By Leo, of Autism Blues
A Fortunate Slip of the Lip
I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:
“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”
“Dad? What does ‘autistic’ mean?”
My heart sank. It was probably the first time he ever heard himself described as autistic.
It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)
No Good Opportunity.
You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)
So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to.
He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works.
So there didn’t seem to be any need to explain autism to him. (Squawk!!)
Stumbling into The Talk.
Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question.
I brought him into our room along with Katie, and asked him, “What did you hear me say?”
“You said I was autistic and I have empathy.”
“That’s right. Do you know what empathy means?” (I was stalling for time.)
“No.”
“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”
“Okay. What about autistic?”
I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”
O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.
Autism Is. . .
So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.
“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”
“Yeah.”
“Any questions?”
“No. Can I go type on the computer now?”
“Sure thing. Knock yourself out.”
No Drama.
And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.
In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.
I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.
No Big Deal.
So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.
It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.
That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!
*
Leo is one of my favorite autism dads. You can find more stories about his family on his blog "Autism Blues" . He also runs a Autism Blues Facebook community
Leo and his wife Katie live in Maryland with their six children, ages 6 to 15, all of whom are on the autism spectrum. Yes you read that right! Six children on the spectrum. I am truly inspired by their humor and grace as they parent their six children.
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago