Speak No Evil: 8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids

Nosiness isn't any more attractive in you.

1.  “Are you planning to have any more children?”  Hmm.  Are you planning to have sex tonight?  Why people ask such personal questions of strangers or acquaintances is unknown to me.  But even if you are acquainted well enough with someone to discuss future children, think about it before asking the parents of an autistic child.  Lightning can strike in the same place twice.  This is a deeply personal issue for some of us.  Statistically, we are more likely than not to have any future children not affected by ASD.  But the risk is higher.  And the ASD affecting another child could be more severe.  Yet, we may want our children to have siblings.  We may want more children to love.  We may always feel the loss of a child we had expected to one day have but choose not to after considerable thought.  Parents of ASD kids do not need your opinion on this issue – unless we ask for it.  Besides, we happen to love our ASD kids and may not find them quite the tragedy some would have us believe.

Moving in with us? Then, no, free advice is unwelcome.

2.  “What are you going to do to about such and such behavior of his?”  Well, are you referring to stimming behaviors?  Because he can’t stop those behaviors any more than breathing.  It’s who he is.  Stimming fulfills a need.  If the stimming behavior is harmful or dangerous, then that obviously needs to be addressed and replaced with a safer one.  But some kind of stimming will happen no matter what, if the child needs it.  If you are asking about his refusal to speak, socialize, or observe social conventions, then your question is a loaded one.  One that is answerable only by the child’s ASD severity, temperament, and possibly years of intervention.  Unless you plan to quit your job, obtain a degree in behavior analysis, sell your home and move in to become a permanent ABA coach, it’s best to avoid leading questions and insinuations such as this one.  With all due respect, you may not have all the information you need to discuss or judge this.

"As long as I'm living, my baby you'll be." - from Love You Forever

3.  “She is so lucky that you love her so much and that she has you for a parent.”  Please take a moment and think about what you are suggesting.  Don’t all children deserve the love of their parents?  If a child – through no fault of their own – is born with some physical or mental imperfection, should she have to accept a reduced level of parental love and pride?  Children are owed love, pride, and affection by their very birth — not luck.  If you wish to dole out compliments, why not simply tell us how cute or sweet our kids are or that you think we are good moms and dads?  That works for parents of all kids.

Our babies are just as precious to us -- no matter what side of the vaccination debate we take.

4.  “Did you vaccinate your child?”  The very fact that you would ask this question means that you are divided into one of two very opinionated camps.  The first being the Vaccinations-Are-the-Sole-Sause-of-Autism-and-What-a-Shame-You-Signed-Off-to-Do-This-Thereby-Causing-Your-Own-Child’s-Autism.  The second being the I-Hope-You-Aren’t-Some-Stupid-Whacko-Who-Is-So-Irresponsible-as-to-Not-Protect-Your-Own-Child-from-Disease-Therefore-You-Shouldn’t-Be-Allowed-to-Even-Be-a-Parent.  Parents of autistic kids get jumped all the time with this question.  Don’t ask it.  You force us to either confront our own regrets or justify our choices to a disapproving audience.  Both scenarios stink.

If there really was an instant cure for autism, don't you think it would have actually made the evening news? The polio vaccine certainly did.

5.  “You should go to such and such a doctor or try this who/what CURED some Random Person I Read About in a Magazine’s kid.”   Even supporters of DAN treatment and dietary intervention (GFCF), don’t usually claim a total cure.  After all, a total cure would mean the dietary intervention is no longer necessary.  Instead, some parents have reported improvements in their children’s symptoms and interaction.  Some significant improvements.  And some non-existent ones.  Many of us have tried it and abandoned it due to lack of results.  Many of us support biomedical treatment and are happy with the results. Some of us have tried other regimens and therapies with varying results.  Again, you force the parent into justifying their choices.  I promise you – promise you – we’ve all heard of biomedical and other treatments for autism.   And made our decisions on the issue based upon our own research and instincts — long before you read that magazine article or talked to your friend’s cousin twice removed.

Would that we all could see into the future...

