What to say and not say to a parent that has a child with Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not sayDo not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism too?
  • Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid is defective
  • Your kid will grow out of it, right?
  • Autism? That’s like Rain Man, right?
  • It must be nice to get special funding or special help!
  • I hope my kids don’t end up like yours
  • You need to watch your kids better
  • Maybe you’re just bad parents
  • But all children do that
  • But your kid was so good for me
  • Referring to your child with a nickname such as “rain man” or “stimmer”

Yes, these are actual phrases I’ve heard or have heard second hand (parents told me someone said it to them). Ok, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say

  • You’re doing such a great job
  • I don’t know how you are able to do so much
  • Your child is progressing so well, you must be very proud
  • If I can help, just let me know.
  • I don’t know much about it but I’m willing to learn
  • I’ve read some studies, heard the news but I’d love to hear what you think

I’d love to hear from you. What have you heard or what would you like to hear? I’ll update this post with good suggestions.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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135 Responses to What to say and not say to a parent that has a child with Autism

  1. Ursula June 17, 2011 at 12:48 pm #

    Wake up wow, where you talking to me?

    Yes, my family seems ashamed of me, even though my friends (yes, I do have friends) say that I can pass for NT most of the time (it took a lot of hard work, and copying others to do that). And they (my friends) make allowances for me when I say something ‘rude’ without meaning to be rude, because, so they tell me, they know my heart and know I don’t mean it the way it comes out.

  2. KathyB June 17, 2011 at 1:08 pm #

    My son has Asperger’s Syndrome and the therapist he goes to has Autistic children there that I see while in the waiting room. I wish people would stop and think about what hurtful things they say and what they could say better, or even not say at all. I agree with your list. No my son doesn’t look like he has issues but he does and he is trying to overcome them. Thanks for the list, I am going to print it out and hand it to others when they make comments to me. I think that should say it all.

  3. D.D. June 17, 2011 at 1:52 pm #

    I have been a special education teacher for 17 years. I love working with my special needs students and I have learned so much from them. I teach students that are mainstreamed, but come to me for extra help or for resource.There is a variety of disabilities from learning disabled, emotional disturbance, cognitive disabilities, Autism. and Aspergers. I never understood how other adults could judge these children based on the fact that they were not the same as all the others. Comments such as: Well, if I give him a mark in class, he doesn’t care. My response is: Well, then figure out what he does care about-we don’t all come out of the same shell!

    In Feb. 2000, God blessed my husband and I with a son at the age of 38. We also have an older son that was 13 at the time. There were many behavior problems, tantrums, and other signs that something was wrong. Our older son was very calm and compliant and did well in school. I KNEW he needed help. Doctor after doctor said he was bipolar. He was self destructive and would hurt himself. He was hospitalized numerous times. People would tell me: If he was my child he’d get a beating. Finally-a doctor realized he has a neurological brain impairment and disorder to his left temporal lobe. He cannot understand receptive language and if continually asked to do a task and is not left alone, he acts out. I believe that God gave him to us as we love him no matter what and consider him to be normal-it’s the other people that are not! Ha! God has blessed you all with your special child because he knew you would care for them no matter what and that you would educate those that are afraid of differences. They think that they are “blessed” and that they are doing things “right” because their child does not have a disability. I believe it’s because God knows that they could not handle it. God bless you all and have a wonderful Father’s Day.

  4. MARY PLACE June 18, 2011 at 1:05 pm #

    I have a friend who is also an author. Birth Stories On Demand. She has 1 autistic daughter and 2 children (1 boy and 1 girl) that aren’t autistic. I know she would love to talk with you and your wife. She’s always looking for support and information regarding autism. Her name is Kelli Stapleton and her website is birthstoriesondemand. She has a wonderful outlook and a fabulous personality :) I suggest you find her and friend request. You won’t be sorry! She’s one of a kind and does everything she can for Izzy to give her a happy, healthy childhood. She’s also a dance teacher and taught Izzy a routine that her and Izzy did together at her recital. It was very heartwarming. lol I’m babbling, sorry.. But you may want to send her a request :)

  5. AnnaLaura Brown June 18, 2011 at 10:16 pm #

    Well said, I really wish people wouldn’t be so ignorant when it comes to autism. With more people like you and others we can change what people think and how they react.

