What Not To Say to a Parent of an Autistic Child

1. “He can’t be autistic because…” I heard a million reasons why Casey couldn’t be autistic when we were in the process of getting him diagnosed. They ranged from “He just looked me in the eyes!” to “He’s nothing like Rainman!” Parents have a hard enough time coming to terms with their child’s diagnosis all on their own. We spend months saying those very same things to ourselves. Then we get to a point where we know that what we are doing is right and seek out help. Having to constantly defend what we are seeing is taxing during a time where we don’t have much left to give. Autism comes in all shapes in sizes. It’s a spectrum of abilities and disabilities. It’s never the same in two children with the same diagnosis.

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Instead, say: “I’m new to autism; can you tell me more about it? What’s Casey’s autism like for him?” I love when people ask questions. It means that they are stepping outside of the stereotypes they know and are really wondering what autism means to us. It means they care and they want to learn more about my son. I don’t expect everyone to be an expert on every diagnosis out there. What I needed most was for people to just be there for me. After Casey was diagnosed, one of the greatest things said to me was, “He’s still the same kid he was the day before he was diagnosed.”

2. “He’ll probably grow out of it.” It’s been seven years since my son was diagnosed. He has not and will not grow out of it. He was born this way and his autism is a huge part of who he is and what makes him amazing. He has achieved so much through his hard work and through the talents of many amazing teachers and therapists, and he will continue to be autistic. Saying he’ll grow out of it discounts the hard work he has or will do. It also discounts the many good things his autism adds to who he is.

I want people to accept Casey for who he is, autism and all. I love it when people accept his quirks and even embrace them. My friend Erin has always done this. For a while after we first met, Casey would greet her by running headfirst into her. So she would turn around and do the same thing to him. It made him giggle uncontrollably.

I love it when people embrace him. I love being asked what Casey likes. I love it even more when people ask him what he likes. Anyone who is around Casey for longer than ten minutes ends up loving him for who he is, and that’s not in spite of or because of his autism. It’s because he’s a great kid.

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3. “I read that autism is caused by…” Please. Please don’t tell me that you’ve found yet another study that says it’s the mom’s fault. Please don’t post it to my Facebook wall that my being a little overweight or my living by a highway caused my son’s autism. I feel enough damn mommy guilt as it is. There is a new “study” published every week. I’m a fan of good research. The problem with these studies is that they are correlational. Correlation between two things does not mean that one caused the other, as is erroneously implied. More and more, the cause of autism looking to be all genetic. But, if you’re slightly masochistic or just enjoy a good argument, mention either side of the vaccine debate. See how that goes.

4. “I heard that you can cure autism by…” Oh, you are stepping into a minefield with that one. This has to do a lot with number three, above. We don’t know for sure the cause, and there is no cure. In fact, using the word “cure” in conjunction with autism pisses A LOT of adults with autism off. They like who they are, autism included, and do not want to be cured of something that makes them who they are.

Beyond that, there are too many shady doctors out there peddling snake oil treatments at an obscene cost. The “treatments” range from the benign waste of money to just downright dangerous. You can find everything from bleach enemas (I kid you not, ask Jenny McCarthy!), hyperbaric oxygen chambers, chelation, to funky saunas (You know, because people with autism love being enclosed in small, dark and hot rooms). Too many times people, whether they be celebrities who think they are doctors or doctors who care too much about being a celebrity, act as if you’re not doing everything they are doing, buying every one of their expensive and unproven treatments, you are not a “warrior mom” and you’re not trying hard enough for your child. I’m sorry, that’s bullshit.

Most parents go to great lengths to treat their child’s autism and to give them the best chance at being their best selves. My son has had speech, occupational and physical therapy since he was 18 months old. We tried alternative diets, but they didn’t work out for my son. These were never in an attempt to “cure” him, but to help him have the best chance at success, however that comes to him.

I’m always grateful that people are paying attention to autism related stories. It’s really nice that people care enough to want to have a dialogue about autism. I’d much rather have you say though, “Do you have any favorite books about autism? Where do you go for your information?” This is so much better than inadvertently making us feel like we caused our child’s autism and now aren’t doing enough to cure it. (On a personal note, if you say to me that “Jenny McCarthy cured her son, why haven’t you?” You’re likely to get punched in the throat. )

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5. “You’re my hero!” “God knew you could handle this!” “Special kids for special parents” and other such platitudes. I swear there will come a day that I roll my eyes too hard at one of these that they’ll get stuck inside my head. I get that you’re trying to be nice. I get that you think you couldn’t do what I do. I know you want to think that there’s something amazing about me that gives me the ability to handle having a child (or two) with disabilities. But there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation.

