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How Bernie Marcus and a Yale scientist are revolutionizing autism treatment
These articles originally appeared in our September 2013 issue.
Nine-month-old Ansley Brane is strapped into a car seat in a silent booth. Except for a green screen on the wall behind her, the booth is all black, fitted with a handful of video cameras. Ansley, who is wearing a headband with a white bow, has nothing to look at but a blinking monitor two feet in front of her. So it’s understandable that she’s now frowning and waving her arms unhappily. Suddenly, her mother’s face appears on the screen. Ansley locks eyes with her and lights up. Sitting in a soundproof booth in the same room, Natalie Brane grins back at her daughter on her own monitor. Meanwhile, on a bank of screens situated between the booths, two researchers watch mother and daughter make silly faces at each other. In the middle of one screen’s roving crosshairs, the infant’s brown eyes are enlarged like wondrous planets.
The researcher is paying close attention to Ansley’s eyes to see what happens when videos of a female actor playing caregiver and scenes of children at play replace her mother, whose eyes the infant continues to follow. When Mom disappears, Ansley’s interest and engagement with the monitor quickly drops off. At her console, the researcher shifts back and forth between projections of these varying images—mother and nonmother—for fifteen minutes. This simple exercise, which took place in a small room of the Marcus Autism Center—a three-story brick building off Briarcliff Road near Emory—holds the key to better diagnosing one of the most prevalent and vexing pediatric disorders on earth. The eyes of autistic children, it turns out, respond to the world in measurably different ways, and this can be seen long before other symptoms emerge. Even in infants.
The center’s visionary leader is a beaming polyglot psychologist named Ami Klin. His team is developing the eye-tracking technology, tested on Ansley Brane and numerous other infants and children, that could change the way we diagnose this disorder forever. The salient fact is as simple as it is profound: If children can be diagnosed earlier, autism’s negative effects on them can be treated sooner and substantially diminished as they grow up, making their lives far less challenging. The Marcus Center was recently recognized by the National Institutes of Health as one of the top three autism facilities in the United States, a distinction made possible by Klin’s surprising move here from Yale two and a half years ago, bringing with him eye-tracking—the tool that could change everything. Today the center works with 5,700 children a year, diagnosing and helping many learn the critical communication and socialization skills
Bernie Marcus, founder and namesake of the center, proudly says that the research Klin and his team are doing “will have far-reaching results for kids around the world.” But getting Klin to Atlanta was not as easy as many things are for the man who cofounded the Home Depot. Marcus had to sell him on facilities, financial resources, the medical community, even the city itself. It finally got to the point that Marcus told Klin he’d be “a schmuck” if he didn’t come.
Some twenty-five years ago, Marcus had an employee whose young child suffered from a strange condition: unsmiling, virtually mute, with little interest in other children or typical play. Doctors didn’t know what to do, nor did the child’s mother. Marcus had never seen anything like it, but he set about trying to help. “I lived vicariously through her,” he says. “She opened up this world to me. It was a serious problem, and nobody had looked into it.”
The term autism, sometimes described as a “social intuition disorder,” was used as early as the 1940s, but it was not included as its own category in the Diagnostic and Statistical Manual of Mental Disorders until 1980. Less than a decade later, when Marcus finally learned about it, autism still received little attention or advocacy. Marcus was in his sixties then, and worth millions due to the success of the decade-old Home Depot. Shocked that local hospitals didn’t have autism programs, he cobbled together the Marcus Developmental Resource Center, which opened in 1991.
“We got an affiliation with Emory University, hired two child psychologists, and off we went,” says Marcus, now eighty-four. The early years weren’t easy. “I was basically carrying this thing by myself,” he says. “I didn’t have any help from the city, state, or federal government. I was ready to throw in the towel. But parents would put their arms around me and cry about how I’d saved their lives and saved their children. I couldn’t back off.” Over the next two decades, Marcus would invest tens of millions of his money into the center. But its first home was a clutter of trailers at the edge of Emory. Inside, a few overwhelmed psychologists tended to children with a variety of developmental issues—not just autism—teaching them how to better communicate with and understand an often bewildering world.
