In “Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts,” Susan Senator describes her journey of raising a child with a severe autism spectrum disorder, along with two other boys. Senator offers valuable strategies for coping successfully with the daily struggles of life with an autistic child. Senator was invited on “Weekend Today” to discuss her story. Here's an excerpt:
Prologue
It's 4:30 p.m. Thursday, and I notice it's raining. Oh, no, I think. How am I going to do this? I set my coffee cup down, get up, and walk into the playroom. Ben, five, my youngest child, is sitting on the big yellow chair, absorbed in a video. His brother Nat, fourteen, is sitting on the floor at Ben's feet, also watching the video, which is Disney's Pocahontas. My gaze lingers on them idly for a moment. I notice, as I often do, that the two boys, one large, one small, have exactly the same profile, the same blond bowl haircut, the same intense stare. The same movie interests. I take in the action on the television screen to gauge where they are in the movie. I hear the Indians singing “Steady as the Beating Drum,” and I sigh in despair. It has only just started, and I have to interrupt them; because of the rain, I have to get Max, their middle brother, from his play rehearsal. I have to change the routine.
The rain is now coming down hard, absurdly so. I clear my throat. “Guys.” Nat looks up immediately, already wary. Ben does not even seem to hear me. I consider for a second an ironic question: Which one is autistic here, and which one is normal? “We have to get Max now,” I tell them, hoping that my tone of voice conveys just the right mix of authority and empathy so that I can avoid a fight. This is, after all, an unpredicted change in schedule.
Ben has heard me, of course. “Aw, Mom,” he says, but he is sliding off the chair, Pocahontas soon to be forgotten. Nat is out of sight, presumably fetching his shoes. Maybe I am out of the woods. But as I turn to gather my keys, I jump at the sound of a sharp, loud scream coming from the closet, like the yelp of a dog: “AAARGH!” He is coming out of the closet with his shoes.
“Stop it, Nat!” I say. No empathy this time. My response comes from pure frustration and annoyance.
Nat comes back into the room. He looks at me and says, “Get Max now” in a voice close to tears. Then he screams again. The sound cuts right through me. I clench my teeth. I have to gain control — of myself, of him. I focus on the distress in his sapphire blue eyes and hoarse voice, and from way down inside somewhere, I summon my tired but immutable love for him, my fragile firstborn.
“Nat. We have to get Max. It's raining. I'm sorry I didn't tell you. I didn't know.”
“AAARGH!” Again.
My compassion evaporates. I take a step toward him, menacing. “Stop that,” I say through my teeth, as angered by my inability to reach him as by the screams.
He draws back and says, “Get Max! AAARGH!” His pupils are so dilated that his violet eyes are now black. “Nat. Stop. We have to go.” I sigh and wonder how the hell I'm going to get him into the car.
“AAARGH!” Now he runs past me, stomping loudly. My heart thumps hard. I remember the red pinch marks he left on Ben's arm, just two weeks ago. I race over to stand between Nat and Ben, who is standing at the top of the stairs to the basement.
“No, Nat!” Ben shouts fiercely. Nat is twice his size, but Ben is ready to defend himself. But Nat barrels past us, down the basement steps. We hear the slam of the back door in the basement. Ben and I follow him to the car. The rain is pouring down our necks like water from an open faucet. Nat is waiting in the driveway, sucking his thumb, drenched and oblivious. I settle the two boys into the back seat of the car.
“After Max, watch Pocahontas,” Nat says tearfully, “After Max, watch Pocahontas.” His mood has shifted suddenly. For whatever reason, it's over; he will cooperate now.
“That's right, sweetheart.” I sigh in relief. I pull out onto the street, windshield wipers flapping crazily. I turn down the next block. There, walking toward me, head down against the rain, is a tall boy with thick blond hair that sticks out from under a camouflage hat. It is Max, looking as though he's showered in his clothes. I pull up to the curb and open the car door.
“Oh, honey, why did you walk in this? Why didn't you wait? Or call me?”