  6. Venna June 22, 2011 at 9:04 pm #

    I think my most un-favorite was the old lady in the grocery store coming up, not saying anything to me, but yelling in my son’s face that he needed to be a good boy for mommy. Obviously her screaming at him made his meltdown much worse. I put my arm out in front of her to force her away from my son. She became offended at that and was about to say something else when I said to her, ass calmly as I could, “My son is not being bad, he has autism. He is overstimulated and yelling at him will make things worse. If you think you know better how to calm a meltdown in a child with autism who can’t deal with the noise, lights, or people around him, then please be my guest. If not, back off and don’t assume you know everything that’s going on.” I didn’t wait for a response because by this time I was so angry if she had said anything I might have punched her and I couldn’t afford to be arrested for assault on an elderly woman. The better part of that was the checker I went to saw/heard the whole exchange and was actually laughing when I got up to her. She told me that woman always tries to give other parents advice about their kids or tries to discipline the kids when she doesn’t feel the parents are doing it properly, but I’m the first one who’s ever told her off. I’ve only seen that old lady one other time since then. We made brief eye contact and I smiled, it was a good day for my son that day so he was happy and humming in the cart. She looked away and stalked off. She had clearly not learned anything.

  7. AutieMummy June 23, 2011 at 9:55 am #

    Love love love this post. I have 2 boys and OMG if I had a dollar for everytime someone said something stupid or hurtful to me about Autism I would be so so wealthy by now LOL. I guess for me the most common ones are “it must be on your side of the family now you have 2 boys with it” (ex MIL who’s other son went on to have a boy with Autism) and this one from my ignorant friend “so do you WANT to work” that cracks me up as she has said it more than twice, the fact I home school doesn’t seem to sway her! Or how about “Are you against abortion” and “Don’t they test you when your pregnant now to see if its gonna be Autistic?” and “At least they can’t talk back to you” hmmm yes I really did get that. My shop has a tshirt that reads “Autism is Not The Tragedy,Ignorance Is” and I love it, its just a nice way of getting the message through to people ;-)

    • Brendan August 24, 2013 at 4:41 am #

      Hi I would love to get in touch about your experiences. We to have two sons who both have autism. We have good days and bad days and would appreciate talking to someone in a similar situation. We are in New zealand.

  8. Yvonne Aitken June 24, 2011 at 5:45 pm #

    My son James is 8 and has ASD. I have wonderful neighbours and friends who all take James for what he is and love him dearly. However when i travel 300 miles to see my mother, she still tells him off and tells the rest of my family ‘she says it’s his autism but he knows what he’s doing’ and ‘one word from me and he does as he likes’ and then can’t wait for us to leave after two days. Hence now stay with my sister when i go to visit.
    Comments from other mothers in the park in the past ‘you should be keeping more of an eye on him if you know he’s like that’….like what!!! hes not like anything its called autism.
    Everyone in this world should be autistic, it would be a much be such a wonderful world to live in!!!

  9. Dawn June 26, 2011 at 7:11 pm #

    The worst thing anyone said to me was my FIL turned to me in a public place and said loudly, there is nothing more wrong with your son than he is a spoiled brat. Let’s just say I don’t let them have access to my kids much..

  10. Linda Petersen June 27, 2011 at 10:09 am #

    I have a niece that has aspergers. Unfortunately, out of frustration and concern for my niece, sister, and my two nephews, I have asked questions about her therapy and discipline. Since I have found out about my niece’s condition I have been to a lot of websites (including the Mayo Clinic) to educate myself on this condition. They all stated that children with aspergers need discipline like any other child and went on to talk about how to go about it. They also addressed the education of the child on how they can adapt and function in the world around them. I found this very enlightening and at the same time frightening because of this particular situation with my niece. I have seen her go from not being able to be touched, to not being able to let people near her, to complete melt downs that have involved violent outbursts that have caused physical damage to people and property. She no longer goes to school and is completing her education on-line. Do these things show progress? Or do they raise a red flag? I am very concerned for my niece. Ultimately, she’s the one who suffers from this. This affects the whole of the family. I wish my sister could have been forthcoming with specific information that would have helped everyone to understand their particular circumstances so we could all be a part of the solution. I have expressed my desire to help in any way I can and so have others in the family, however, my sister has refused to speak to me. She is communicating and trying to educate the family via facebook, since incidents that took place at my home this past Easter. I’ve apologized to her for what I’ve said and have let her know I’m here if she needs me, but I’ve gotten no response. I’ve tried to understand and be tolerant but my sister has shown no interest in letting anyone, professionally or otherwise, help. We live in Wisconsin and people have moved to this state because it does have the best educational and financial assistance programs for families with autistic children. I’m hoping at some point in time my sister will reach out to someone on a personal level so everyone involved can move forward.