Even as the center moved to a small building and then a bigger one off Briarcliff in 2003, and the waiting list ballooned to nearly 3,000 children, it remained hard for Marcus to convince philanthropists that autism was a crucial issue. Using the platform the Home Depot had afforded him, he pushed this fact: While cancer affects fewer than one in every 330 children and teens in the United States, as many as one in eighty-eight children have autism. In Georgia: one in eighty-four. “Who would turn their back on a child with cancer?” says Marcus. “And yet nobody was caring about autism.”
That began to change locally in 2008. Doug Hertz, CEO of United Distributors—a major beverage transporter based in Atlanta—was then the chair of Children’s Healthcare of Atlanta’s board of trustees. He was also an old friend of Marcus’s and a longtime Marcus Foundation trustee. “I felt that as Children’s continued to gain national prominence, we couldn’t call ourselves a world-class pediatric healthcare system without addressing autism in some meaningful way,” says Hertz.
Marcus talked to Hertz about a partnership. With more than 340,000 patients who came from every Georgia county, Children’s investment could make the Marcus Center far less reliant on individual donors and grants. It could also connect a number of groups doing work related to autism—from genetics to neurology to gastroenterology—in the service of a single comprehensive model of care. “Also,” says Hertz, “there was this never-ending waiting list at Marcus, and we could reduce it."
In August of 2008, Children’s took over, which meant that Bernie Marcus could scale back his personal contributions from enormous to slightly less so. (Over the years, he has given more than $54 million to the center, and another $26 million to a research and advocacy organization called Autism Speaks.) Children’s changed the facility’s name to the Marcus Autism Center, reflecting the central focus the disorder would now have there, and began reducing operating losses, which were in the millions.
By 2009 Marcus, now seven years retired, knew the center that bore his name was doing vital work. Most notably, it was offering an early intervention treatment program for children up to eight years old, and three out of every four families saw tangible results. Still used today, it involves methods such as direct instruction of the child (face-to-face, repetitive drilling: “Put your finger on the frog”), multisensory techniques (using nonverbal reasoning skills: Place a picture next to a word), discrete trial instruction (reward-oriented: “Nice job handing me the nickel; have a treat!”), and incidental teaching (child-initiated: “Oh, you said you want to open the box?”).
While fantastic for families who can afford it (intensive behavioral treatments can cost between $40,000 and $60,000 a year), this system is woefully inadequate in a world with high rates of autism: A psychologist with a Ph.D. cannot possibly meet each week with every affected child. So Marcus wasn’t satisfied. And on top of that, his center still did very little research. “That was frustrating,” he says. “If you don’t have specimens, you can’t come up with better treatments. But there was no place in the U.S. that treated as many people as we do.” By then, they were treating around 3,000 children a year.
One of the holy grails of autism research is to decrease the average age of diagnosis, currently four and a half years. If a child is identified as high risk by age two, before significant disabilities set in, the course of the disorder can be dramatically changed through early intervention. The American Academy of Pediatrics now recommends that pediatricians screen every child in the U.S. for autism at eighteen and twenty-four months. But this has put doctors in a quandary, since the standard diagnostic tools remain crude. “There is no gold-standard lab test or X-ray that can diagnose autism,” says Barbara Stoll, chair of the department of pediatrics at Emory University School of Medicine as well as senior vice president of Children’s Healthcare and a Marcus Center board member. You can’t ask an infant questions or hope that latent behaviors reveal themselves. You’ve got to rely on other measures, which take into account how babies learn and communicate.
So in the summer of 2009, flush with resources, the Marcus Center pursued a medical director who could blaze a trail into this frontier.
Meanwhile, in New Haven, Connecticut, Dr. Ami Klin was facing the opposite problem: He had a diagnostic tool and highly trained personnel, but little backing from Yale University, where he taught in the psychology department and had few patients to see. Born in Brazil to Holocaust survivors, Klin went to college in Israel and France and then worked as a motorcycle courier in England to pay off school debt. While getting his Ph.D. in psychology at the University of London, he chose a unique off-campus living situation—an apartment complex for psychologically impaired people—“to taste real life,” he says. Margaret Thatcher had just shut down long-stay mental hospitals, and many of the adults in his residential unit, where he lived for three years, had autism. Klin befriended them: “I realized the things that bring us together are not entirely dependent on cognitive abilities.” He was soon recruited to Yale, ultimately receiving tenure and directing the school’s first autism center.
