THE FLORIDA-BOUND plane was 40,000 feet in the air, and a 5-year-old boy was screaming. “I want bye-bye plane,” he yelled. “I want down.” He pounded his head with his fists and then sank his teeth into his own wrist. He began flailing, knocking into the passengers next to and in front of him. Some stared and others looked away. His mother, Whitney Ellenby, stood up in the aisle.
“I’m so sorry,” she said. “My son, Zack, has autism. I’m doing the best I can and I will get him under control.”
After 20 minutes of physical restraint, Zack began to calm down as his mother whispered over and over, “We’re almost there, almost done. You did it, you did it.”
Zack’s father, Keith Reuben, leaned over and said, “We are never doing this again.”
No, Ellenby said. “We’ll do it a hundred more times until he gets it right.”
IN THE 12 YEARS since her son’s diagnosis, which she once viewed as the end of her life, Ellenby has been stared at, yelled at, even had a soda thrown at her. She’s done things differently than many parents of a child with autism—when traditional therapy didn’t work for Zack, she decided to try her own methods to ease his intense fears and phobias. That often meant getting physical.
What’s wrong with that kid, she heard people say as she dragged her son into a live Sesame Street show kicking and screaming. What a terrible mother. She kept doing it.
Along the way, Ellenby, a former attorney who lives in Bethesda, became a public crusader for families of children with autism. She started Autism Ambassadors in 2008, when Zack was 7, to give Montgomery County families the opportunity to enjoy swimming, dancing and other activities in an atmosphere free from public judgment. Parents say she provides them with a sanctuary and a sense of belonging.
Former Montgomery County Executive Doug Duncan credits Ellenby for shaping his legislative agenda for the special needs population. She’s been asked to serve on a Montgomery County Public Schools (MCPS) advisory board that’s developing a training program for teachers who work with autistic children. Privately, she’s watched her own son transform from a child who could barely leave the house without throwing public tantrums to a middle school student who enjoys going to pools and movie theaters. She doesn’t care what people think about how she got him there: She says it worked.
WHEN ZACK WAS 19 months old, Ellenby noticed that he didn’t respond to his name, even when she yelled it. He made little to no eye contact and wasn’t walking. Like many friends and family members, Ellenby’s father, Jay, assured her that Zack was OK.
“He’s just developing more slowly,” Jay Ellenby said. “You were a late walker.”
To be sure, Zack’s mother took him to see a pediatric neurologist for an evaluation. She watched as a team of developmental therapists tried to get him to perform simple, age-appropriate tasks, such as repeating single words or pointing to his own face when asked, “Where are your eyes, Zack?” Instead, he flailed his arms, unable to pass the early level assessments.
“I knew something terrible was happening in that room,” says Ellenby, 45. “Something was seriously wrong with my son.” After the evaluation, the doctor delivered the news that created what she calls “the before and after” division in her life: “Zack has autism.”
At the time, the Georgetown Law grad had just left her position in the Disability Rights Section of the Department of Justice’s Civil Rights Division for her “dream job” as an adoption attorney at the Bethesda law firm of Schweitzer & Scherr. Reuben, a Potomac native, was working in commercial finance at CapitalSource in Chevy Chase. They’d met in 1996 and were engaged four months later. She found his steady temperament the perfect complement to her high energy, extroverted personality. He thought she was beautiful and smart, and valued her sense of humor.
As the couple began to understand Zack’s diagnosis, Ellenby made the difficult decision to quit her job in order to manage his Applied Behavior Analysis (ABA) therapy—and everything else in his life. ABA, one of the most common treatments for autism, aims to teach and reinforce new skills and to reduce undesirable behaviors, such as aggression and self-injury. It requires an intense commitment of up to 40 hours of therapy per week for at least two to three years, although some children continue longer. Ellenby hired four local therapists to work with Zack every day, and a consultant from New York who flew down monthly to oversee the program.
At 2 years old, Zack spent eight hours a day in therapy. The goal was to have him correctly perform a task a certain number of times, which meant it was “mastered,” and then replace it with a new one. Tasks included identifying colors, imitating movements such as clapping, and transferring skills from paper to real life—for example, identifying a chair, then finding one in the house.
