This is the second half of a story about Whitney Ellenby’s compelling autobiography, “Autism Uncensored: Pulling Back the Curtain” (Koehler Books), in which she describes her life with her autistic son, Zack.
Whitney Ellenby learned her son Zack had autism when he was 19 months old. At the recommendation of a pediatric neurology team at Georgetown University Hospital, she enrolled him in Applied Behavioral Analysis therapy.
Applied Behavioral Analysis therapy required her son to be in an isolated room with a therapist for at least 40 hours a week reviewing “emotions, objects, people, or colors via flashcards and manipulative objects.” According to Ellenby, the psychologist who developed the therapy in the 1950s, Dr. O. Ivar Lovaas, predicted that if a child receives less than 40 hours of instruction per week, he would fail. Zack showed progress during his first six months of therapy, but his development plateaued after another six months, and both Ellenby and her son fell into a state of disappointment and depression.
As many autistic children use “perseverative” behavior (such as repetitive hand flapping or staring at spinning objects) to calm themselves down, the Lovaas Model of Applied Behavioral Analysis therapy tries to suppress these natural instincts — a method which Ellenby finds “authoritative.” She claims that many pediatric neurologists also believe that by denying a child his natural tendencies to cope with fear or anxiety, Applied Behavioral Analysis takes away a child’s individuality and innate personality.
Although Zack could not verbalize his anger to his family, he rebelled against the rigid structure of therapy in his own ways. Unable to sleep, Zack kept his parents up all night with tantrums. When Ellenby or her husband went to soothe him, they found Zack had scratched off the paper on the walls of his bedroom and had destroyed all of his books and toys.
Venturing into the real world
Many families with autistic children usually isolate themselves in their homes, because their children can impulsively fly into fits of rage over any perceived fears or obstacles.
As Ellenby had decided to scale back on the number of hours Zack was receiving Applied Behavioral Analysis therapy, she chose a different approach with her son, who threw temper tantrums every time the family left the home.
In one scenario, Ellenby’s family attempted to attend a birthday party, but the moment they got into an elevator, Zack began screaming, biting himself, and banging his head against the door to get out. After this incident, Ellenby figured out what triggered her son’s temper tantrums: “His fear of the unknown, because he could not decode the world outside of his immediate view in those indoor spaces.”
Unlike other kids with autism, Zack was not overly sensitive to noise and crowds.
In the most defining moment of the book, Ellenby decided to take her son into an auditorium to see a show about Elmo. As she expected, Zack threw a tantrum as soon as they entered the public indoor space. While Ellenby spent more than half an hour trying to calm him down, she was able to prevent her son from fleeing the scene.
The moment Zack saw Elmo on stage, he calmed down and stopped struggling. His eyes were riveted to the stage in deep concentration until the end of the show. As Zack smiled at his mother after the performance ended, Ellenby decided that her “experiment” was a success.
Ellenby took Zack to other public events where she found he learned more by experiential learning than by sitting in an isolated room trying to imitate Applied Behavioral Analysis concepts. Choosing to take Zack to a movie theater, she first informed the audience that her son was autistic and would probably struggle with her before the movie. With the public’s approval, Ellenby tried to subdue Zack, who once again became calm when the movie began.
Similar to his behavior at the Elmo performance, Zack was fixated by the movie on the screen and said nothing until the show ended. Realizing that Zack was finally making a breakthrough, Ellenby accompanied him on more outings — including a visit to a water park, where a gang of tough teens helped her son descend a scary water slide.
Ellenby was surprised by the amount of support she received from the public when she explained that her son was autistic and may behave in an unusual manner. Zack wet himself on a subway, and as Ellenby explained her situation to the passengers, they gave her their own tissues and wipes to help her clean her son.
Ellenby gave birth to her daughter, Cassie, when Zack was 5. As Zack realized he was no longer the center of his mother’s attention, he began to misbehave. Crying because he believed his mother favored the baby over him, he was finally able to articulate his feelings by saying, “Baby is Mommy favorite. Baby is love of Mommy life.”
When Ellenby responded to Zack that he was “the first love of her life,” she had a realization: “We have never had a true conversation, and never an exchange about anything as important as this. And I realize at this moment that there are still many crucial truths about Zack that I have yet to uncover. Does he feel love deeply, and does he feel it for me? … He is capable of experiencing jealousy and loss as much as any other person, maybe even more?”
After his initial resentment, Zack learned to love and protect his sister. In one instance, Ellenby baked the children brownies and decided to hide them in the kitchen so she could share them at a later time. When she later checked in on her kids, she discovered Zack had found the brownies and was sharing them with 1-year-old Cassie.
Zack learns to conquer his fears
As Zack became less fearful interacting in the real world, he had less frequent tantrums. Consequently, Ellenby decided to abandon Applied Behavioral Analysis therapy. On a family trip to Disney World, where Ellenby had to provide the hotel with medical documentation of her son’s autism, Zack was a different boy — laughing in the amusement park and finally pointing out to his parents something funny that he saw.
When Zack turned 7, Ellenby enrolled him in the neighborhood public elementary school, where he would be fully mainstreamed with his peers in the first grade. While Zack would be with his classmates for the majority of the day, he would also be pulled out of class for special-needs instruction.
The therapist had told Ellenby never to disclose Zack’s condition, but she thought differently when preparing a presentation for her son’s class about his autism. “Concealment of Zack’s diagnosis suggests shame, and my purpose is to educate, not obfuscate.”
During the presentation to the class, Ellenby explained to the children, “Zack has a disability called autism, and it’s a condition that affects his brain. His brain isn’t better or worse than yours, it’s just different.”
She also told the class that Zack learns from repetition, so he would be watching his classmates’ behavior as an example of what to do.
Ellenby’s story ends happily as Zack was “assaulted by peers, not with cruelty, but exaggerated expressions of kindness and instruction.” When his mother dropped him off at school, Zack told his mother “goodbye,” literally cutting the cord between them.
When Zack stopped having temper tantrums, he learned that he had overcome his phobias. Reflecting on the experience of helping her son, Ellenby recounts, “I’m not just a better parent, I’m a better person because of what Zack has unearthed in me.”
Ellenby founded a charitable foundation more than 10 years ago called Autism Ambassadors for people with autism and their families. To help these families leave the isolation of their homes, Ellenby established monthly outings at various venues (such as movie theaters and water parks) where people can meet and not be shocked when others “erupt into unconventional behavior.” So far, Ellenby has recruited more than 600 families to join her organization.
Allison Plitt lives in Queens with her 12-year-old daughter.
