When Marko was diagnosed with autism, I spent a lot of time stressing out. I wanted to know what this meant for my parenting. Where was the book that would tell me how to raise him? Where was the expert that was going to come and tell me what to do?
What I didn't realize right away was that I already had a leg up on any expert or book, because I had been raising him already for seven years. At this point, I've been raising an autistic kid for almost 13 years, and another one for six, and it's safe to say that I kinda know what I'm doing.
Especially as nobody else knows any better. Books exist, but some of them are dead wrong, and others simply can't tell you everything you need to know about your kid because the variation in autistic children is vast. I would argue it's much greater than the difference between a neurotypical kid and an autistic kid. I did read lots of books on autism, some of which seemed to be describing something very different than my kid, and some which had some helpful tips. Memoirs by autistic people actually helped the most, because what I really wanted to know was what was going through my child's head. When you know that, you can figure out what to do about it much more easily.
I could probably write a series of posts about this (and I might) but for today I just want to say: it's not complicated. It's just parenting. You have the same goals as other parents have, and while some of the tactics in standard parenting books will not work, plenty will. And that depends more on your kid than on whether they're autistic or not. Sensitive kids do not take well to yelling. Spirited kids hate to be told what to do. Some kids love when you joke around (Jackie does) and some will get more upset when you're silly (like Marko).
One of my main worries at the time was, do I try to change his autistic behaviors, or do I treat them as hard limits beyond which he can't grow? Should I be frantically trying to catch him up to his peers, or shrugging and watching them sail by?
In the end, it wasn't a helpful question. The real question is, which skills does an autistic child need and which behaviors are harmful? You should help them develop the skills they will need in life and guide them away from behaviors that harm themselves and others. Exactly like you do with other kids. But you need to have a lot of inner strength to stop yourself from comparing to peers, separating out the autistic side of your kid from the rest of the kid (you can't. your kid is your kid), or letting other people tell you to panic more. The person who tries to make you panic more is almost never a person giving you helpful advice. Either they're panicky themselves about autism, or they're trying to sell you something, but either way they clearly aren't here to help you.
Here are the three most vital skills I can think of for autistic kids. Though I am sure this is influenced by the specific ones I have; yours may be different.
1. Regulate their emotions
2. Detect and regulate their sensory needs
3. Communicate needs to others
These are skills everyone needs, and autistic children may struggle with them more than others. There are many other skills autistic children struggle with: speech, fine motor skills, stylish dressing, detecting sarcasm, etc. But many of these are kind of optional, when it comes down to it, or they will naturally be getting some help with them at school. If you have an autistic child, you need to let go of the idea of your child being cool in school. They may eventually develop their own brand of coolness, but it's not a thing you can make happen. If they struggle with speech or writing or numbers, go ahead and nab all the therapy that seems useful, but be aware that some autistic kids won't catch up to their peers on these. You just can't know.
But these three are going to be vital, and the bulk of teaching them is going to rest on you, the parent, because you are there in more situations, when the need for them arises.
Emotional regulation
Not every autistic child struggles with this, but it seems like most do. I have seen arguments that autistic children only melt down a lot because they're treated so much worse, but I don't think it's just that. I have a sample of two autistic kids and two neurotypical kids, and the autistic ones just freak out more about the same size problem. Apparently the emotion parts of the brain are straight-up bigger in autistic kids.
At the same time, I'm not going to just roll with a house full of unhappy screaming. Let alone the physical aggression and property damage. I want my kids to be able to meet their upset feelings and work their way through them. At the same time, I don't want them to become repressed or self-hating.
I think a lot of emotional regulation problems stem from not being able to detect and name emotions, so that's step one. "I am upset, this is what upset feels like." This lesson alone took us years. And then "I can pause between becoming angry and acting on it." And last, "I have strategies to calm myself down."
This is all a work in progress. As kids are growing, you're not getting to step three on every meltdown. My main efforts lately are stopping them from hurting anyone, eventually de-escalating, and bringing the child to a point of being able to reason again. This looks like taking the angry child to another room, sometimes distracting with a conversation about a topic they like or giving them time to read or play a game, and then talking through the issue. How did you feel when that happened? Do you think it helped to scream at him? What could we do instead? Let's go back downstairs and ask him if he would like to play the game later.
To that end, I also bargain with my kids a lot. I want them to know that no is not a hard wall they have to crash into and then melt down, but only a roadblock on one specific avenue. What if they could still get something they want? So, no ice cream today, but maybe we could put an ice cream date on the calendar. Or we could go home and have the ice cream in our freezer. Whatever.
And I never, ever set boundaries on the kids just for the heck of it. If there's no reason I can explain, well then I guess you can take a bath with your swimsuit on. You can go to school with your shirt on inside out. I'm going to encourage the whole underpants thing but that's not a hill I'm going to die on. With an autistic kid there are so many hills. You can't die on them all.
Sensory regulation
Everyone has a zone of sensory stimulation where they're happy. Maybe you're bored if you don't leave the house every day and you enjoy noisy parties, but after two hours of loud music you want to go home. Well, autistic people have a much narrower band of sensory comfort than other people. This may mean being over sensitive to some things, like textures or tastes or noise. But it also sometimes means they get twitchy and restless if they don't get to jump up and down, swing on things, or crash into the walls. So all the time you're working on giving your children the sensory things they need and protecting them from the ones they can't stand.