Ellenby found herself alone a lot, and took to wandering around downtown Bethesda. “I just felt so lost,” she says. Evenings were lonely. Reuben often worked late and traveled on business, so at 6 o’clock, when the therapists went home, Ellenby was left with Zack, who was locked in his own world and unresponsive to his mother’s efforts to play with him or read to him. “I often thought it wouldn’t have mattered whether I was there or not,” she says.
She cut herself off from friends because it was too hard to hear them talk about their “perfect” children. She tortured herself with thoughts that some past wrong, or something she’d ingested during pregnancy, had caused Zack’s autism. As Ellenby tried to come to terms with giving up her career and finding herself with a “new job” she hated, she and Reuben argued a lot. She resented her husband for being able to carry on with his work, and he resented her for complaining.
“This isn’t about you,” he said. “It’s about Zack and what he needs.”
He told her that some days he dreaded coming home. “I was bitter, and saw that in Keith’s eyes, the disgrace wasn’t Zack, but my handling of Zack. The disgrace was me,” Ellenby says. They reached what she calls a “hostile détente.” She realized the situation with her son wasn’t temporary. “Zack wasn’t merely delayed, he was disabled,” she says. “That was who he was.”
ELLENBY AND REUBEN had always talked about having more than one child, but Ellenby was hesitant after Zack’s diagnosis. She knew that parents of a child with autism have a 2 percent to 18 percent chance of having a second child affected. Her husband wanted to try; she wanted to wait. “So we waited,” Reuben says. When Zack was 4, they decided to take the risk. They had their daughter, Cassie, in 2005, and quickly saw her doing things Zack had never done. She made eye contact, she smiled, she babbled. Each milestone brought the couple intense relief. No autism.
When Ellenby brought Cassie home, Zack became restless and agitated. He wouldn’t let go of his mother. He screamed when he saw that his rocking chair had been moved into the baby’s room. “My stomach started caving in,” Ellenby says. “I realized I was not going to have even an hour of happiness in my homecoming with my new baby.”
Zack’s behavior began to spiral out of control and he started having tantrums in public places.
“We would park downtown, walk away from the car, and I would realize I forgot to fill the meter. A typical child would understand going back, but in Zack’s mind, that meant we weren’t going to Barnes & Noble or to walk around downtown Bethesda. He started kicking, screaming, biting, hitting,” Ellenby says. “I had to drag him back to the car in a way that I’m sure looked abusive.”
Many of their outings didn’t end well. At a park, Zack compulsively circled the perimeter, ignoring the swings and slides and the other children. He was so fixated on the ceiling lights at the mall that he walked into other shoppers and fell down.
“What a retard,” people would say. Moments like that stuck with Ellenby, who later created Autism Ambassadors to host events exclusively for children and adults with autism and their families. She wanted kids like Zack to feel free to be themselves, without having to deal with the stares and comments. “There were daily reminders of how my son was different,” Ellenby says.
At 5, Zack developed phobias, particularly a fear of entering dark public places where, unlike at an outdoor park or a football game, he couldn’t rely on visual cues to understand what was coming. He was finally getting invited to play dates and birthday parties, but he refused to go into a movie theater or a bowling alley. Instead, he would throw a tantrum at the door. The party invitations dwindled. Ellenby and Reuben abandoned venue after venue and resigned themselves: Having a child with autism meant staying home. A lot.
“We were losing our lives,” Ellenby says. “I wanted to integrate Zack into the world, not help him hide from it. Keith was more willing to take him home. I certainly didn’t want to live like that anymore.”
She worried that Zack was beginning to suffer from depression. “I knew [his mental health] would only get worse with age and increased confinement,” she says.
Conventional ABA therapy was not getting Zack where Ellenby wanted him to be. Although he progressed in the therapeutic setting, she says, “the second he emerged from that room, where props and prompts didn’t exist, he reverted back to a wordless, uncommunicative, tantrum-throwing child.”
She couldn’t watch it anymore. After four years and hundreds of thousands of dollars on therapy, Ellenby fired the ABA consultant and decided to take over.