5 (actually 6) Things Not to Say to an Autism Parent

This post was originally run in April, which was Autism Awareness Month.  It seems that in Canada October is also Autism Awareness Month, which I’m presuming is to keep our Canadian Thanksgiving company, and distract it from the fact that it doesn’t launch a major shopping season unlike its American counterpart.  So that, combined with the heated debate over vaccination, have me wanting to revisit this post, and I’ve added one more thing not to say to me at the bottom.

 5 (actually 6) Things Not to Say to an Autism Parent

The month of April has been Autism Awareness Month, and I haven’t really written very much on the topic.  So I decided that this would be a good opportunity to do just that. Or in other words…I’d better get my ass in gear!   Autism is a highly charged topic with very strong opinions from every direction.  That has the effect of making me withdraw because I am just too damn tired to have to deal with someone attacking me for what I believe. Or worse…listening to every Tom, Dick and Harry’s bit of advice that they saw on Dr. Oz, or what worked for their cousin’s diagonal neighbour twice removed.

So since this is a site for being blunt and speaking my mind…here is what I don’t want to hear from you about my kids.  Even when I know you mean well. I know you do.  But shut up. And give me advice I can use.  Like where to buy cheap wine.  Or how to fake my own death for a week of heaven in the tropics.

1. Don’t tell me how much of a burden it is on you that you have to drive your kid to soccer 4 nights a week because they are so good and they are in the elite league.  Yes, I get that it is a pain, and you have every right to complain.  Sort of (you did bring this on yourself).  But to someone else.  I would kill to have my kid’s extra-curriculars be anything other than speech and occupational therapy.

2. Don’t ask us if we are eating a gluten-free diet or have eliminated milk products.  When I say no, don’t take that to be an invitation to tell me about Jenny McCarthy.  I will bite you.  Maybe my rage issues are triggered by the bagel I had this morning.  After a 2 hour elaborate process of getting my kids ready for school, involving token boards, dressing strips, and treasure boxes, all directed by a behavioural therapist.

3. When you see us in the middle of a meltdown, instead of staring, please offer an understanding smile, mind your own business, or if I’m being particularly greedy…HELP me!  Maggie is 7 now, and very big and strong for her age, so the dirty looks about my “undisciplined” child are increasing, because you would expect a kid to outgrow the terrible 2s by this age I guess.  Well guess what?  She is not misbehaving. She is unable to cope with her environment. And a 2 year old is a hell of a lot easier to carry to the car.  And even if it were a tantrum rather than a meltdown, and if you see a parent having a hard time with any child, special needs or not, wouldn’t you want a little help rather than judgement?  Treat others the way you want to be treated.

4. Just like how I don’t want to hear about how gifted your child is in sports, and what a scheduling nightmare it is for you, I also don’t want to hear that you are worried about little Susie having trouble writing in cursive at the age of 3.  Or even that little Bobbie is slightly behind in reading, so you have hauled his 7 year old ass into Kumon before his chances of getting into law school are completely dashed.  My kid doesn’t know her letters or her numbers reliably, and after working diligently at 5% of the kindergarten curriculum, and still struggling toward the end of grade 2, we have abandoned the curriculum completely and gone alternative.  So pardon me if I have trouble showing concern for your kid’s “academic crisis.”

5. Finally, for the same reasons as above…no I don’t want to see how your baby can blow kisses and wave.  I’m happy for you.  Really I am.  But seeing what your tiny baby can do, that my 7 year old can’t is just too painful.  Because you see, Maggie used to do those things.  And even did all the motions to Wheels on the Bus.  And then it slipped away.  And the memories of it happening get fuzzier with each passing year, to the point where it feels like I made it up in a dream.  And seeing your baby wave is a glass of ice water in my face to wake me up.

6. I can see it in your face when you are getting ready to ask me.  I try to change the subject – look a squirrel – but you just can’t help yourself.  “Do you think vaccines caused your kids’ autism?”  No matter how sincere you may be in wanting to understand, not judge, I find it incredibly hard to resist asking “Do you think having a Mom who is an ass caused your kid to be a delinquent?”  Instead I launch into my standard reply of “No, we know that autism in my children is genetic, and there were signs of it in Maggie from the beginning when we look back.  We’re fully to blame – maybe not from anything we did, but just by procreating.  But thank you for my daily dose of guilt – I was feeling pretty good today, and we can’t have that can we?”  Okay, so the last 2 sentences are mostly said in my head – and with my eyes – I’m told that my face gives me away every time.  Most people will leave it at that, which is great.  But then there are the ones who ask me if they should get their child vaccinated.  The underlying message in what they are asking me is that they are trying to prevent their child from “catching” what my kids have.  And while I can’t blame them – autism is a long and shitty road if I am being blunt – it is much like asking a cancer patient how they fucked up and got cancer, and what should I do differently so that I don’t end up like you?

Before you jump all over me, I am not comparing autism to cancer in any way – just using it as a don’t-blame-the-patient analogy.  I have my hands full being me – I don’t have the time or energy to make sure that you don’t have to be me.

I realize that it sounds like I want you to tip-toe around me like I am a fragile doll, and it all sounds terribly high-maintenance of me.  Really I’m not.  I can take it.

But it would be nice if I didn’t have to.