In 1999 he and his colleagues began applying an eye-focused military technology—used to figure out which soldiers had traumatic brain injuries—to diagnosing autism. Their theory was that differences in eye movement among infants likely to develop autism could be recorded at a very early age. “We are all born in a state of fragility,” says Klin, whose accent is marbled by his travels in South America, Europe, and the Middle East. “To survive, we need a caregiver. And from the first days of life, we prefer to look into this person’s eyes. That reflex creates a mutually reinforcing choreography with the caregiver.” That choreography underscores a fact crucial to understanding autism: We grasp the world through others. “That’s the plot for brain development,” says Klin. “And without that ability to understand people, you won’t learn about the world in quite the same way. Children with autism are born with an attenuated sense of the other, and that puts them on a completely different path.”
The basic hypothesis—that infants on the autistic spectrum respond differently to visual stimuli—was born out of data collected over ten years of eye-tracking at Yale. By 2009 Klin’s discovery had gotten the attention of Barbara Stoll and Don Mueller, executive director of the Marcus Center.
Klin seemed reluctant to leave Yale. “It took many calls on my part,” Stoll says, “with Ami saying ‘I’m flattered, but I have no interest in going elsewhere.’ But we were convinced that he was the right leader for us.” The Woodruff Foundation and the Georgia Research Alliance, who helped recruit him, agreed. As did Bernie Marcus.
“He’s Jewish and I’m Jewish,” says Marcus, “and I said, ‘You’ve gotta be a schmuck to turn this down.’” Klin was both startled and moved by Marcus’s bluntness: “It helped me make the decision,” he says.
Secretly, Klin knew that the Marcus Center was the solution to his own obstacles as a professor marooned in the Ivy League—anything but the real world. “I love Yale,” Klin says, “but we never had any institutional support. Autism was thirty-first fiddle to genomics, diabetes, you name it. And here in Georgia people were saying, ‘We’re going to jump-start you!’”
Klin began work as the center’s new director in January 2011. He was also named a Georgia Research Alliance eminent scholar and director of the new division of autism and related developmental disabilities in the department of pediatrics at Emory’s School of Medicine. While he won’t disclose his salary, the assets of the center give an idea of its allure: The 2013 operating budget is $19 million. (More than 75 percent of this money comes from Medicaid, the Department of Education, grants, and private donors like Bernie and Billi Marcus. The rest comes from private insurance, self-pay, Emory, and Children’s.) Then there are the human resources: thousands of kids. “He can see more patients here in one month than he could see in two years at Yale,” says Hertz. Children’s is affiliated with 1,700 local pediatricians who can implement whatever approved research and tools Klin’s team creates—like eye-tracking, which they hope to have doctors using in the next few years.
“We developed wonderful science at Yale,” says Klin. “But it was confined to
Klin brought many of his top associates down from Yale (after scouting visits of their own, to dispel provincial notions about Atlanta). Warren Jones, who built the “first hack eye-tracker” in 1998, explains why he followed: “The entire city is making care for kids with autism a priority.”
Klin moved his family into a spacious home near the center. “I use my graduate thesis to prop up my children while they’re playing piano,” says Klin. “It’s very big.” His ultimate goal at the Marcus Center, as stated in a recent eleven-page letter to Bernie Marcus, was even bigger: “to address the challenges of autism not only within the confines of our building but as a public health challenge weighing on our city and state.”
Without FDA approval for widespread use—a process only in its early stages—eye-tracking remains just a diagnostic research tool. But Klin’s team is planning for a clinical trial. “It’s potentially transformative in being able to identify kids earlier,” Stoll says. This earlier diagnosis could have significant societal effects, too. According to a 2007 paper in the Archives of Pediatrics & Adolescent Medicine, it costs almost $3.2 million to care for an adult with autism during his lifetime. That amount could be radically decreased if diagnosis and treatment arrived earlier, mitigating the disorder’s impact. Teach a child to communicate and socialize when he’s young, and you won’t have to help him do it for the rest of his life.