Max slides into the car, and the air fills with the scent of sweaty, wet boy. “I don't know,” he says, shrugging, sounding almost apologetic. He takes in huddled Nat and angry Ben, understanding all, expertly adding up the inconveniences he feels he has caused. “I didn't think I could. You told me this morning I had to walk. So I walked.”
As often happens when I deal with Max, I am flooded by mixed feelings: guilt and sadness that he has learned to be so self-reliant so early in life. That he understands what I had to go through to come and pick him up and that he tried to spare me by walking home in the rain. At the same time, I'm filled with pride and happiness that he is so mature and thoughtful. Even though he's only eleven, having him there in the car with me makes me feel stronger and happier. Safer. I start to relax, releasing my tight grip of the steering wheel.
“AAARGH!”
Max and I whip our heads around. “Nat! Cut it out!” we shout together.
“Mommy will drive,” Nat insists.
I, of course, comply. I will if you would stop screaming! I think. But then I feel a softening, and a small inner smile. As we head home, I realize the hard part is over, we're OK, and I'm pretty sure that it looks as if it's beginning to clear off to the east.
Nat is, and has always been, an insoluble puzzle to us. Now fifteen, he is difficult to know, apparently in need of no one. Though he walks, talks, eats, sleeps, laughs, and goes to school, he will never be a “regular” kid like his brothers. No matter how much time has passed since his diagnosis, when I think about the things he will never have or be in life because of his autism, the pain of it fills me anew.
When I meet fifteen-year-olds and hear them talk, when I hear their teenage bravado and see their adolescent awkwardness, a part of me shrivels up in misery and in envy of their parents. When I look at their rooms, messy and filled with posters, outgrown toys, expensive sneakers, meticulously chosen ugly clothes, I know that such things will never be an issue between Nat and us, and I mourn that. His room is full of things that we, his parents, have chosen for him, many of them long ago. His posters are of frogs or Curious George, not Britney Spears or the Celtics. His sneakers are expensive, but we tie them for him. His clothes have the labels cut out of them because he can't tolerate even the tiniest scrape of one against his neck. With Nat there is no swagger, no adolescent angst. Nat's room is a capsule of who he is: stuck at different ages, flashes of toddlerhood mixed with various attempts to broaden him.
There is no real knowing how Nat's autism affects our two younger boys. Max, who by personality and birth order is a peacemaking, tolerant middle child, is forced also to assume the mantle of the oldest. He is of necessity a trailblazer, because his big brother cannot show him the way, telling him which teachers in his school are nice or clueing him in on puberty. Even though we're determined not to let him put his needs aside because his brother is so needy, I suspect that somewhere along the way he has learned to keep a lot to himself; to struggle quietly on his own with growing up.
And little Ben is just beginning to realize that his oldest brother rarely answers him, may laugh at him when he cries, and breaks apart his Lego structures but has no interest in building anything. Recently he asked me if Nat's brain is “broken.” He is learning the hard way that his biggest brother is someone to avoid, a dead end, even; also that sometimes life can be painful and make no sense.
We as a family are frequently hamstrung by Nat's unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend's party without first wondering, “Can Nat handle it?” Despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn't, he can be just plain unpleasant, unhappy, or embarrassing in public.
This certainly isn't what Ned and I expected when we began our life together. Having Nat has tested our marriage, forcing us to stick together even when we have been tempted to run. Ned has had to adjust his career; he has chosen to be a family man rather than a company man. He says he's never looked back, and I believe him.
Sometimes, though, I wonder what life would have been like if Nat had been normal. I try not to get to that question, but inevitably it comes up. I look back, I look forward, and sometimes all I see are sad and scary realities. But still I look, because that is how I learn, and how I get through a day. By looking at it all honestly, I come to understand how we function as a family, what has worked for us and what hasn't, and, maybe, I can get a sense of what might be coming next.
Excerpted from “Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts” by Susan Senator. Copyright © 2005, Susan Senator. All rights reserved. Published by No part of this excerpt can be used without permission of the publisher.