Artist & Writer, San Francisco Bay Area

What They Know: Neurodiverse Siblings

My boys, looking out at the Smokey Mountains, at the Appalachian Trail, Summer 2013

I can’t read their minds about how they feel about each other. I see their expressions or hear the yelling, watch the retreat into quietness or the surrender after a dispute, but I can’t tell what each is thinking or feeling. I have clues, but what can I really know? They are my sons, but I can’t guess what’s happening under the surface.
One is autistic, and one is something else.
One is loud, talkative, and dependent upon the stability of people around him. He can misunderstand what people say, can read bad intention into innocent mistakes, and can react passionately from hot to cold to hot in one afternoon. The connections he makes can be instant but he’ll remember them forever. Being highly perceptive, however, if he senses a lack of heart, he won’t give his. He loves people and he talks about growing up to be rich enough to help the homeless and the elderly. He always sees them, doesn’t overlook them. He is sensitive to his environment and needs things to be just so. He notices tiny changes in things he sees, smells, tastes and touches. He is creative, dynamic, hilarious, and irreverent. He’ll make you laugh and just when you think that’s it, he surprises you with the funniest out of the box thing. He’s an avid youtube watcher. When he finds a book he likes (rare) (usually graphic novels), he’s all in. When he finds something he likes, he loves it. If he doesn’t like something… he can’t stand it. He loves to have fun, spending time with his friends, and any kind of celebration. Although it gets complicated because of his anxiety and being autistic (high functioning in some ways, low functioning in others), he loves life. Ideally, sans anxiety & sensory issues, his happy place is being where the action with the people he loves, making them laugh and eating good food.
The other is quiet, internal, and independent, always expecting more of himself. He hates to be misunderstood, he brings stability to his friendship groups, and he has high expectations of being treated as kindly he treats others. Absent that kindness, he doesn’t react. He goes silent. He doesn’t swing his moods around. He doesn’t want to be demonstrative except in his safest places. He knows what he wants, and he wants things on his terms. He likes being himself more than following the crowd. His connections with people take a long time to foster. Once made, though, he’s loyal and it takes a lot to lose his heart. He is sensitive in his way, both to how he feels and how others feel. The combination is so intense that, unless prompted, he can overlook context and environments because of all the things he senses in people, missing the forest for the trees. He loves deep thinking, and he loves to laugh, using irony and plays on words. And sports, he likes sports. If he reads this, he won’t like it. He’s way too cool for this. He’d much rather cruise around undetected.
So how do they get along? I only know what I see and what they tell me. I’ve pretty much said they get along rather well as far as siblings go. I’ve felt pretty lucky, even more lucky in this sense than some of my friends with two neuro-typical kids. My boys don’t argue (with each other) much. I haven’t seen hate. They’ve seemed simpatico. But what do I know? One lashes out at the other, the other one barely snaps back. One is busy playing online games with his friends and the other wants to do things together, but for one reason or other it doesn’t happen. I don’t think much of it. One says harsh things, not unlike a preschool kid being vindictive after losing a game. I don’t take it seriously, and I figure the other kid blows it off, too.
But I know more now. I know that the older brother feels the need to hold himself back, to edit himself, to be the stable one. He takes his brother’s words to heart, and doesn’t filter them through the lens of his brother’s disability. He doesn’t have the remove of a parent. I mean, I’ve been there. I’ve heard the harshest things for years from a little boy who is feeling more than his vocabulary can express, who chooses the worst words he can think of just to say how bad he feels. When he directs his pain at me, I’m one step removed most of the time (not all the time.) I know that something else is going on under the surface, and that he’s hurting or angry and that it will pass. I know he really loves me. My own worst pain from all this is when I think his pain will make him want to hurt himself, a threat he’s made many times. It’s scary. But I’m an adult, and I see this little kid, I see him as the baby I carried, as the kid who held my hand. My oldest son, though, he sees his almost peer. He takes his brother’s words at face value. Only as he grows up is he starting to understand enough to have his own remove. He’s learning. But he hurts differently.
The three of us had the best talk today. Which makes me feel like an amazing parent, but actually it wouldn’t have happened without my oldest son starting to learn how to speak up. He wants to be close with his younger brother, and this talk wouldn’t have happened without him feeling how important his brother is to him. He talked about what he’s been going through, his perspective as his brother interacts with him. There was a lot of squirrely-ness from the youngest, but we made our way through it. In his way, the younger one tried to make the commitment to caring about his brother’s feelings, but he said it even as he distracted himself with games, so it wasn’t really believable. I believed him, but he needed to communicate it to the one that mattered, his big brother. Second try. Third try. He finally gave it the right attention, and it came from his heart, in his way. Still, it was hard for my older son to accept it for what it was. The youngest was speaking through echolalia, repeating the types of things that are said to him to cheer him up by his therapists and behaviorists. “You are the best, I wouldn’t be who I am without you, if it wasn’t for you I wouldn’t have accomplished anything good in my life.” I know these broad statements spoke more to the expansive regret my youngest had over not having cared about his brother’s feelings, relentlessly teasing him for years, with his brother having to be the bigger person even when he didn’t know how. It was hard for him to hear his brother as being genuine, but with a little bit of an aside explanation, and because he had researched the autism spectrum for a paper he wrote (he chose the subject matter), he remembered about echolalia. Things fell into place. My sons had a genuine exchange. One made a commitment to care about the other’s feelings, and the other made a commitment to be honest about when he feels hurt, with an expectation for his brother to respond with care and not harshness.
I know it won’t be perfect. I know we’ll have to revisit those commitments again and again. I know they want to be close. It’s so much of what I’ve wanted for them together, to be close as brothers.
So I learned that things were not as they’d seemed to me. I couldn’t roll up in a ball of sadness and guilt. I know I hadn’t insisted on the one to hide his feelings and take so much on, quite the contrary. I think I made an effort to hold the younger one responsible for how he treats others even though he has a disability. I thought I was advocating for them equally. But even though I strive to be sensitive to both of their needs, I still missed the distance that was growing in one son’s heart towards the other, or the particulars of his experience because he goes through this as a peer, not a parent. All I can do is see things for what they are, accept the truth as it presents itself, and learn.
Their friendship is a work in progress. They know it and I know it. But even in this imperfection, even knowing we’ll never get it just so, it’s still pretty perfect. We have a whole lot of imperfection and pain that only other neuro-diverse families understand. I hope this post helps map out some sort of path to wholeness in other families that feel they are drifting apart.

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