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What Not to Say to the Parent of an Autistic Child

by Sally Willbanks
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What Not to Say to the Parent of an Autistic Child

I thought I’d write a post about what not to say to the parent of an autistic child.  When someone tells you their child is autistic, you have to respond, as silence is rude and not a good option. Here are some things you should not say, followed by some ideas of things you might like to say.

 

Don’t say:

 

“I’m sorry”

 

My child is nothing to be sorry about!  Yes, being the parent of an autistic child is challenging and can be a daily struggle, however, my child is not some creature with no hope, no future and only a burden on me!  My child is a person in his own right: a beautiful, incredible person with sensory and communication differences.  He is simply different and born into a world that doesn’t accommodate him.  No matter how well-intentioned your apology, it is unnecessary (and inappropriate).  When you apologise, it implies that we need sympathy, which is not the case.

 

“I thought something was wrong with him”

 

There is nothing wrong with my child.  He is actually just the way he should be.  He was born with a differently wired brain in a world that does not accommodate him.

 

“I don’t know how you do it.”

 

I am no superhero.  I try to be the best mother I can be.  I have no choice but to “do it”.  And you would do it too if you were in my position.  You learn as you go, and yes, the learning curve can be steep.  But I love being a mother, and I love my son just as he is.

 

“Is your child a savant?”

 

Not all autistic people are savants; in fact, only 10% of autistics would be considered geniuses.  Autistic people can be intellectually delayed, be of normal intelligence, or be gifted, just as in the general neurotypical population.

 

“Your child doesn’t look autistic.  You’d never know!”

 

Autism does not have a look.  Some autistic people are noticeable because they are non-verbal, and some autistic people stim a lot in public which is a sign.  Apart from that, autistic people look just like neurotypicals.

 

“He’s just a boy, he’s developing more slowly and that’s normal for his age.”

 

Parents of autistic kids generally know when their children are different or struggling with developmental milestones.  It is dismissive to say these kinds of things to parents, because, yes, some behaviours might be ‘normal’, but usually it is a whole slew of behaviours that have set off warning bells.

 

“Oh, my child does that too.”

 

Once again, this is dismissive to both the parent and the autistic child.  Sure, all children struggle with certain things, but when you tell me that your son or daughter also behaves a certain way or does a certain thing, you are completely negating everything my child and I go through.  Your child might cry sometimes when his socks get wrinkled.  But does your child go through seven pairs of socks to find the perfect one, all the while screaming, crying, punching, berating, writhing on the floor, refusing to leave and ending in tears, EVERY SINGLE TIME?!  He probably doesn’t…

 

“God doesn’t give you what you can’t handle.”

 

To me this is just a vacuous statement like “Everything happens for reason.”  Also, what choice do I have?  Whether I fall apart or not, I cannot walk away.

 

“I know because my next door neighbour’s child is autistic.”

 

All autistic people are different, and there is no one who knows my son better than I do.  When a child is diagnosed with autism, most parents go through a period of intense research.  I am still researching and learning years after my son was identified as autistic, and I can tell you that he is unique. 

 

“He’ll grow out of this.”

 

No one knows what the future holds for my child.  No one knows how the skill levels of autistic people change as they get older.  I am sure that in some ways my son will mature and things will get easier for him, but I’m also sure that as the demands of life get more difficult, he will struggle more in some areas.  Only time will tell.

 

“Everyone’s a little bit autistic.”

 

No, they’re not.  Some people might have sensory difficulties.  Some people might struggle with conversations or be an introvert.  But to be autistic you have to meet a certain set of criteria, and it is incorrect to say that everyone is.  It is like saying everyone is a little bit diabetic.  It’s just not true.

 

“He just needs more discipline.”

 

Over the years we have tried a million different techniques (often wrongly so!).  You cannot discipline autistic behaviors out of autistic people.  If an autistic person is having a meltdown, they are not being naughty, they are overwhelmed.  This is true even when the behavior is aggressive.  What they need is not discipline but compassion, empathy and to feel safe.

 

“Have you tried gluten free?  Dairy free?  ACC (or whatever protocol you want to insert)?”

 

It is true that some special diets have helped some autistic people, and that some protocols might have some benefits.  There are some harmless protocols (like taking fish oil) that may be beneficial, but there are also some very dangerous protocols out there.  As stated earlier, all autistic people are different, and what works for one might not work for another.  Pushing unsolicited advice on already stressed parents doesn’t help, no matter your intentions.

 

“Will he ever go to college?  How about get a job?”

 

My son’s future is unknown.  I’m sure if he wants to go to college or get a job, he will find a way.  With the right supports, he can do anything.

 

“Don’t play the autism card.”

 

There is no ‘autism card’.  My son is autistic, and this cannot be separated from his identity.  Everything he does is under the influence of his autistic brain, so I WILL explain away any behavior others might find offensive.  He is not being naughty, he is autistic.

 

“Sorry, I didn’t invite you guys, I thought he wouldn’t be comfortable.”

 

My son loves socializing as much as the next child!  Please don’t leave him out of events that he would enjoy because you are not sure how he would go.  Instead, ask what you can do to make him comfortable, or at the very least, give me the invite so I can make accommodations.

 

“They didn’t have autism in my day.”

 

Yes, they did.  Autistic people were misdiagnosed and underdiagnosed, and the people who were struggling the most were institutionalized.  Let’s be thankful that the diagnostic procedures are improving all the time so more people aren’t falling through the cracks.

 

“Just don’t give him other food, he’ll eat eventually.  He’s not going to starve.”

 

Yes, he will.  Autistic people often don’t have very good interoceptive awareness and don’t recognise their own hunger signals.  Add to this the ‘picky eating’ that goes along with autism, and you have a much bigger issue on your hands than a child who doesn’t like to eat certain things.  An autistic child’s ‘picky eating’ is not about personal preference and food dislikes.  It is about extremely narrow food selections, ritualistic eating behaviours, entire categories of food being refused, smells being too strong, textures being wrong and causing gagging, and meal-time tantrums.  They simply won’t eat until they feel safe in their environment and eating a food they like.

 

And last but not least, “You need to make more time for yourself!”

 

While this is well-meaning advice, I have found it is not helpful, because it is simply not possible.  I run my own business, I homeschool two neurodivergent children, I carry the emotional burden of my family, and then there’s housework…Making more time is an impossibility (at least without help) for the moment.

 

 

Here are some things you might like to say instead:

 

“Is there anything I can do to help out?”

 

“I’m here if you need to talk.”

 

“I’d like to help out to give you a break.”

 

“Here, I’ve made you some soup.”

 

“How is he/she doing?”

 

“How are you doing?”

 

“Would your child like to come play with mine?”

 

“Tell me about autism.  How is he different?”

 

And most importantly, “I brought wine!”

 

Also, please don’t judge!  Parents of autistic children carry a heavy weight.  There are amazing joys, highs and lows, just like there are with parenting neurotypical kids, but until you walk in our shoes, there is no way you can understand.  Kindness and thoughtfulness go a long way. 

 

Thank you for taking the time to read this, it is appreciated!

 

by Sally Willbanks

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