I have three daughters, two of whom happen to be on the autism spectrum. One has what used to be called Asperger’s before someone decided that’s no longer a thing, and the other has what’s currently being described as high-functioning autism. You probably wouldn’t know if you met them, because they, by all accounts, seem like normal kids. They’re happy and talkative, not at all like Rain Man or the kid from The Wizard who most people think of when they hear that my kids have been diagnosed with autism.
(By the way, a complete aside, but did you know that when the girl from The Wizard grew up she became the lead singer of Rilo Kiley? I discovered that band completely independently and that information blew me away at the time, even though it was apparently common knowledge that I wasn’t privy to. If you didn’t know either, you’re welcome. And if you haven’t listened to Rilo Kiley or any of Jenny Lewis’ solo albums, you ought to, because they’re awesome. But anyway.)
So, as will happen, I’ll occasionally get frustrated, because, frankly, parenting any kid is a tough job and parenting kids on the spectrum can try even the most kind hearted person’s patience. I’ll vent online, as you do. And well-intentioned people will come out and do their best to try to offer support, but inadvertently end up leaving me more upset than I started.
So I offer this as general advice for you, non-caretaker of kids with autism (or really, any special needs, for that matter). You will be naturally inclined, in a situation such as this, to say one of the two following sentences: “Oh, all kids are like that,” or, “Yeah, my kids do that all the time too.” And I’m asking you, on behalf of those parents: Please don’t.
The short explanation: They’re not, and they don’t. What you’re hearing that you think you can relate to is either much higher in intensity than the parent is able to describe or it’s just one of a dozen or a hundred battles the parent had to fight that day. Raising autistic kids doesn’t mean just dealing with a couple of odd behaviors that you can work around; it’s more like trying to traverse a minefield on a daily basis, just trying to get through a simple activity without triggering a meltdown because your actions deviated from what they expect to happen. That’s what’s exhausting, but that’s hard to convey and have someone who’s not also living through it understand, so instead it’s relayed as individual incidents, none of which sound all that bad on their own. And they’re not, really, but it’s the sum of all those parts that leads to exhaustion. It’s death by a thousand cuts.
The long explanation: Determining that your child has high functioning autism isn’t immediately obvious, even to the parents. We spent over a year with our oldest going through various early intervention programs, occupational therapy assessments, speech and physical therapy assessments, you name it, before we finally were referred to a pediatric neurologist for the diagnosis of Asperger’s. The problem with all of that, especially with your first child, is that you don’t have anything to compare to, because you don’t know how it is to raise a neurotypical kid. So there’s a lot of self doubt (not to mention externally imposed doubt from concerned friends and family members, more often than not) as you’re going through that process. Even when you ultimately get the official diagnosis, it’s not a particularly climactic resolution, because the doctors say things like, “It’s probably too early for a full diagnosis but…”
So even once you have the diagnosis for Asperger’s or high functioning autism, there’s always that voice in the back of your head making you question if you’re really doing the right thing for your child by going down this path. There’s enough uncertainty, even after getting the diagnosis, that you can still question things. I felt bad about describing my kids as autistic at first, because, well, they’re not that autistic, really, and they’re happy and they can tell us what they’re thinking most of the time and they’re totally not mute and the list goes on. I almost felt like an imposter, like how dare I go around saying I’m a parent of autistic kids when there are parents of kids who are way lower functioning than mine, who have it way tougher, so I should just suck it up and deal. It takes a long time to get past that point.
So while “all kids are like that” is generally coming from a good place, what it does is resurface all of that uncertainty and doubt, because it can make a parent question whether what they’re describing is really autistic behavior or just a kid having a tough day. You’re trying to reassure the parent that things aren’t that bad, and the kid seems pretty normal, because that’s probably what you think you’d want to hear if the roles were reversed. However, what I hear is, “Come on, they’re just normal kids. Stop overreacting.” And that starts the cycle of doubt and frustration and anger all over again. And what’s worse is that I’m not going to get mad at the person who’s saying this, even if I recognize why I’m feeling this way, because I ultimately know it’s intended to try to make me feel better and not as a criticism or an attack, so I’ll just bottle those feelings up inside. And maybe I’ll think twice about venting next time because I’ll feel like other people just don’t understand, and probably can’t understand.
So really, if you want to make a parent of autistic kids who’s confiding in you feel better? Just listen. You’re not going to fix anything by offering suggestions or trying to convince them that things aren’t that bad. Just be there and let them vent. That’s the best thing you can do.