There is no longer a wait for diagnosis, but there remains a list of just over 1,000 children needing clinical treatment at Marcus. This is the push-pull of progress. “Do I think that in the next five years we will emerge as the leader for kids with autism in America? Absolutely,” says Stoll. “We’re on our way.” The center sees some 5,700 children a year: 70 percent use Medicaid; 35 percent are African American. This is the real world that Klin wanted when he left Yale.
Within ten months of arriving, Klin and his team competed with fifty-five other autism centers around the country for a National Institutes of Health award. Only three, including Marcus, won. Named an autism center of excellence, Marcus received an $8.3 million grant, much of which will be put toward continuing to research differences in “social-visual and vocal engagement” among autistic infants. The center has built four eye-tracking labs in the last two years, where babies like Ansley Brane—who is low risk—can be tested for signs of autism. (The center’s fiscal health has improved too, though it still needs patrons: Since Children’s took over, operating losses have dropped from $3.2 million to $1.3 million per year.)
“It’s a very simple equation,” says Klin. “You identify early, you treat early, you help these children fulfill their promise. It’s good for everybody. If you don’t do that, then we are stuck with the kinds of incredible treatment programs we have in the center, which I hope to put out of business one day.”
Beth Elliott, assistant to the rector at St. Luke’s Episcopal Church, has three sons: twelve-year-old twins Denver and Elliott, and eight-year-old Paul James. When the twins were two years old, in 2004, Beth began to notice that Denver wasn’t making the same progress as Elliott. He was slow to crawl and had only spoken a single word: truck. Their pediatrician said, “It’s just a twin thing.” Beth did some Googling and found autism; she didn’t want to believe that was what Denver had. Her parents happened to take a tour of the center and told her she should visit with Denver. Reluctantly,
she agreed: He’d just been at a birthday party and was the only one who couldn’t put the straw in his juice box.
A social worker at Marcus went through an autism checklist with them. “It was yes, yes, yes, across the board,” says Beth. Soon Denver was started in the early intervention treatment program to work on his social and speaking skills. He made great progress: After two months, he finally said “Mama.” Beth burst into tears. He entered public school, where he has excelled, at six.
A few years later, Paul James began to show similar signs. (There seems to be a strong genetic component to the condition.) He was obsessed with opening and closing the screen door. At parties with other kids when he was a year old, that’s all he did. By eighteen months, he was throwing tantrums and struggling with language. Beth called Marcus again. After a few years in the intervention program, Paul James entered kindergarten, and he’ll begin third grade at the Marietta Center for Advanced Academics next year. He’s still a little sensitive to loud noises—common among autistics—and some of his motor skills are lagging a bit. But you’d never know he isn’t a typical child.
The same is true for Denver, who’s more worried about girls these days. “It doesn’t rule his life anymore,” says Beth. “And it turns out he has this remarkable voice.” He sang Coldplay’s “Viva la Vida” in front of the entire fifth grade at his school’s talent show. “I wouldn’t have imagined that in a million years,” his mother says. “I can remember looking at his eyes years ago, before we knew about autism, and thinking: He’s not connecting with me. To have this eye-tracking technology, that would make such a huge difference for children. Maybe even Denver and P.J.’s children. I think they’ll have families of their own someday.”
The Littlest Lobbyist
Nine-year-old Ava asks for an insurance mandate
Last March little Ava Bullard stepped to the front of the Georgia Senate hearing room in a floral-patterned dress and cowboy boots, her hair in a high ponytail that flopped as she walked. She looked as comfortable as a child going to the front of the class for show-and-tell.
“I’m Ava and I have autism,” she said to a standing-room-only crowd. “I’m here because you need to pass Ava’s Law to help all the children in Georgia.”
Then she turned and waved to the audience. What more was there to say about the potential for early intervention to improve the lives of children with autism?
Of course, not all of those children make such a dramatic transformation as Ava. But early intervention with intensive behavior therapy is considered their best hope of overcoming the deficits of this developmental disorder. It involves up to forty hours a week of one-on-one training in communication, language, behavior, and social skills. It costs about $50,000 a year.
RAND Corporation, a California-based think tank, recently analyzed such intensive programs and found “moderate” evidence that they produce improvements. The American Academy of Pediatrics recommends intensive behavior therapy of at least twenty-five hours per week.
