Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Giftsby Susan Senator
Receiving a diagnosis of autism is a major crisis for parents and families, who often feel as if their world has come to an end. In this insightful narrative, a courageous and inspiring mother explains why a diagnosis of autism doesn't have to shatter a family's dreams of happiness. Senator offers the hard-won, in-the-trenches wisdom of someone who's been there and is still there today—and she demonstrates how families can find courage, contentment, and connection in the shadow of autism.
In Making Peace with Autism, Susan Senator describes her own journey raising a child with a severe autism spectrum disorder, along with two other typically developing boys. Without offering a miracle treatment or cure, Senator offers valuable strategies for coping successfully with the daily struggles of life with an autistic child.
Along the way she models the combination of stamina and courage, openness, and humor that has helped her family to survive—and even to thrive. Topics include: the agony of diagnosis, grieving and acceptance, finding the right school program, helping siblings with their struggles and concerns, having fun together, and keeping the marriage strong.
"An honest, emotion-filled account of what it is like raising an autistic child, its effects on the family, marriage, and one's own test of strength."—Brookline Tab
“I hope the book succeeds in finding its way onto the bedside tables of many mothers and fathers, teachers and administrators, politicians and doctors. Regardless of whether they have anything to do with autism, they’ll learn a lot about life from Senator, Nat, and their family. What this book shows us about acceptance and love would make the world a far better place."—Timothy Shriver, CEO, Special Olympics
"Families will gain much insight into how one family successfully coped with the challenges of raising an autistic child. Mothers, fathers, and siblings should read this honest account of family life with autism."—Temple Grandin, Ph.D., author of Thinking in Pictures and Emergence: Labeled Autistic
"This is a book that every parent and professional working with autistic children should own, read, and reread. These children have such enormous potential in their own way. It is so refreshing that this family sees it too."—Margaret L. Bauman, M.D., associate professor of neurology, Harvard Medical School
"Senator's story reminds us that while there are currently no medical treatments or cures for autism, we must maintain hope."—Karen London, cofounder, the National Alliance for Autism Research
"Senator's common sense approach and courageous journey give readers a practical and entertaining experience."—Doug and Laurie Flutie, cofounders of the Doug Flutie, Jr. Foundation for Autism, Inc.
"This book reaches out to other families in a voice that inspires hope, but without losing realism. The everyday struggles are in the foreground but throughout her positive spirit illuminates a path that will make the journey easier for other families, and will help them feel they are not alone."—Simon Baron-Cohen, M.D., director, Autism Research Centre, Cambridge University
Read an Excerpt
4:30 p.m. Thursday, and I notice it's raining.
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
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,
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:
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
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.
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.
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
Nat says tearfully, "After Max, watch
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.
Max and I whip our heads around. "Nat! Cut it out!" we shout together.
"Mommy will drive," Nat insists.
of course, comply.
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.
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 Brittany
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
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.
Meet the Author
Susan Senator is the mother of three boys, the oldest of whom has autism. She is the author of Making Peace with Autism, a memoir of her family’s struggles and triumphs. Her writing on autism has appeared in the New York Times, the Washington Post, and the Boston Globe. She has been featured on the Today Show, CNN, MSNBC, Voice of America, and NPR.
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