10 Things Not to Say to an Autism Mom
April is Autism Acceptance Month. In our society, we’re shifting the focus from awareness of autism to acceptance of people with autism—their differences and unique abilities. But let’s not forget to accept ourselves, their parents. We have our own differences as caregivers, and our own unique abilities in raising our special children.
Some days are good. Some days are good enough. And some days we’ll need to simply write off and start over tomorrow. Oftentimes what can trigger those last set of days are the off-hand remarks of well-meaning acquaintances or strangers. In this post, we rounded up the top comments from the most popular posts on this topic. Instead of focusing on how you can respond in those situations, we’ve suggested ‘notes to self’ instead. Helpful reminders that you can refer to calmly, and with a good dose of compassion for yourself.
1. He doesn’t look autistic
This one comes in different flavors: “He’s too verbal.” “She’s too social.” “He makes too much eye contact.” Let’s unpack what’s actually being said. Most of the time it’s a backhanded compliment that my child passes as “normal”, which is both offensive and off-putting. Whatever the case may be, we’re often left feeling awkwardly speechless.
Note to self: Sometimes my child will appear neuro-typical and other times not. There’s no way to ‘look autistic’ and there’s no goal for how they should look. I’m learning to feel comfortable with whatever they bring to the table, so that I can respond at my best.
2. Autism wasn’t as common a few years ago
This comment can relate to the first, if the person doubts the diagnosis or maybe thinks that as a society we’re prone to over-labeling things. While it’s true that autism diagnoses have risen in the last 20 years, that’s because it was often kept out of the public eye or misdiagnosed. Research has helped us understand autism better and provides supportive insight, such as the importance of early intervention for managing it more effectively. Awareness is what leads to acceptance.
Note to self: To paraphrase Jasmien Lorelei, AKA ‘Autism Mommy’, an official diagnosis is often required to access many of the beneficial intervention therapies and techniques. I would be doing my child a disservice if I chose to not obtain a diagnosis.
3. Did you vaccinate?
Despite a lack of any scientific evidence, some people believe that autism is caused by vaccines. Whether intended or not, simply asking can imply a certain amount of blame towards autism parents who do vaccinate. And it’s not a recipe for fruitful communication. Most of us are much less guided by rationality than we’d like to admit, and people have all kinds of beliefs that run counter to science. If you’re generally interested in hearing another person’s perspective, go ahead and debate. But bear in mind that you’re unlikely to sway their position even if you do point to scientific evidence.
Note to self: I don’t feel the need to defend or accept any blame for my parenting decisions—especially not from someone outside my support network.
4. Have you tried the latest autism diet?
The idea that certain diets can help alleviate autism symptoms is a controversial one. Again, there is no scientific evidence to support the claims that special diets can help autistic individuals, though some parents of autistic children report that their child’s symptoms improved after starting a special diet. The gluten-free, casein-free diet is one of the most popular diets claimed to help with autism. The ketogenic diet is another—particularly for kids prone to seizures. If you’re like most parents of children with autism, you probably have already researched this topic extensively for yourself or even tested it out. So getting advice from people who might assume you didn’t can come across as patronizing or judgmental. We might be stretched thinner than most parents, but we don’t live under rocks.
Note to self: Even though most of the advice I get will be irrelevant (and sometimes annoying), I won’t let that prevent me from being open to new information.
5. Is your child a savant?
“Actually, less than 10% of those diagnosed with autism have savant qualities”, says The Autism Site. “Without meaning to, this question often makes us feel like autism is only acceptable if he or she were extraordinarily gifted.” These kinds of statements are also a slippery slope into unnecessary comparisons that only leave everyone feeling deflated.
Note to self: I let myself and my child off the hook from needing to be recognized as extraordinary in any way. Just being alive is extraordinary enough.
6. I know what you’re going through, my (fill-in-the-distant-relation’s kid) has autism too…
We know you’re trying to be empathetic and relate. And we appreciate it. So trust us when we say that you don’t understand what it’s like to raise an autistic child unless you’ve really been there—day in, day out. Like the Dunning-Kruger effect, you don’t know what you don’t know. And oftentimes we’ll just nod and smile and won’t bother pointing this out because we don’t want to break the sense of empathy you’d like to convey. In the end, it just defeats the purpose creating a real sense of connection.
Note to self: The more aware I am of how I really feel in any given moment, the easier it is for me to share what I really feel.
7. Are you making enough time for yourself?
We know that we need to make time for ourselves. Every parent knows. And if we’re not making enough time for ourselves then having someone else point it out only makes us feel worse. “‘Yep, there’s another thing that I’m not on top of.” Unless you’re prepared to babysit (and assuming our children would feel comfortable with that) this question doesn’t do anyone any good.
Note to self: Unlike when someone else asks, checking in with myself regularly to make sure I’m prioritizing self-care is actually really helpful.
8. Everything happens for the best…
It’s hard to categorize this one because it can hit you differently depending on so many factors: The recency of the diagnosis; Your upbringing and spiritual beliefs; The way you managed your child’s meltdown this morning. Like most cliches, this can be both absolutely true and completely meaningless at the same time. You get to decide how to interpret things or how much you can handle. And like autism, it’s a spectrum.
Note to self: I let myself feel the range of emotions and experiences that come with being an autism parent—good and bad.
9. I hear the divorce rate for parents of kids with autism is 80%
Where should we begin with this one? Firstly, by saying that it’s fake news. The divorce rates are similar among all married couples in the US, regardless if an autistic child is involved. But even if it was higher for autism parents, it’s baffling that so many people feel comfortable asking this question given how personal it is.
Note to self: It’s one thing to help raise acceptance through awareness, but I don’t have to answer questions that are personal or make me feel uncomfortable.
10. Silence – When you don’t say anything
As much as insensitive remarks can be hurtful, blatant silence is worse. It leaves us to conjecture in our minds what you might be thinking and how you’re probably judging us and our children. So if you don’t know what to say and are afraid to commit an autism comment faux pas —it’s better to go ahead and ask! We’re prepared. 🧘
AngelSense Assistive Technology helps you strike a balance between safe independence for your child with autism and peace of mind for yourself. We know because we’ve been there ourselves. This month and every month, AngelSense will continue to develop Assistive Technology solutions that improve the lives of everyone in the autism community.