I cannot emphasize this enough: special needs kids aren’t sent to special parents. Some parents are amazing without even having a kid with special needs! Some parents just plain suck, and some of those do in fact have kids with disabilities. I am not some sort of hero. I have not been endowed on high with some sort of powers that make me any better at parenting two children with special needs than you would be if you were in the same circumstance. Like with anything with parenting, you learn as you go. You make mistakes. You cry, scream, swear and start over the next day. Saying that I’m some sort of hero puts me on an impossible pedestal that I don’t even care to be on. I am a normal mom in an abnormal situation. What I need you to say is, “How can I help?” This is the not-so-secret secret very few parents of children with disabilities will tell you: we aren’t perfect. This is hard. We need help. We need a break. We need sleep.

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If nothing else, a very simple, “You’re doing a great job!” goes a long, long way.

6. “____________ ” Way worse than saying any of the items from the list above is saying nothing at all. Autism can be a very isolating disability, for both the person with autism and the family members. It makes getting out and doing family activities or sports very hard. Socially speaking, we are taught and subsequently teach our kids to not stare at and to ignore someone who may be behaving in a way that seems weird. Not surprisingly, teaching someone to ignore a person that behaves differently a lot, ends up leaving that person ignored completely.

In writing this list, my greatest fear is that in telling you what not to say, it would make you afraid to say anything at all. That is the last thing I want from this. Most parents of children with disabilities are perfectly comfortable talking about our kids. We are every bit as proud of them and their accomplishments as you are of your children. Talk to us. Ask us questions. There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all.

About the writer

Lexi Sweatpants is a writer, wife and mother of four. Her middle son has autism, her daughter has Down syndrome. She has sleep deprivation and a deep passion for candy.  She writes about all of this and more at Lexistential.


DocD 3 months ago

In spite of a huge amount of money spent on research, the etiology of autism remains uncertain.
The rapid increase in incidence almost has to be related to the sea change in parenting style since prior generations, as a genetic cause in this short of time span is ridiculous, and no evil deep pockets corporate villain has been found.
During our grandparents time, many believed that kids should be seen and not heard, and the adults were put first, and were in charge.
Today, that has been reversed, and I have seen kids who boss their parents around. In addition, many parents walk on eggshells trying to create a perfect environment for their kids, shielding them completely from any pain or discomfort.
Perhaps this lack of stress robs them from any opportunity to develop normally, for a neurological standpoint.
In prior generations kids were hit or yelled at if they acted up, today that would be labeled child abuse. Some cases of so called high functioning autism might be explained by kids who have never experienced any stress or discipline, in other words “spoiled”. The relationship people have with their children is unrecognizable compared to just a few short generations ago, and kids and even infants can sense the power they have, as well as the fear their parents have of offending them in the slightest way. This situation is new in the history of mankind, and we are only beginning to see the effects as these kids reach their late teens and early 20s.
It is interesting the author feels empowered to tell others what to say to her about her child’s disease, a sort of entitlement in and of itself. A child raised with this social milieu, one of totally empowered “victim” might be more likely to be labeled as part of the ASD rage, as a secondary gain of special treatment and coddling from society at large might be expected.
I would suggest reading Frank McCourts “Angela’s Ashes”, about growing up during the great depression in Ireland. If you want to see an environment that did not create autism, as starvation was a more salient concern.

Anonymous 3 months ago

Great job!

Terrence Percy 3 months ago

Family – – your beloved siblings can be the most cruel. They often don’t offer support, only judgement. I have been greatly disappointed by my family, and have found nurturing refuge in the loving acceptance of other families that live with autism and “get it”.
Still makes me sad to realize that ‘family’ won’t ever really get it.

Norah 6 months ago

Very enlightening, thank you for a wonderful read.

Candy 6 months ago

I’m a mom of three children and my youngest has autistic traits and ADHD with a severe learning disability. My husband and I try our best to provide each of them with equal but different opportunities. We’re extremely busy driving our children to their activities and helping them with their music studies and homework. There are many appointments with specialists, the school, speech therapist or occupational therapist for our son with the disability. We are a regular family but with more challenges to deal with and perhaps a busier schedule.
My 9 year old son struggles academically and is delayed with his development. He has made great progress socially because of his fabulous teachers and educational assistants who have been extremely supportive and inclusive. He has great school friends who would always include him, invite him to their birthday parties and even request a play date. Kudos to these teachers and to the parents who are raising such good children to be accepting and kind. It has not been easy for our family to have a child with a disability but we have accepted it and such good people are helping our son and our family get through it. Thank you so much.

Kat 8 months ago

Thank you so much for this. It is wonderful to find a kindred spirit in the Autism Mommy Experience (sounds like a band!:) I really enjoy your blog and I am so grateful to find I am not alone. Thank you.

Thomas 8 months ago

I know mom’s do most of the work or all the work. But please don’t forget and the father’s who walk right along side the mom’s in these amazing times. I am a father of 3 special needs children and everyday is a new adventure for us.

And yes thank to to all the mom’s who do so much for there children. And for writing this article.

Hannah 8 months ago

Finally! I love this article, it just says it exactly as it is! Thank you thank you thank you!!!


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