6.  “When is he going to talk?  Will she be able to read?  Will he be self-sufficient?  Will she ever be able to marry?”  Honestly, we don’t know.  Autistic kids do things on their own timetables, sometimes years after their typical peers.  Some will go on to college and raising families.  Some will live on their own with minimal assistance.  Some will require life-long care.  These are the questions that haunt parents of autistic children.  These are the questions that wake us up at night and steal joy from the here and now.  Please don’t remind us of our worries.  It serves no purpose to be reminded of what we cannot control.  Look inside your heart and consider your purpose in asking such questions.  Curiosity isn’t a good justification.  Instead, simply ask how our children are doing, though you might get a longer answer than you were hoping for.  If things are looking up, you can be assured we’ll enthusiastically brag about it.  If they aren’t, you won’t have asked us questions we cannot answer.

No. I promise you. No matter what, you could and you would.

7.  “I couldn’t do what you do.  I could never handle it.  God gave you this child for a reason.”  I know you mean well.  But, really, if your child had been born with physical or mental challenges, would you have abandoned him?  Of course not.  We didn’t volunteer for this, nor did we volunteer our child for the difficulties he faces.  And some of us take exception to the idea that God did this to any child.  I don’t think the suggestion that God inflicts any difficulty or malady on defenseless children speaks too well for Him, does it?  Autism happens.  It happens to children.  And it happens to the parents who love them.  You would have loved your child just as much had it happened to you.  If you want to tell me you think I’m doing a great job,  thanks for the encouragement.  But if you convince me that you wouldn’t do the same for your own child, then I don’t think I would like you very much.  And I wouldn’t believe you anyway.  I think you would walk through the very same fire for your precious child as I would for mine.  Really.  Have a little more faith in the power of love.

If your expression resembles this when speaking to a parent of an autistic child, go someplace else until you can control it. Really.

8.  The Look of Tragedy.  Believe it or not, the Look of Tragedy is a statement in itself.  You might think that your expression of sadness and devastation isn’t obvious, but it is.  If you are overwhelmed with sadness for us or our children, just wipe that expression right off your face.  Why?  Because it hurts.  Practice it in the mirror if necessary.  But the Look of Tragedy is the worst thing to say of all.  It says that someone has looked at our situation and sees it as hopeless.  Trust me, hope is a very precious thing for special needs families.  Please don’t endanger ours.

“You people are awfully sensitive.  So what can I say?”  We know you probably mean well.  But sometimes the thoughts we don’t want others to hear come through loud and clear in the things we say.  When people or their loved ones have obvious physical or mental differences, they hear the same thoughtless comments repeated to them for years.   This can make you overly sensitive to be sure.  However, I firmly believe that most people are good and don’t want to be hurtful to others.  I believe that, if shown how a simple statement can be needlessly upsetting to others, that most people will stop saying it.

Here are some things you can safely say:

“I love you.”

“How are you?  How is your family?”

“Is there something I could do to help?  How about if I….”

“You are a great mom (dad).”

You really can’t go wrong with these.  With any parent of any child.  :)

If you enjoyed this post, you might also like:  “Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store” or “So You’re Wondering If Your Child Might Be Autistic”.

You might also enjoy:  “What to Say to the Parents of a Baby with Down Syndrome: Dos and Don’ts”.  

32 thoughts on “Speak No Evil: 8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids

  1. Sarah

    One should simply never ask the question “Are you planning to have more children” of pretty much anyone – well, except maybe your spouse ;). You never know who’s silently struggling with a fertility issue or who is trying and just had a miscarriage they didn’t plan telling anyone besides their spouse about, etc. or any other number of medical conditions they worry may or may not be hereditary that the may or may not be public about.

    I don’t think parents of kids on the spectrum have a more or less of a reason to get offended by this question – it’s extremely rude. Period.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I agree. I think it is offensive to anyone – hence the “Are you planning to have sex tonight?” reference. But I do think that it is an additional reason such a question is upsetting to parents of special needs kids. Good friends and family are often more likely to ask this question of ASD parents and feel more free to do so, I think. At least that has been my experience. I’ve been asked the question multiple times. I still think it is different than your best friend asking if you want to one day have children vs. her asking if you are going to have more following an ASD diagnosis. One is chit-chat and the other is leading. At least that how it feels to me… :)

  2. Kelly

    I love all of these cause I hear them….but how about…

    “I’m so sorry you have children like this.”