  11. TwelvestringTrev July 2, 2011 at 1:51 pm #

    My dad says “He’s a spoiled bastard”. Mother said “He’s right”.
    Needless to say from the moment they said it they became ‘history’.
    That was 5 years ago!

    Sod them !

    Onwards and upwards !

    • me July 2, 2012 at 4:08 pm #

      ?

  12. Jessica July 10, 2011 at 7:53 pm #

    I once had a “friend” introduce me to her friend (the Aunt of an autistic child) saying my daughter was not really autistic, she just had bad tantrums. It happened a few years ago and it still makes my blood boil thinking about it.

  13. talfonso July 31, 2011 at 10:45 am #

    I have high-functioning autism, and I underwent screaming meltdowns from childhood all the way to high school. During the upper grades, boys would walk by and laugh at me for “acting ugly.” Grrrr.

    But the comments that surely diss me, though I had not heard it, and a lot of parents with ASD-afflicted children are the ones mentioning birth control or condoms. I saw videos of tantrums, ASD meltdowns or not, and some of the comments are like that!

    I imagine them being spurted out in real life as they stare at a kid banging his head and making those vocalizations they call “weird” because the overstimulation is too much!

  14. Jennifer January 10, 2012 at 2:34 pm #

    The comment I’m hearing most recently pertains to vaccines. “Oh….so he had a bad reaction to vaccines?” or “Wow, I read about vaccines doing that to kids”. Sorry, but my opinion on that topic is private. I’m not a health practitioner and I’m not about to discuss it in the middle of the mall.

    I’ve also heard “Are your other children normal?”

    And, my favorite, “So he’s really smart, right? Like genius smart?”

  15. Gav January 12, 2012 at 2:07 pm #

    I’m a 41 year old man who was diagnosed with asperger’s syndrome in my mid-30s. All through my life I’ve been told that I’m disruptive, undisciplined (bearing in mind I alphabetise just about everything I had trouble hearing that) and after diagnosis nothing changed. I had a eureka moment and was happy to have a new path to explore (CBT for misdiagnosed depression doesn’t work very well for aspergers) but the people who tried to drag me down didn’t change. I was still disruptive and undisciplined but the verdict was I was clever. Clever enough to fool medics into giving me a diagnosis. I had a defective personality and I needed to accept it. That’s what I was told. That, actually, was depressing. Sorry if I’m rambling, it’s just so many of those statements rang true to me. I’m nearly 42 and I’m still an autistic child; I get very tired trying not to be.

  16. Carrie February 20, 2012 at 10:33 am #

    I have three autistic children and I am alwats told “they dont look autistic” or “all kids do that” when i am trying to explain what it is. It so frusterating and hurts my feelings ,because it makes me feel like they think im lying.

    Carrie Kowaliuk

    • Qaiser August 4, 2012 at 2:32 pm #

      Dear Carrie!
      M father of two autistic sons. I fully understand what you are saying as i have been through this. Once my boss saw my son in good mood and he never believed that my son had any problem. Infact, people are to be told that it is not a physical handicapped problem, rather much complex disorder that each child differs from others and they have different issues and talents.
      There is also a need to realize that even normal kids do so many wrong things but we (affected parents) don’t realize till the time we observe normal children doing wrong things. You should be happy to listen such comments because to me it is your hardwork and countless efforts that your kids do not have those signs and symptoms which make them distinguished by mere observation; I know its very very big achievement……

      My salutes for you!
      Good Luck!

    • Shawn March 31, 2014 at 1:20 am #

      I tell parents all the time,”you are the teacher of teachers..” I do not know if that helps but we all are. ” The world will change. Thank you for efforts. I look up to you!

