Tag Archives: thoughtless comments

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”.