    I hate this statement. IN FACT, I’m extremely lucky to have children like I have…

    Kelly

  3. aefountain

    #7 absolutely brings the worst out of me. It ties in with “God wouldn’t give me more than I can handle”.

    Yes actually the God I was brought up to believe in gave me much more than I could handle. He didn’t carry me, I did. There were moments in my life, I felt like Atlas carrying the world on his shoulders, except I had Jupiter and Mars as well.

    God didn’t give me strength either. I gave myself strength, along with some wonderful human beings around me.

    One of the things that helped me get through my old belief to my new belief is “Why bad things happen to Good people”. This book helped me process all the crap my mother taught me.

    For those that wish to believe in God, that is a good thing for YOU. However, I don’t and I am tired of being judged because of it. Apparently, that is why I have a son with severe mental disabilities, is because I don’t believe . May I remind those, that theory in itself is going to come up and bite you in the proverbial butt at some point in your life.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      That book was profound for me as well. Even more so Harold Kushner’s How Good Do We Have to Be?. Read that one. So cathartic for those of us raised in faith-damaging religions. I believe now. But not for the reasons I was originally given. :)

  4. Marlene

    I have probably heard all those comments over the 38 years I’ve parented my son who has autism, except for the question of whether or not I planned on having more children. What is missing here is the question many of us adoptive parents get: “why don’t you give him back?”; or, “Did you ever think of giving him back?” I kid you not, these are the questions I have most frequently heard over the years. As a parent of an older child having autism, I realized that others have had little to no experience with ‘disability’ to begin, and the term ‘autism’ has only in the recent decade become visible. Not so long ago professionals considered autism to be a psychological disorder. My son was once looked at under such scrutiny. When he was growning up we didn’t know another person with autism, surely none living in the community/mainstream of life. I concluded long ago that my job, as a parent, was not only to raise my son as best I could, but to also educate society. I became a professional in the field to help my son, as well as to help society understand better. Though a parent may not enter higher education for this, each can play a role in teaching others the lessions of our unique personal experience, or what others have not experienced first hand.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I had an audible intake of breath upon reading that. Give him back?! I’m having to restrain myself from saying something inappropriate. How awful. On day, those individuals will hear their comments repeated back to them while standing in line for Heaven. At least I hope so. I would be sorely disappointed with any other scenario. Grr…

      1. Jennifer Davis Ewing

        I once read about a woman who had a very comfortable upper-middle class lifestyle, who decided adopting a son would be the perfect “accessory”. She brought the eight-year-old back to the adoption agency after he “ruined” her white carpeting and white furniture by tracking dirt inside. No wonder she hadn’t had children of her own!

  5. Lisa Clark

    One that I love is my youngest son does not have any issues, because he does not act like my oldest son. Not every child on the Autism Spectrum acts just like my son. That is like assuming every child acts alike. Make no assumptions about anything.
    After all mother knows best.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      It’s all in the tone, isn’t it? Totally different when someone says, “I believe God has planned good things for you.” The other sounds like a Dr. Evil type God to those having to hear that their misfortune was deliberate.

  6. Molly

    I like most of this post but I have to disagree with the “your child is so lucky to have you has a parent”. My brother had Autism (low functioning) and yes, he was lucky to have my parents. There are children with special needs who aren’t so lucky. Yes, every child should be in a loving home, and every child, regardless of their needs, is lucky if they have loving, caring, competent parents. But when a child has special needs and they have a parent who can meet those needs, they’re extra lucky. There are special needs children who are in horrible situations. Not all parents rise to the occasion.

  7. Jim Reeve

    One of my favourites is “Does he have something wrong with him?” Usually I respond with “Yes, but at least he has common sense.” Most people don’t get it.

