The Secret to Connecting With My Autistic Son
Personal Perspective: How I figure out what's bothering him and how to help.
Posted January 30, 2023 | Reviewed by Devon Frye
- I've learned that when my autistic son has an outburst or meltdown, we must summon our empathy. Our focus must not be on making him stop.
- When he is upset, we must listen wisely to find the key to calming him.
- Our response must be "can do," not "we can't." We have to find an acceptable replacement activity to offer him.
- We must amp up our enthusiasm. He will know when someone is just seeing him as a burden, a collection of behaviors.
Nat’s group home supervisor called me the other night. Nat had just had a terrible meltdown. It sounded horrible: screaming and slapping his head hard. He scratched a housemate. I was so sad for him, for all of them because I know Nat loves his group home and his housemates. But sometimes something’s gotta give.
Right away I thought: “It’s January.” Nat has always had difficult winters. One recent winter he had daily self-injury and screaming, so much so that we moved him out of that living arrangement and kept him home with us for months until something new opened up.
Another winter, he cracked a window with his head. He was fine; he had been in a rocking chair but was rocking out of control. Then there was the winter when he was ten, and was expelled for behaviors. And there was the time fifteen years ago, and that led to us moving him into his school residence.
The behavior is back. But it is not the same. We are not the same. We know Nat so much better now, at 33.
And Nat knows so much more about the world—enough to know that winter here in New England is as cruel as it is long. Dark, freezing nights. Long, boring days where being outside feels raw and sometimes painful. We find it a struggle to do anything because the tight cold air grabs us by the throat and inertia pins us down. So it is natural to stay inside.
But Nat is an outdoorsman. A veteran of seven-mile walks during the COVID era. A guy who learned rock climbing in Colorado. There is only so much treadmill someone like that can tolerate.
Because of that, people in his life often need to get really creative to keep the peace. He loves calendars and schedules—but the problem is when there’s just not enough to put on a schedule. Nat’s group home supervisor wanted to know what we would recommend to help him feel engaged during this relentless season.
How to engage Nat. The age-old question. As a toddler, the answer was to play chase, peek-a-boo, read stories, sing songs.
But one by one, those interests dropped off or morphed into something else. Now he will sing in his rock band, loudly and confidently. But when we play the same songs at home, he sits silently, unless we ask him to sing.
If left on his own, I believe he would sit on the couch or in his room, for hours, only doing something active if we ask him to. So most of the time, Nat presents a great passivity to the world.
Unless it is one of those winter phases. Then the question is not only what else does Nat love, but how can we keep him calm. Sometimes the answer is a lot of activity, a lot of, “Nat, let’s go on a walk!” or “Nat, let’s ride bikes!” If you ask in just the right way, he will do it. The right way means you have to really mean it. And if it is too cold, you will not be able to offer him that.
Nat will not be patronized or duped. He knows when people view him as a job and when people really want to be with him. It makes a huge difference to him. In other words, you really have to care; you can't fake it.
When Nat is home with us, the issue we usually face is the passive, silent Nat, who responds to bonafide invitations to play. But if we are met with anger or frustration and outbursts, the solution is to listen carefully.
Then, try to tease apart what he is saying. Sometimes he expresses his irritation with a word that is not actually what is bothering him. You have to go over what you know about his likes and dislikes, and then guess. You have to guide him to tell you the right word that will unlock what is upsetting him.
Once you realize what is actually causing him distress—usually, it is that the expected activity is not happening—you must find an acceptable replacement of equal value. So if we cannot bake after lunch, maybe the substitute activity is to bake very early in the day, or just before dinner. Or go for ice cream. So in that case, the golden nugget of his agitation is he wants to do something that results in a sweet treat.
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I explain all of this to the people who work with Nat and find that I am reassuring them as well. I tell them, “This kind of behavior often happens in the winter, when the light outdoors is wan and brief, and when the indoors is boring.”
But I also tell them that they have to amp up their interactions with him so that he believes they really care. To successfully lead Nat out of a rage, you have to connect with him by finding that one revealing word, and then you have to bargain a solution with him.
You have to want to succeed. But if your focus is to make him stop, you will likely fail. You have to want him to feel relief and happiness. It has to be about him or it won’t work. In other words, you have to care, and if you do, that will shine forth from you, and he will see it. After all, he’s only human; he needs connection like all of us, but on his own terms.
Like all of us.