When your child is small, this is mostly your job. Your child can't communicate why that shirt is a bad shirt, but eventually you figure out it's tight on the armpits and go looking for shirts that aren't. You may learn how to bake veggies into muffins to avoid unpleasant textures, or give your kid hot sauce so there's a nice strong taste and they eat more food. It's a whole trial-and-error process. There's a growing market of items like ear defenders, seamless clothing, sensory swings, and compression garments to help autistic kids get into the zone where they're happy. There will be way fewer meltdowns this way, the child will be much more free to learn and relax and make friends and eat food when they are comfortable.
But while you're working on this, a lot of society is on the opposite track. They think sensory needs are a thing we fill for small children and have to train out of as they get older. Do they really need the headphones still? If they don't actively complain, we should take them away! And all that hand flapping or chewing on things is getting annoying, let's train them to stop.
The problem is that this strategy does not actually expand a child's zone of sensory comfort. It only gets them used to spending most of their time outside of it. They are under more stress, learn less, and are less happy. They may eat less and lose weight, but since they're a teenager now it's called an eating disorder instead of a sensory issue. They often melt down the second school is over.
It burns my cookies. Instead of transitioning to less sensory adaptation as children get older, we need to transition to children regulating their own sensory needs. They need to learn how comfort feels in their body and what tools they have to get there. I am 36 years old and I'm still working on "am I feeling listless because I am overwhelmed, or because I am bored?" If that's a struggle for me, it's obviously a struggle for a 12-year-old too. But it's so important to teach this, because at some point they'll be an adult and will need to keep themselves in their own sweet spot. And they may have to advocate for themselves about it. So at this age, we should be encouraging kids to understand their needs and ask for what they need. First from us, then from teachers and other adults. A child who can ask the teacher, "Can I please sit in the front, it is too loud in the back," is a child who will eventually grow up to say, "Can I work from home? I'm much more productive there."
Communicating Needs
This follows off the last one. Unfortunately autistic kids can sometimes be their own worst advocates. Some, of course, don't speak. Others can be amazingly articulate so teachers don't realize they don't know how to ask to use the bathroom.
I hardly know what advice to give, because communication difficulties vary so much and I'm only doing middling well at teaching this. Marko can ask to use the bathroom now, but he's constantly missing assignments in class and is terrified to ask the teacher for permission to turn them in late. A work in progress. And Jackie, for reasons I can't hope to understand, sometimes refuses to say "I would like some strawberry-kiwi juice, please," but will trace the letters SKJ on my stomach and expect the juice to arrive.
I think it's vital to accept every attempt at communication and encourage it. The last thing we want to teach is that efforts to communicate aren't worth it. We don't always know what is preventing a child from communicating in the way we might prefer. So refusing to comply until they communicate the way we want can result in the child getting frustrated and giving up. It is okay to become something of a telepath when it comes to our children's needs, detecting that "zzz" and a vague gesture toward the top cupboard means "raisins" or "I'm just going to change my clothes, no reason" means "I have had an accident and feel embarrassed, please play along." What we are teaching is that attempting to communicate is good and gets you things you want. Demanding "please" or clear enunciation often trips the stubbornness switch and they'll just climb on the counter and try to get their own dang chips.
When Marko was about four to seven years old, he refused to talk to any adults outside the family. He had a really pronounced stammer at the time, but even when it was important, he wouldn't even try. I finally found out--after years of this!--that he had noticed that adults in the family understood him when he spoke but adults outside the family often didn't, or didn't have the patience to let him finish his sentence. So he figured, why bother. It was considered "selective mutism" but what I call it is very sensibly saving his breath on people who might not listen. Once he went to school, he quickly overcame it because the adults at school asked him questions and waited and waited and when he finally did try answering, they listened patiently.
So always listen, even if the communication is a sign, gesture, tugging at you, sidelong vague passive-aggressive comments, whatever. And then after you've listened, you can suggest other ways. "You know, you can say 'strawberry kiwi juice' in words, I would have understood that one a lot faster." "Can you hand me your card next time instead of dragging on my body? I like that more." "Once upon a time, there was a little girl who peed her pants, and she decided to tell her mom, 'I had an accident, can you find me some fresh pants?' And her mom was not mad at all! The mom said, 'Thanks for telling me,' and got her some new pants." (This last is a real story that actually, to my shock, worked.)
When it comes to hard conversations, like talking to a teacher, our kids will need our coaching. I've sat by Marko and helped him draft emails to his teacher. I've sent him to go and talk to the counselor while also shooting off an email to the counselor saying, "I have sent Marko to you, please talk to him if he doesn't approach you." We don't expect our kids to be able to do things the first time without us holding their hands.
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This list is obviously not exhaustive. There are a heck of a lot of other important things to teach autistic kids. But these are my main focus right now. I know that my kids will be on the way to building their own successful lives if they master these skills. None of these skills have to do with being less autistic, and all of them are about achieving their own happiness.
In another post, I hope to write a list of general tips about managing autistic kids. There are so many things I've learned along the way that baffled me at first. Parenting autistic kids is not mainly a list of hacks (which is why I decided to leave the other one in drafts and publish this one first) but I'm pretty sure we all need more hacks.