  8. Ashley Hughes

    I have heard every single one of these multiple times. I grew up in a very religious home, and hear the “God has a plan” & “God wouldn’t give you more then you can handle” I really dislike it when people say those things. I just cannot get over it. Oh and the He is lucky to have you….that gets me every time. Yes I care, but I agree with you, all parents should care. I know that they all don’t, but they should.

    Oh and how about I am sorry that you are going thru this. I hear I am sorry all the time. Don’t say you are sorry. You didn’t do it. I didn’t do it. I am just venting. I need to vent. I also don’t need to be teased because I sleep when my child sleeps. If he is taking a nap I do too! I am tired, everyday of therapy and school takes a lot out of me. I need to be the best that I can be for him. The people that tease me, I tell them they could handle my job. I have the best children in the world and to tell me how sorry that you are for me, my family, and for my son. REALLY MAKES ME MAD. My Grandma actually appologized for my son one day, being the way that he is. I just walked off. I didn’t even know how to not scream and start throwing punches. I realize that people don’t know what to do, or what to say.

    That is why I love your blog so much. You take the words right out of my mouth. Oh and when is he going to talk…If I knew I would be so excited for that day. I cannot tell the future. No, this isn’t going to go away. He may never talk. I don’t know. Then come the reasureances of he will, he will. I told my mom the other day. You know what, you have to live in reality, I am doing everything that I can to help him talk, to help him get to the point that maybe he will be able to live on his own, take care of himself. But I also have to be proud and so excited for every little accomplishment that he has everyday or I am going to be sad. So deal with the fact that he may not, he just may not, and that is okay. It has to be, because I am proud of him just the way he is.

    1. Jule Dragstrem

      I am just glad that people are interested and take the time to learn by asking questions. I overheard an old lady with purple(dye job) hair and wearing a polyester pants suit refer to my son as “the little retarded boy.” Yes, I could have gotten angry and told her what I thought. As I looked around, I noticed everyone was pointing at her dye job and pants suit. No one was even looking at my son. She said that statement out of ignorance, not out of spite. Someone taught her to feel sorry for families like ours. I’ll be honest, my nephew is special needs. When he was around 10, I didn’t know how to act around him. I was uncomfortable. Now, my son is special needs. I am just getting the learning curve I should have discovered way back then. I just think, I used to be that ignorant, too.

      1. Marlene

        Jule…I appreciate your being honest with yourself and others. At some point we just have to rise above the ignorance and hear it for what it is. Then take a moment to respond to the ignorance in a way that best helps others learn some important lessons.Over the years I have looked into many an ignorant eye, those who question my adopting a son who happens to have autism, or those who express sorrow for his condition… to them I say: ” My son has autism; despite the difficulties we face, he is one of the greatest blessings in my life; he is the one who has taught me the greatest lifetime lessons in terms of what is really important, what matters, and he is the one who has deepened my understanding of human development, overall. I am deeply grateful for having him and experiences ‘unique’ of ‘him’. I think such responses send out some ‘food for thought’.

  9. Kim

    We’re a bit different in that we adopted children with special needs. We also hear most of these statements. In addition we get all the nosy adoption questions, “Their parents were pretty bad, huh?” or “Were they all drug babies?” Followed by the “You’re SAINTS to ‘take in’ those kids. They’re SO LUCKY to have you!” “I could never take another person’s child.”

    Snarky me wants to reply, “Well then, it’s a good thing you haven’t, huh?” but I don’t. I smile (because this is, after all, the 400,000th time I’ve had this exact conversation and all its permutations) and remark on how blessed we are to have our wonderful children. (Put THAT in your pipe and smoke it!) :p

  10. Nancy

    Actually none of these questions offend me personally. I’d rather people ask questions than pretend they know everything. Sometimes, we all ask dumb questions when it’s a topic we know very little about. If people don’t ask for fear of offending, they’ll never learn; and I want them to learn.

