My son Walker is four-years-old and on the autism spectrum. He is the silliest, sweetest little dude you will ever meet. He loves Trolls, StoryBots and being in any kind of water. My boy isn’t a fan of wearing pants or hearing the word no. Sure, he has some special needs, but he’s pretty much the epitome of four.
His behavior doesn’t always tick all the boxes that a lot of people think of when they hear the word autistic. Walker has a significant speech and language delay, but, after a lot of therapy, hard work and practice, he uses language all day long now. He also uses a lot of gestures, which isn’t the case for a lot of autistic kiddos. He might not speak as you’d expect a four-year-old to speak, but he communicates clearly.
If you met Walker, you might be tempted to comment about how he doesn’t fit your idea of what an autistic kiddo should be like. It has happened countless times.
Um, hi. Please don’t do that. Just keep any and all thoughts about whether he “seems autistic” firmly planted in your own brain. Regardless of your intention, they are not compliments. They’re frustrating, and really hard to correct in the moment.
We hear the same three things over and over, and while I totally understand why they seem like positive things to say, when it comes to my kid, these kinds of comments aren’t really compliments.
“He seems normal.”
What you mean: “He looks like any other kid to me.”
What my son and I hear: “Kids with disabilities aren’t normal.”
Yikes. This is the worst well-intentioned comment we get on the reg. Walker is normal. Autistic is his normal. Autism can be disabling for some individuals, (and society can be disabling for some autistic individuals) but have we forgotten that disabled people are normal, too? We have to stop defining normal as physically and neurologically perfect. (Or none of us would qualify.)
Walker is atypical, but he’s not abnormal. Abnormal implies that a person’s value is somehow diminished or they are ‘less than’ a typical kid. That couldn’t be further from the truth.
(Side note: Like many people with speech and language differences, Walker can understand almost every word you say. I’d really love to not have to explain why people act so surprised when they realize he is a “regular kid” with some differences.)
“He’s obviously high-functioning.”
What you mean: “On observation, he seems to be as self-sufficient and flexible as a neurotypical kid.”
What I hear: “I don’t understand how much support he needs to succeed.”
Functioning labels (high or low functioning) aren’t useful for autistic people, and can be offensive and harmful. More often than not, functioning labels describe how someone else perceives the autistic individual’s ability to appear neurotypical. They rarely describe how the autistic person experiences the world. The level of support an autistic person needs to be comfortable and successful can’t be determined by taking a quick look at them and deciding how well you think they function in a world made for neurotypical people.
This holds true for many disabilities. Unless you are on that person’s team, making professional decisions for them, you just don’t know how they function or what it takes for them to succeed, and you shouldn’t speculate about it.
“He has mild autism.”
What you mean: He isn’t really that autistic. He’s just a little autistic.
What I hear: “I don’t understand how the spectrum works, or how hard he works to do things that come easily to neurotypical kids.”
The autism spectrum isn’t really a scale of mild to severe. That’s overly simplistic, and it’s just not how it works. You either are or are not autistic. The spectrum refers to the wide array of traits that a person might embody if they are autistic. Some of those traits are more likely to affect daily functioning and self-sufficiency than others.
An autistic adult once told me something that has stuck with me: “You can’t be mildly pregnant. You are or you aren’t. But you can be pregnant and feel basically the way you usually do, or pregnant and so consumed with the feelings that nothing else matters (like with severe morning sickness or when you’re in labor). The same goes for autism. You can’t be mildly autistic, but you can be autistic and feel a lot like neurotypical people feel, or autistic and so affected by it that it colors every moment of your life.”
Special needs come in a million “flavors.” Calling them mild might be well-intentioned, but it’s just not necessary or possible for an onlooker to decide that.
I know this might all sound picky and complicated.
Someone will inevitably call me a snowflake or tell me I’m too sensitive and I’m overthinking this. I’m used to it. But I’m not being too sensitive. I’m just sticking up for my boy.
I know that people who say these things to us mean well. I’m not a monster who can’t give people any grace, and I don’t think people who say things like this are awful jerks. But, I do think there’s room for us to improve, so it’s worthy of being discussed and brought out in the open.
What you’re trying to do is reassure me that you think my kid is awesome. You want to make it clear that you can see his strengths, and recognize that he is bright and funny and sweet. I appreciate that you can see everything good in Walker, and I really appreciate when people include him and let him decide what he feels comfortable doing.
I am not trying to make it complicated or suggesting that you just shouldn’t comment about my kid at all. I’m inviting you to learn how to speak more carefully about kids with special needs. My mom heart will never stop trying to make the world kinder to people with atypical neurology.
It’s great to give a kid with special needs a compliment or a high five when they do something brave or awesome. I just need to make sure you understand that kids like Walker aren’t bright and funny and sweet despite their special needs. Special needs are part of what makes a person who they are.
Autism is part of Walker, and if you don’t see his differences, you don’t see him.
When you adamantly deemphasize the ways that Walker differs from his typical peers, all I hear is that you probably won’t be able to provide him with the grace and accommodations he needs to be successful. We don’t have to discuss autism every two minutes; it’s just really frustrating when people purposely downplay it in a misguided attempt to reassure us.
You can tell my kid he is awesome without diminishing his differences. They’re part of him that will never change, and if you are going to be in his life, you have to embrace them, go with his flow, and see where the journey takes you.
If you’re willing to do that, please come sit with us. We are figuring it out as we go, and we would love the company.