I have two children, now adults, on the autistic spectrum. They are amazing and wonderful, smart and sweet, but they are different and that’s okay with me, it’s okay with them. Most of the time, the outside world doesn’t get to us, but now and then, it does.
I’ve encountered many different types of people on our journey through life with autism, some are supportive and accepting, some are cruel, intentional or not, and then there are those seemingly well-meaning people who unintentionally fall somewhere in between.
Those are the ones who can sometimes hurt us the most. They can be loving friends, family or complete strangers, it doesn’t matter who they are, what does matter is what they say.
Please do not tell me you understand. You do not. There is no way you could.
Please do not tell me your typical child does the same things, trust me, there is no comparison.
Please do not tell me it is just a boy thing.
Please do not tell me it is a phase or they will grow out of it. It is not and they will not.
Please do not tell me I need to discipline more. Discipline does not cure autism.
Please do not look at me or my children with pity. We do not need it nor do we want it.
Please do not ask me if I wish they were different. I don’t.
Please do not give me advice unless you walk the same walk we do.
Please do not tell me what worked for your child unless your child happens to be autistic.
Please do not tell me they do not look autistic. That is ridiculous.
Please do not tell me they do not act autistic. No two autistics truly act the same.
Please do not say things like, “If that was my kid, I would . . .”.
Please do not accuse me of letting them get away with things. I certainly do not.
Please do not ask me what I did or did not do during my pregnancy. That has nothing to do with it.
There are more, but I think you get the point. I hope so. I spend every minute of my life trying to teach my children coping skills, daily living, and social skills. The fact that they do not always ‘act’ autistic is because of the amazing strength and determination they have, and to be honest, because of mine as well. So sometimes you will see them like they are any other young person their age, and other times you will see them in all their autistic glory.
I discipline my children, maybe not the same way you do, but I do. Everything is a teaching moment, there is a difference between discipline and punishment. You do not punish a toddler when he falls as he is learning to take his first steps, you help by teaching them how to pick themselves up and try again.
When someone asks if I would change them if I could, it infuriates me. Would you change your child? The fact is, personally, I wouldn’t and the fact is, I can’t, so why ask such a silly question? God, in his infinite wisdom, gave me these amazing children as they are, I accept and love and cherish them without question. The first time this was asked of me it broke my heart. From the moment I laid eyes on them, the moment I realized they were different and every moment since, the thought has never crossed my mind that I would want them any other way.
What you say and how you say leaves a mark, an impact on the very heart and soul of me, of every parent with special needs children. I know it is impossible to put yourself in our shoes, to imagine what life is like, but if you could just stop and think about how you would feel if someone gave you a backhanded compliment, belittled you and judged you for something they do not truly understand, you might choose your words with a bit more care.
Crystal R. Cook
“When someone asks if I would change them if I could, it infuriates me.”
Understandably so, Crystal.
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I think the “I understand” is meant to be nice but it is so patronizing. The “They don’t look/act autistic…” Ugh! And this one gets me: “Please do not tell me your typical child does the same things…” I hear this all the time.
You are so right that everything is a teaching moment. Also, that they do not “act” autistic because they try so hard and we have spent so many years teaching them. I have written about this. It often comes back to bite us in the arse because mine are still young(ish) and we don’t always get the help we need. Oh, I could go on but I’ll spare your comment section. 😉
Beautifully, perfectly said. Thank you.
I wish everyone would see this list.. of what NOT to say. Sharing!!
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So perfectly stated. Thank you. Hugs!
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