  11. JayKay

    People ask/say stupid things any time a child is even slightly different. My daughter is of mixed ancestry and I hear the dumbest things from the mouths of strangers. I can only imagine what parents with special needs children go through. Society once placed such an ugly stigma on mothers of autistic children, so I’m sure these people mean well. While their statements and questions are insensitive, many times they come from a place of true ignorance and they rarely mean any harm or disrespect. Once you begin to see these people as woefully clueless and uneducated about autism instead of cruel, soulless jerks, their comments will seem like nothing more than the mindless drivel of the uninformed.

  12. GG

    “I love you.”

    “How are you? How is your family?”

    “Is there something I could do to help? How about if I….”

    “You are a great mom”

  13. Robert Woodford

    made me chuckle – the things people say. Add to that when people say in front of you to pregnant person “as long as it’s healthy” WTF – and if it’s not you are goign to do what. Makes me mad.

  14. Ann Bledsoe

    I loved this, and I thought it’s so sad that WE are the only ones who will read it. So I posted it on my FB page along with my own personal favorite-“How long will he live with you?” – a polite way of asking me when I willl be institutionalizing my son. I received immediate and enthusiastic feedback from my friends with adult children with disabilities and complete silence from everyone else. It was soooo cool. Thanks for the inspiration.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks for visiting. Our kids have different challenges, but I believe special needs parents speak the same language. Your children are beautiful, and so is your blog. :)

  15. Storm Dweller

    Oh the vaccination one is a bone of contention for me. The first time someone asked me that, and I with a puzzled look told them of course my children were vaccinated, to then have them tell me that was what made my daughter Autistic… I about blew a gasket. What a stupid thing to do, to blame a parent for their child’s “illness,” (which is a term I take exception to since my child is not ill, at least not to me) when it’s already so haunting not to know what genetic factors on either my side or her father’s contributed. And the dietary and controversial therapy solutions debates probably set me off just as quickly. I do not claim to be a perfect parent, nor do I claim that I always get it right. But I do know that suggestions and inferments bred just out of those two topics from someone who cares nothing for my child are down right insulting. They ignore simple facts, such as Autism existed before vaccinations ever did, that genetics have a large role to play in the varying degrees of Autism, and that parents who care about their child are constantly seeking ways to help that child have the best life possible. I know first hand that there are people who have children and do not parent or care for them, but it is unlikely that they are the ones engaging these discussions. And the comments about God… even my own well meaning mother told me that God picked the perfect mom for all three of my children, and I stood there thinking, “What the hell does that even mean? I chose to have children. I chose the partner that I had those children with. Considering how that marriage worked out, I don’t think God was really given a say in the matter.” And if I’m considered the perfect mom for these kids, God better be standing by to help them, because I fall short more often than not.

  16. Storm Dweller

    Oh and the “Are you planning on having more children” question is another pet peeve, to which I usually respond, “Yep. A dozen. That’s why I went and had my tubes tied last year.” I didn’t need anyone’s input to tell me that our family’s struggles are challenging enough without adding to the financial strain of having another child, which has nothing to do with whether or not that child would fall on the Spectrum. The consideration of possibly having another child with Autism is an afterthought, and a selfish one, that no, I am not personally able to deal with the dynamic of another child that falls on the spectrum. I only have so much sanity to go around, and so therefor the fair and responsible thing in MY case is to look to the care of the children I already have.

  17. Jenny Saul-Avila

    I love the “”She is so lucky that you love her so much and that she has you for a parent.” I get stuff like that a lot lately. What is hard about this for me (as well as the old phrase “you aren’t given more than you can handle”) is that I totally feel like I can’t handle this a whole lot of the time. I have a really negative mantra in my head sometimes that says, “I was not cut out for this.” Yes, I will do everything I can possibly think of for my son – but sometimes I am nearly hyper-ventilating while he’s having a meltdown, sometimes I break down nearly hysterically crying at the same time, sometimes I just have to scream & then feel even more like dirt after – so remembering all my beloved friends & family telling me how lucky my child is to have me & all the people who believe that you are not given more than i can handle just make me feel worse. And don’t even get me started on “Everything happens for a reason.”
    Some cliches just have to die.

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