Thirty-two states require insurance companies to pay for these treatments. Autism advocates want to add Georgia to that list.
Ava’s mother, Anna Bullard, has become a passionate voice for the mandate, officially titled “Ava’s Law.” Advocates from Autism Speaks, a national organization that promotes autism awareness, asked her—and Ava—to be the faces of the effort in Georgia.
Bullard struggled to get a diagnosis when her middle daughter hadn’t begun to speak, respond to her name, or even point by the time she was two years old. She scraped together money and resources for the intensive program with help from her family and church. “Once a week, I meet a new family who calls me or emails me and tells me their child’s story, which sounds a lot like my child. They can’t get treatment,” says Bullard. “It is my life’s mission.”
The politics are daunting. Bullard’s uncle, Senator Tommie Williams from Lyons, was president pro tem—one of the state Senate’s most powerful leaders—and even he hasn’t been able to make much headway. In 2009 the Georgia Senate created an autism-study committee, but it never met. Now the bill has been referred to a mandate review commission, which is also hearing requests for mandates on hearing aids and medical foods. The insurance industry opposes mandates and wields considerable influence.
“To me this is a no-brainer,” says Senator John Albers from Roswell, sponsor of Ava’s Law, Senate Bill 191. (There’s a version in the state House, too.) He’s a Republican who usually opposes such regulation. But in this case, insurance coverage would improve the lives of children—and save millions of dollars over their lifetime, he says. Georgia already has twenty-eight mandates for group and individual insurance plans. (Self-insured plans are not included.) But it isn’t clear that legislators are inclined to add another one for autism.
When the bill returns to the legislature this winter, Albers expects Ava’s return as well. “I’m going to need her,” he says. —Michele Cohen Marill
You Don't Know Jack
When you've met one child with autism, you've met one child with autism
Atlanta native and engineer turned stay-at-home mom Jeanie Devine began blogging in 2010. Her posts took an unexpected turn when her son Jack was diagnosed with autism at age two. A couple of years later, her blog, Reinventing Mommy, reaches about a thousand readers daily. Devine has served as a spokesperson for the Georgia chapter of Autism Speaks and helps organize local parent support groups. Here are a few excerpts from her journey. Read more at reinventingmommy.blogspot.com. —Jeanie Devine
Monday, May 2, 2011: Walk Beside Me
One out of eighty-eight children. One out of fifty-four boys.
My life has taken on a whole new meaning. I titled my blog Reinventing Mommy, but I never really knew how true this would be. I never knew that months later, this is exactly what I would have to do, reinvent myself.
You might be wondering what the numbers above represent. That is the number of children in the U.S. currently affected by an autism spectrum disorder.
They say that when you’ve met one child with autism, you’ve met one child with autism. They are all wonderfully unique. Some speak; others are nonverbal. Some have little to no eye contact; others have relatively good eye contact. Some are more social and affectionate, while others are very much disconnected from the world. Some kids are low-functioning, some are high-functioning, and some are smack in the middle.
If you have met Jack, you have also met one child with autism.
Jack was recently diagnosed with PDD-NOS, which stands for Pervasive Developmental Disorder—Not Otherwise Specified. It is a form of autism.
If there is one thing I hope Jack can teach you all, it’s that autism doesn’t define a person. He is a happy and healthy little boy. He loves to play with his toys and his trains. When he smiles, he lights up a room. He faces enormous challenges every day as he currently cannot communicate his wants and needs to the outside world, but he is happy with who he is. This is his life, and he lives it with no regrets. While he is different from your child, he is also similar. He is, first and foremost, a child.
Friday, January 27, 2012: Treading Water
Normally, I try to encourage people that autism isn’t the end of the world. That’s why this is going to be a very hypocritical post.
Tonight was not my night for advocacy or heroism. Tonight was a night of feeling overwhelming defeat. My boy had been better today, so I was optimistic for the evening. When I got him up from a nap, he headed straight for his net swing, and I gladly obliged. When he said “down,” I let him down.
Then the storm came over us. I still don’t know what was wrong. The tears and the screaming seemed to wash over him like a tidal wave. Within minutes, he was unreachable. All I could do was stand on the shore and watch it happen. I wish I could look inside his mind and see what piece of this puzzle I am missing in this moment.