  17. Susan June 4, 2012 at 2:37 pm #

    People can and do say outrageously ignorant and hurtful things. Your list is one–much needed– way of sensitizing people to how their words affect families with children who are autistic. It may also be helpful to give families a list of responses. For instance, one of my daughters is frequently hurt by things people say. I tell her I can’t publish a list and distribute it to the world telling everyone what they should and shouldn’t say but I can help you respond in a way that is empowering. Our responses have the power to educate. It might even be cool to have handy a little booklet or postcard with FAQs to share when the occasion arises.

  18. T.D. June 22, 2012 at 1:24 pm #

    Sounds just like a problem I had recently…We were at a party and the step-grandmother of an autistic child, no less, told ME that I had the two most undisciplined children she had ever seen (apparently she was drunk off her rocker. still no excuse for the crap she began to spout at me before people pulled her away). My son, PDD-NOS was a little better behaved than her “grandson” who was just really going out of his way to misbehave. She was mad that my son wanted to go see the animals inside the house…Anyway. her comment upset me so much and caught me off guard…what do you say to such a remark? Her son apologized repeatedly to me and I said, “Don’t be sorry, you didn’t say it”. Of course after we got home I thought of great remarks, but it would have been pointless, as I said she was drunk. I just hate ignorant people who think they are high and mighty because they don’t have to deal with what we deal with on a daily basis.

  19. Paula June 25, 2012 at 10:22 pm #

    I’m an ABA therapist and a sibling of an autistic adult. I’ve been asked many times “what’s your brothers talent?” In my reply, I give a rough estimate of how many autistic people I’ve met in my life time. Then I tell them how many savants I’ve met. ONE! Quite the change in facial expression.

  20. wpmonica September 29, 2012 at 1:56 am #

    This is really a great challenge for every parents. But this is a time where our principles and even faith are being tested. My friend recommend me this product called PHP from maxamlabs.com where it is intended to help replenish and restore proper immune and gut bacterial functionality beyond the standard probiotic formula.

  21. caleb72 November 16, 2012 at 3:48 pm #

    Absolutely fantastic post. As someone very new to this, I can relate so much to what you have said here. Thank you!

  22. Jon Gilbert December 29, 2012 at 12:41 pm #

    I addressed this same issue on my own blog. The worst for me? “God only gives you what you can handle.”

    Here’s a link to the post: http://thesamechild.blogspot.com/2009/09/autism-things-some-people-say-part-ii.html

  23. Beckah February 12, 2013 at 11:05 am #

    The very first doctor I brought my daughter to nearly 7 years ago had the nerve to tell me that my daughter was ‘just a brat’ and didn’t have autism because at this appointment she took simple directions from this physician- something she hadn’t done before. I can’t express my dissatisfaction with the doctor. She was later diagnosed at The Mayo clinic and is 10 now- she is not a brat at all!

  24. Rebecca June 24, 2013 at 10:40 pm #

    I sometimes wished people would not call my son the “autistic” one. Its part of him… yes…. but I dont need to hear them tag him with such a word that is too often derived as a negative name calling. It is a disease… and it afftects each person differently. There are mulititudes of autism spectrums. Its not something that someone is going to catch if they touch him, or play with him… or even if they accidently drink after him. I one time wished someone would learn and understand this disease before they open their mouth and blurt such a tag as “autistic.”

    • steph July 23, 2014 at 4:57 am #

      If you want them to stop acting like they’ll catch it it might be best not to call it a disease. It’s a disorder (Autism Spectrum Disorder)…it’s not degrading you in some way, it’s a dysfunction (and gift) in your life. There are many disorders in this world, this one just happens to affect mannerisms which causes people to feel put off by it, but it is still just a disorder that varies from person to person. Autistic is not a tag, it is how your son’s brain operates and that is who he is. You need to accept it before others do. Autism creates disorder but it also can bloom beauty and growth in the autistic person and their family Autism is not bad word. Stop listening to Autism Speaks, because it sure doesn’t speak through that organization.

