As a mom of an 11-year-old girl with autism spectrum disorder (ASD), I’ve encountered plenty of stereotypes and assumptions about this developmental disability that according to the CDC, affects 1 in 44 children. On the other hand, sometimes people are so afraid to ask questions and feel the need to tiptoe around me and my daughter. But when we bring disability into the spotlight and recognize the amazing contributions of our community, everyone benefits. Keeping in mind that all kids are different, here are some things we parents want you to know.
17 Things Parents of Children on the Autism Spectrum Want You to Know
1. Autism is not what you see in the movies and TV
While some kids on the spectrum may have unique abilities most of our kiddos are not counting cards in Vegas casinos like Rain Man. And while there are some who may grow up to be like The Good Doctor, many other kids are struggling to learn the very basics like independent toileting, using words to communicate and avoiding self-injurious behavior. It’s easy to portray the “quirkier” “high functioning” side of autism, but for those of us who have kids more acutely affected this is not real life.
2. But sometimes they do get it right….
When Sesame Street introduced the character Julia (a Muppet with autism), I felt seen! Like Julia, my girl also loves to have friends and play, but in her own unique way. What a wonderful way for kids to understand that there are people with differences but that at the end of the day we all want the same things—to have friends and play and be accepted!
3. Our kids are not “being bad”
If you see a mom with an out-of-control kid at Target, please think twice before criticizing. For parents of kids on the spectrum, an outing like this is rife with potentially terrifying scenarios—our kid running away, having an accident, pulling down items or breaking them. When we’re out in the community a smile is so much more helpful than an eye roll—because you never know what someone is dealing with.
4. You can’t see all disabilities
My daughter has no outward physical features that would clue you in to the fact that she has a disability. I’ve had friends question whether anything is “really wrong” since on Facebook she’s smiling and looking at the camera in photos. But as we know, a social media pic does not tell the whole story.
5. Don’t dismiss their differences
On the same note, I’ve had friends say that they also don’t feel like being social or answering people sometimes. While this was meant well, it’s really not the same thing and downplaying the fact that a kid is struggling with these important areas of life due to differences in her brain isn’t helpful.
6. We love it when you ask questions
That is, if you’re asking from a genuine place of curiosity and not judgement. It’s OK to talk about disability and autism!
7. Autism looks different in different people
Not all kids on the spectrum are picky eaters. Or interested in trains. But some are! The point is that the different “symptoms” just don’t apply to everyone.
8. Kids want to be included
Even if my daughter doesn’t respond in a neurotypical way, she still loves to play and have fun and be part of the group. Invite her to parties, include her in play dates. It may not look like what you’re used to—but it could be an opportunity to forge a friendship unlike any other.
9. Autism affects girls, too
But autism can look very different in girls, and it is less prevalent (research has found that boys are four times more likely than girls to be diagnosed with ASD). While boys may have repetitive, aggressive behaviors, girls on the spectrum are often (but not always) quiet and can too easily fade into the background. Their autism can go undiagnosed as girls are more likely to be labeled “quiet” or “shy” when there is really a cognitive disfunction going on.
10. Autism isn’t a trend
Don’t say you’re “on the spectrum” because you feel awkward at parties. Yes, some people with autism may be socially awkward, but autism goes much deeper than this, and it’s belittling for people to take up the diagnosis as something fashionable.
11. Consider using person-first language
People with autism have different preferences but we say our daughter “has autism” rather than “is autistic.” That’s because autism is just one part of who she is—she is not her diagnosis. (Although it’s worth noting that some people actually prefer identity-first language—when in doubt, ask!)
12. Don’t call people “special”
As a parent I’m also learning which terms people with autism prefer (for example, many prefer to take ownership of the word “disability” over “special needs” which feels outdated and has a negative connotation). As I recently learned, people with disabilities don’t want to be singled out as “special” or separate. Their basic human needs are the same—they just may need help with access.
13. People with autism understand what you’re saying
Many with ASD have strong receptive language skills, even if they don’t have much expressive language. As my daughter got older, I quickly realized it felt really wrong to talk about her in front of her like she wasn’t there. So please don’t do this!
14. Things can seem loud and overwhelming
We avoid the hand dryers in public bathrooms because to my daughter, they are so much louder than I can imagine (and I dislike the sound of them, too!). This sensory overload is part of autism for many people—and there are great tools and strategies out there to help regulate the senses.
15. Don’t forget about the adults
There’s lots of focus on little kids with autism, but the fact is that kids with autism grow up to be adults with autism. The services for this population are limited and we need to do more to make sure that all people have the chance to live full, productive lives and be a part of society.
16. You can help
Donating money and going on walks is great. But if you know someone with a child that has autism, take the time to get to know the kid. Engage with them. Learn their likes and dislikes and make an effort to connect. And if it’s hard, keep trying! Parents with kids on the spectrum need all the support they can get. And the more people that believe in that child the better chance they’ll have of thriving.
17. Your kid can benefit from knowing our kids
The benefits go both ways. Our kiddos get to practice social interaction and get a boost of confidence knowing they are included. But your child can learn something too from a friend with ASD – how to communicate in a different way, how to recognize the qualities of a person that are under the surface, how to have empathy and kindness (not pity!). Hopefully they will become adults who take this knowledge into their future to create a world that’s truly inclusive.