The Impact of Words: Talking to Parents of Autistic Kids

As a child growing up, I always heard the phrase "sticks and stones may break my bones but words can never hurt me". And while this is a useful strategy to help grow thick skin for kids who might be teased in school, it is actually not true. Words do hurt, and it's important to be mindful when communicating with parents about their children - and even more so if the child has developmental disabilities.

I know that most people mean well, and ask questions or otherwise try to engage in conversations about Becca and her Autism because they truly want to understand and they truly want to help. However, genuine as the intention may be, sometimes the questions or comments lack sensitivity and can be perceived as misguided and ignorant at best or insensitive and mean at worst. In both cases, they are uncalled for.

So how can we engage in conversations that are supportive and respectful of one another's experiences? Here is a list of things not to say.

1. "But she's so smart!" There is a common misconception that Autism and Intellectual Disability (ID) are one in the same, but they are not. Autism has nothing to do with intelligence, and many Autistic people actually have higher than average IQs. Becca may not be able to communicate verbally yet, but anyone who has spent five minutes interacting with her knows how smart she is. Pointing it out as a counterexample to her Autism implies that Autistic people can't be smart.

   
   

2. "Did you vaccinate?" Vaccination is a subject of great debate within the Autism community - specifically whether the rise in Autism cases can be attributed to childhood vaccines. Whether intended or not, asking this question can imply a certain amount of blame towards parents who do vaccinate. And it’s not a recipe for fruitful communication.
   

3. "What special abilities does she have?" I'm not quite sure what this question means. If this is referring to savant qualities, a very small percentage of Autistic individuals are actual savants. And this question assumes that her Autism is only acceptable or valid if it comes with some sort of special ability. Nobody would think to ask this question of a parent with a neurotypical child but yet somehow it's acceptable when the child is Autistic?
   

4. "My friend's child is Autistic, but she put in the work and now he is thriving and was able to go into General Education." This comment is not helpful at all. It is meant to convey a sense of hope that one day Becca will be verbal and may not need special education services, but it implies that we are not "putting in the work" the way that this other parent did. It is important to remember that each person is an individual, with individual needs, and develops on his or her own timeline. We put in an incredible amount of work with Becca and we have seen a lot of progress over the last few years. And we are hopeful that one day Becca will be verbal and that she can one day go into a general education program, but even if she has to rely on alternate means of communication, it doesn't mean that she isn't thriving. There are multiple ways to measure progress - and Becca is happy, healthy, learning, and growing in multiple ways.
   

5. "You just have to be strong with her." Autism is not caused by being soft on your child. Autism is a social communication disorder that is present from birth. Autistic meltdowns are not the same as temper tantrums and you can't discipline them away. You actually have to soothe your child through them since they are caused by over-stimulation and anxiety. "Being stronger" will actually make the issue worse.

   
   

   Also - the person making this comment is the same kind of person who would say something like "just leave her with me for a week and she will come back straightened out" - as if that person knows more about my child than I do. I am not obligated to answer to anyone about why I interact with my child the way that I do, especially when that person clearly has no understanding of Autism or my child.

   
   

6. "You must have undiagnosed Autism in your family." Trying to get to the root of where the Autism came from is not only irrelevant, it isn't helpful. Whether the Autism came from my maternal age, or medications, or undiagnosed Autism on either side of the family, the Autism is there regardless. The truth is that nobody definitively knows what causes Autism, and knowing where it came from changes nothing about who Becca is or how we interact with her or how we teach her or anything else of note. So she's Autistic. Who cares where it came from? I certainly don't. And neither should anybody else.
   

7. "Have you tried [insert product name here]?" There are so many products out there on the market that claim that within a month of using them your child will start talking, or that within three weeks of taking a masterclass your child will be potty trained, or all sorts of other claims. They claim that specific diets will reduce meltdowns or behavior issues or will completely reverse their Autism symptoms. Understand that we as parents of Autistic children spend a great deal of time researching products, curricula, schools, diets, and interventions. By the time this question comes to us, we have probably researched that specific product and all its variations extensively and have made our decisions. I, personally, am extremely careful when deciding on any products or supplements for Becca.  I feel that many of these products prey on the feelings of desperation and guilt of Autism families, and they charge a lot of money to deliver strategies and interventions that you can find for free using a few Google searches. Caveat emptor - let the buyer beware! Do your research before paying thousands of dollars a year for interventions that really shouldn't be behind a pay wall.

   
   

8. "Does she know that you're her mother?" Ummm...what? There's just no good reason for this question.

Though the specific questions may not always be appropriate, I am grateful to anyone who is looking to genuinely connect with Becca and learn about how best to interact with her. We always appreciate the support, and look forward to being able to engage in productive and respectful conversations that celebrate Becca and how wonderful she truly is.