”?! Around these parts, we just call that “justified-ly righteous”….;)

    • Grace says:

      @ Lizbeth – You are welcome. And yes. Yes he is.

  6. Tam says:

    That question really would have ticked me off, for various reasons. And yes I do think that’s where she was going with it. The only real reason to get that prenatal testing done is to see if you should abort or not, and something like 80% of children’s with Down’s are aborted now because of the test. I would have said “no, why do you ask?” just to put her on the spot, and then probably ended up ranting about the value of a life… that or I would have stood there in shock just staring at her til she went away.

  7. Aspie Mom says:

    When the medicos push you to test early they always claim it’s “so you can be prepared” and “time to adjust emotionally”.

    Educating the public: done that a lot.
    Remember the mantra for sex education for your kid? Answer the exact, literal question they ask (even if it is the question in their eyes). If they want to know more, answer that. Meet them where they are.
    Your perfectly open, calm, matter-of-fact love of and pride in your child, your regarding them as being as fully human as anyone else, will be the most impactful message you give, lasting much longer than your words.

    Our gift to our kids is to never let our kids see the pain the world’s ignorance causes us, but to show only the beauty and perfection of our children reflected in our words and actions.
    To acknowledge the pain gives legitimacy to the stereotypes and lies.

    • solodialogue says:

      Oh how I love your last two sentences. You have a beautiful way of seeing things and teaching me so much! You gave me chills with that. I will try to live up to it because it really says it all. xoxo

  8. Kara says:

    I have long given up hope on producing any sensible retorts on command. Instead I drool, sometimes tic, and laugh uncomfortably like a constipated hyena. I came to the conclusion recently that there are just some teachable moments beyond my scope given the current planet alignment, unshaven legs, or general ability to feel bothered. I invite you to stop shaving your legs and join me in my cocoon of margaritas and senseless ramblings.

  9. I hate those comments from strangers that leave you wanting to say more but not knowing how much should be or needs to be said. They always leave you questioning yourself and that has got to be the worst feeling ever!

    My solution? Keep writing.

    I’ve never been good with words on the spot. I need time to mull them over before I choose the ones I need. And writing has provided me with that luxury.

    So, maybe it is true that the woman who asked those questions will never see your blog — but maybe someone like her will… and that can change a lot!

    Speaking of getting people to see your blog, have you thought about using calling cards? There are web sites like VistaPrint that will make you a set of cards for next to nothing. Then you can just hand those Nosey Nancys a card with URLs for Autism Speaks, your blog, and any number of other references… just a thought…

  10. ElizOF says:

    No comeback is needed and please stop beating yourself up for answering her questions the way you did. Perhaps the fact that you gave her a taste instead of a serving might make her seek more information on the subject and educate herself… we never know. 😉

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