  25. Lainie September 22, 2013 at 12:11 am #

    Just found your site and love it! A few things we have heard, and granted we are new to this as my son was recently diagnosed at 3 1/2. “I knew he was autistic but did not want to be the one to tell you.”, “I cant believe you ever leave the house.”, yeah that is just great. The other day my son Caleb was freaking out in the car because a helicopter flew over when we were waiting by the school to pick up my oldest daughter. I quickly rolled up the windows and turned on classical music as that’s what comes him down. Another mom, who knows Caleb is autistic, says “That is just what kids do sometimes, he its not autistic.” My reply being, “I’m sorry but most kids don’t scream and start beating their ears and biting themselves over a helicopter flying over.” And then just today we were walking through the grocery store and I had Caleb and his twin sister on backpack leashes. This is necessary for two really good reasons 1) Caleb runs off and hides in dark places in crowds and does not respond to his name 2) I have four kids 5 and under and it is impossible to go in four directions at once. So anyway, as we are making our way down the isles, Caleb on edge and toe walking and hitting his hands together, this man walks by us and says “This is so (expletive that starts with F) hilarious” and laughs out loud at us. Needless to say I returned to the van and cried.

    What I would like to hear, and do hear on occasion ” What a beautiful family!”, “Your kids are all really neat.”, “I don’t know how you do it, but you do it great!”

    Thanks for what you are doing here! I am really enjoying your posts :)

  26. Maggie March 5, 2014 at 2:59 pm #

    I have heard the rain man one before and that my son was just spoiled wise up people this hurts the parent. It’s difficult enough without states and rude comments and no my child doesn’t have autism stamped on his head but people need to be more observant and think before they speak.

  27. Trying hard May 27, 2014 at 5:37 pm #

    Received custody of grandson 5 months ago. Had not spent more than two or three days with him at a time due to foster care placement. His behavior is terrible. Poops pants repeatedly. Drinks till he can aim and pee anywhere. At first I thought it was adjustment disorder. He was never this bad during our visits. Then I thought he was being beat up by older brother who always wanted to wrestle. Then I caught him banging his head. Biting himself and squatting down in backyard to poop his pants. Over the weekend we went to my stepsons house and he was horrible. We were trying so hard to keep him on good behavior that when his older brother jumped in their swimming pool he had to be gotten out. We told the kids no pool till after lunch but as I was attending to kitchen and grandchildren while the adults apparently went to smoke pot. The kids followed the adults to the pool and my daughter slipped off side of pool and had to be pulled out too. I don’t do drugs and did not realize they all were high and drunk. An argument insued and we will not be returning. My daughter in law posted on line that people who can handle kids should not have them. No shit. We did not have them. We are grandparents to their sisters kids. And my other daughters on laws brother is autistic as well. But like every case his is handled differently. He sleeps 22 hours a day he is so heavily medicated. During all this I was the only one that made sure he ate. Every body was so busy taking about our handling of grandson and drinking that my son in law went into a mocking rant during the night. I had to leave. Did I mention the other high drunk parents were letting theirs kids ride dirt bikes with no protective gear. We had not been there in months knew they drank but this was an out of control mess. I spoke my mind was called a physco bitch. I know now that even people you think would of help don’t. I put grandson down for bed early cut off his drinking to avoid peering on their couch and when I said no more to drink. I was horrible for not letting him have water. I thought I could count on my family to help support and understand but know now I can’t. He is autistic. Even people with autistic children have a superiority complex.

  28. Pauly October 2, 2014 at 2:12 pm #

    I’ve heard the, “god only gives you what you can handle” and the “is your other child normal?” But I have to say my fav was from a good friend that really didn’t mean anything by it. She mentioned something that her son had done (I can’t remember what) and my wife said that our son, Landon, had done the same. Her reply was, “yeah but my son is smart!” She is a good friend and would never hurt a fly. Sometimes people are just boneheads and say things without intention. I am guilty of the same thing on a daily basis:) I guess that as parents of an Autistic child we have to have thick skin and pick our battles carefully. A total stranger would get both barrels but we’ll forgive our friend…sort of:)

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  1. What to say and not say to a parent that has a child with Autism | Stuart Duncan | Devina Divecha. Journalist. - June 14, 2011

    [...] What to say and not say to a parent that has a child with Autism [...]

  2. Worth a Few Minutes | Adventures in Aspieland - May 30, 2013

    [...] can surely be seen as hurtful when they are made about your child.  For the complete entry, click here.  Here is what he shared for things that people should not say to a parent of a child with [...]

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