Whitney Ellenby will admit: At times, her approach to raising her son Zack might have looked more like child abuse, especially the day she tried to bring him to a “Sesame Street Live” performance when he was 5 years old.
Zack, now 17, has autism, and like many with the neurological disorder, One of his behaviors is an irrational fear of dark spaces and unknown destinations. His response to entering the dimly lit lobby of the theater was one of pure terror, as though an actual monster, not a beloved Sesame Street character, was behind the curtain.
“The minute the door closed behind him, he dropped to his knees and started screaming and kicking,” says the Maryland-based mother, who details her controversial approach of forcing Zack into situations he couldn’t comprehend in her new book “Autism Uncensored: Pulling Back the Curtain” (Koehler Books).
“To him, Elmo was a character on a flat TV screen. That’s autism — literal thinking,” Ellenby says. “If I could only get him to see that Elmo was real, he could comprehend the purpose of me bringing him here.”
That realization wouldn’t come without a struggle. As Ellenby pinned her son to the ground to calm him, he defiantly latched on to his arm with his teeth. The crowd turned against her, and a man threw an ice-cold soda on her. The struggling mother’s vision was blurry and her tongue was bleeding as she pleaded with the jeering crowd: “My son has autism, I’m doing the best I can.”
It took Ellenby more than half-an-hour to military-crawl with Zack, kicking and screaming, from the entrance of the theater to their seats. When the performance finally began, the boy was calm at last.
That’s when she knew her approach had worked: “It was like we had reached the promised land,” says Ellenby, a former disability rights attorney in the Department of Justice.
Ellenby calls the approach “forcible exposure,” a concept she came up with after years of intensive Applied Behavioral Analysis therapy proved ineffective. That treatment, which Zack first started at 18 months old, cost roughly $80,000 per year and involved 40-plus hours a week of rote exercises to teach the boy language and behavioral skills. Its goal was to get Zack into general education before age 5. But, as that time neared, Zack’s speech was still severely delayed, he lacked basic social skills and had regular tantrums.
“I had this gnawing feeling that it was never going to happen for him,” she says. “We were stuck in this clinical, sterile therapy room trying to rewire his brain … We were cut off from the ordinary world.”
After a particularly frustrating therapy session, she had a light bulb moment: If he was going to have tantrums anyway, she decided, they might as well be for the purpose of acquainting him with the world he was cut off from.
She repeated the painful process of dragging him into places he feared, such as movie theaters and public pools, for years, and the outbursts got less and less severe with every outing.
“Each time we shaved our [tantrum] time 10 minutes,” she says.
‘What I did was an act of love and protective restraint so that he could realize that this exaggerated fear he had was unfounded.’
By the time Zack was 6, after about a year of her approach, he had joined his peers in general education and was able to go places he’d previously feared without incident. Ellenby’s goal shifted from getting Zack to act “normal” and being able to function in public places to him actually having fun. He had play dates with his peers, took up activities such as yoga, biking and swimming and attended concerts, including a recent Pat Benatar show.
“There’s nothing he won’t try now,” she says.
Her approach hasn’t been widely embraced though. Disability activist Tonia Christle, who has cerebral palsy, writes on her blog that Ellenby’s method is a form of abuse. “That is you traumatizing your child,” she writes. “That is you forcing compliance. That is never OK.”
Ellenby admits the method is harsh, but she says it’s effective. “What I did was an act of love and protective restraint so that he could realize that this exaggerated fear he had was unfounded.”
Now a 10th grader in his public high school’s special education program, Zack is on track to graduate by the time he’s 21 and enter the workforce. It all makes that first struggle at “Sesame Street Live” worth it in the end, Ellenby says.
“That moment was the most rewarding experience of my life,” she says. “He went from being a child who was a misery to take out to being my best friend.”