I watched him fight with himself for what seemed like ages. He clawed at his skin, and I pulled his hands away. He stomped and sobbed. He ran to the light switch, and I turned it off. He ran to the window, so I shut the blinds. I tried to block everything out for him. I sat on the floor with him, seeing him pace and lose control, and I did the one thing that is only natural for a mother to do—I reached out to him to comfort him, to pull him close, to try to make it okay.
He lashed out at me. He clawed at my face, slapped me, and screamed louder, like I was torturing him. I let him go and watched him run to the safety of his foam letters. I listened as the usual refrain began, “A . . . T . . . A . . . T . . .,” punctuated by residual gasps and sobs. I watched and my strength drained out of me. I could not help but let the tears flow, softly at first, but then like a torrent engulfing me. I try not to let them out, but I can’t help it.
Through the flood, I look over at my boy. His face is wet with the remains of his torment. He’s moved on to the next couple of letters, “D . . . O . . . D . . . O . . .,” and his breathing starts to stabilize as the gasps disappear. I let out a whimper, beckoning for his attention: “Jack?” He doesn’t flinch or look up. I creep closer and am now less than a foot from where he sits waving the D and O in front of his face. “Jack?” He doesn’t respond. I can’t stop the tears now. I’m sobbing, sobbing like I haven’t sobbed in a long time. My little boy is sitting right before me, but he’s gone all the same. It’s just him and the letters . . . It’s like I don’t exist. He doesn’t look in my direction. He doesn’t notice me crying.
The optimism I try to have eroded tonight. I couldn’t help but let those thoughts enter my mind. Will my son ever feel the emotions that the rest of us do? Will he be able to convey those emotions in a way we can understand? Will he ever enjoy being a part of our world, or will he always prefer to retreat into his own? Will he feel the things—love, compassion, empathy—that make us human?
Does he care? Does he even love me?
I have talked to parents with older children on the spectrum who assure me that their kids convey love and that mine does as well. However, in the times in which the storm rolls in, it is these thoughts that come ashore in the aftermath. The lack of awareness of my pain, my tears, is what brings me down and threatens to pull me under.
So what do I do? I do Floortime* as though my life depended on it. I wade into those waters day after day, trying to pull my sweet boy’s head above water so he can see the beauty of the surface. I hope one day he does.
This is autism awareness, my friends. This day. It’s about the things you can’t see. Sure, you notice the speech delay. You notice the hands that flap so vigorously when he gets excited, as he raises to his toes as though about to take flight. You notice the screams when it becomes too much. You notice how he always has his letters. You notice that he won’t look you in the eye like other children will, because that’s what you’ve been told to look for. You notice he can’t do the things for himself that other children his age have been doing for what seems like ages.
You don’t notice the silence. The way he doesn’t turn when I call, the way he tunes the world out, or the way he doesn’t see my tears. You don’t notice how he can shut everything out, including those who love him the most. You don’t notice the way he won’t give me a kiss or that he has never once given me an actual hug. This is what makes autism particularly cruel to families. You don’t see how I love him with every ounce of energy I have within me and how I long for one hint of reciprocation of that love.
I have to believe he’s in there. It’s up to me to find a way in. It’s up to me to show him my tears and help him understand. I have to believe that this is something he’s capable of feeling, these higher levels of cognition and emotion that make us uniquely human.
It’s up to me to just be there—to tread water—until he does.
Thursday, March 22, 2012: Cupcakes and Sprinkles
My angel’s birthday is tomorrow. He’s going to be three. I can’t get over it.
Today I took Jack to visit the special needs pre-K class that he’ll be attending beginning Monday. It’s going to be bittersweet, for sure, seeing my boy start at his big-boy school. Today’s trip was intended to acclimate him to the room, the kids, and the teachers so that it would not be such a big shock come Monday.
We also decided to bring cupcakes. I can’t tell you how excited I was about it.
