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When Well-Intentioned Comments About My Children With Autism Hurt the Most

I have two children, now adults, on the autism spectrum. They are amazing and wonderful, smart and sweet, but they are different. That’s OK with me, and it’s OK 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 (intentionally 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’s just a “boy thing.”

Please do not tell me it’s a phase or they will grow out of it. It’s 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.” People on the autism spectrum don’t all 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. 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, and there’s 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 him how to pick himself 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? I believe God, in his infinite wisdom, gave me these amazing children as they are, and 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 it leaves a mark, an impact on the very heart and soul of me, of every parent with children with special needs. I know it’s 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 or judged you for something they do not truly understand, you might choose your words with a bit more care.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.