Here’s the thing—Jack isn’t aware that it’s his birthday. I try talking about it, asking him, “Who has a birthday tomorrow? Jack has a birthday tomorrow!” He doesn’t understand. He doesn’t do well with groups of kids (so you can imagine the challenge we’ll have with preschool), so we decided not to throw him a birthday party. I know a few kids I could invite, but Jack really doesn’t have friends. He doesn’t always act aware of the other kids. I had long ago given up hope of having a party for him this year.
However, going to his school gave me the perfect opportunity to both bring some goodwill Jack’s way with sugary bribes and to have other kids, just for the briefest of moments, celebrate Jack’s birthday. So I packed cupcakes up and off we went.
When it was time for snack and cupcakes, Jack screamed and slapped at me as I held him for his birthday song, but I really could not have cared less. The other kids stared at him with smiling faces, so excited to sing and eat his cupcakes. Several of the kids came up and wanted to touch him or give him a high five. Several talked to him, even though Jack scripted* and kept his back to them. One little boy wanted to be everywhere Jack was. Jack didn’t seem to notice any of it, but my heart was overflowing. These kids were trying their hardest to welcome their new friend.
He may not have noticed today, but one day he will. He’ll notice the little boy who always sits next to him and says “Hi, Jack!” I wanted to give that little boy a big bear hug and thank him for the greatest gift he could give my boy, kindness and friendship.
We left shortly thereafter, not wanting to leave on a bad note. The teachers are great, the class is great, and the kids are awesome. I am so blessed that my boy is going to be in such a good place.
I left with tears in my eyes. Tears for the friends I hope he will make. Tears for the teachers who go out of their way to make sure my boy is okay. And tears for the promise of all that is to come.
Monday, April 29, 2013: Among His People
I had a lump in my throat this morning as I put my sweet boy on the school bus. My baby who flapped his hands when his dad’s car backed out of the driveway. My baby who gleefully said “See May” because he loves the calendar. My sweet boy who—after I had said it—parroted right back to me, complete with the inflection and tone I used, the most beautiful phrase to come out of his mouth: Jack and Mama.
I wanted to keep my boy at home where nothing could harm him. Where he wouldn’t be made to feel bad or wrong. Where he could be exactly who he is. Where he could be protected within this cocoon that we have established here at home.
Yet . . . in the wake of feeling like the world just might not be a good fit for my boy, we went back to the Georgia Aquarium over the weekend. It was Autism Awareness Day there, and we had free tickets and a whole two hours to enjoy the aquarium prior to it opening to the general public. Naturally, I couldn’t turn down free tickets, so I sent in my RSVP the moment I received the email about it.
Jack’s experience at the aquarium this time around was actually worse than the last. He really struggled to keep it together and was unsuccessful most of the time. You might think this would have led to a negative experience for us all this go around, but it did not. Instead, when Jack was screaming, when he was pacing, stimming,* squealing, and generally doing anything but looking at the fish, there was no judgment. None. Instead, I got smiles from the other moms. A couple of people commented on how cute he looked. One lady, escorting her older child wearing a set of bright blue headphones, commented to me just how much my son behaved like hers when he was Jack’s age.
And that’s when it hit me. We speak so much about inclusion. Inclusion this and inclusion that. It’s better for our kids to be around “typically developing” children, right? Here’s where I would like to amend that statement . . . You see, there were NT* children at the aquarium yesterday, so you could call it an “inclusion” activity, but there was a difference. For each of those families there was just like ours. They all spoke the language of autism. Every person in that aquarium had an autistic loved one, child, sibling, relative, or friend.
Jack and I were among our people.
Instead of a negative experience being, well, a negative, it didn’t seem so bad because no one else there was telling us that it was. There was no one staring or making us feel like our son was doing something wrong. He could just be.
Understanding and acceptance create an environment where children—and us as their parents—are made to feel like they are not wrong. They are okay. That the unique things that make them who they are—even their stims, fixations, and rigidity—are not merely aspects of themselves to be stamped out.
Rather, they are made to feel like people.
People who are worthy of love and respect.
Imagine the possibilities in such a world.
1. In Floortime therapy, a parent joins the child on the floor to play and allows the child to lead the interaction.
2. Scripting is the repetition of words, phrases, or other speech sounds, often taken from movies, books, or other people.
3. Stimming is a repetitive body movement, typical of autism.
4. NT stands for “neurotypical” children, who are not on the autism spectrum.