‘Autism Uncensored:’ Mom tells son’s story in autobiography
Whitney Ellenby was a very driven child. She constantly studied and excelled in school and college. Fearful of losing physical and emotional control, she abandoned parties to return to her dorm room to chart out her future.
With her life going as expected, Ellenby graduated from Georgetown University Law School and landed a job as a civil rights attorney with the U.S. Department of Justice in Washington, D.C. Around this time, Ellenby met her future husband, Keith Reuben, another successful lawyer working at an esteemed law firm.
Ellenby and Reuben fell in love and got married. She had wanted more time to focus on her career before starting a family, but Ellenby unexpectedly became pregnant. During her tranquil pregnancy, her unborn baby passed every developmental and genetic test. When Ellenby gave birth to a healthy, beautiful boy, she was ecstatic. She and her husband named their first-born child Zack.
Like most overachievers, Ellenby had high expectations for her child. She envisioned what his life would be like, just like the map she had created for her own life, filled with hard-earned diplomas and jobs. However, her perfectly controlled world soon unraveled when she noticed that something with Zack was not quite right, as she describes in her riveting autobiography, “Autism Uncensored: Pulling Back the Curtain” (Koehler Books). Not only does Ellenby’s book let other parents of autistic children empathize with her experiences, it encourages all readers to embrace the idea of inclusion of autistic children and adults in our everyday lives.
Something is not right
Although Ellenby had never had a baby before, she noticed abnormal behavior in her child. Zack would nurse from her so vigorously that he didn’t seem interested in eating as much as in enjoying the physical sensation of mouthing.
When Zack turned 1 year old, his development seemed “sluggish.” He could babble, but didn’t seem to vocalize any distinct words. With no desire to stand or walk, Zack preferred to crawl across the floor. Ellenby also witnessed her son’s “seemingly flat affect and lack of animation when others tried to engage him playfully.”
Zack would, furthermore, flutter his hands at his food, expecting his mother to feed him as she observed his “genuine inability to execute the simple pincher grasp.” The only thing Zack responded to at this age was music, but he still could not respond to his own name. Assuming that perhaps Zack could not hear her voice, Ellenby had his hearing tested. His ears worked, so what was delaying his development?
By the time Zack reached 19 months, he still could not speak and preferred to crawl. Growing increasingly concerned by his lack of maturation, Ellenby took him to the pediatric neurology division at Georgetown University Hospital, where he was evaluated by “an entire team of therapists — occupational, speech, physical.”
As they coaxed Zack along to perform simple tasks, Ellenby became distressed as she saw her son fail “early level motor and language assessments, shuffling across the floor with his peculiar crawl, refusing to bear weight on his feet, slapping away books and turning his indifferent nose up at educational toys.”
After her son’s evaluation, Ellenby was asked by one of the doctors, “Does [Zack] line up objects, or seem fascinated by spinning objects?” Ellenby responded, “Um yes … We have these little round stacking cups and he actually takes my wrist and directs my hand to spin them over and over while he watches.”
“Does he point to direct your attention to favored items?” the doctor inquired. Ellenby embarrassingly answers, “Zack has never pointed, not once.”
When asked what Zack’s general behavior was on a daily basis, Ellenby barely whispered, “Flat.”
The doctor then asked if Zack ever looked excited to see her after time apart. Without hesitation, Ellenby shouted, “Yes!”
Closing the door to his office, the doctor said to Ellenby, “Zack meets the medical criteria for autism spectrum disorder. Zack has autism.”
At that moment, Zack was shuffling on the floor to his shoes to rearrange the laces and then shuffling back to a cabinet door. Then he crawled back to his shoes to adjust his laces again, like a structured routine he kept repeating over and over.
Speaking in a softer voice, the doctor explained, “There are many indicators of a developmental delay, but there’s a certain constellation of symptoms that warrant a diagnosis of autism. They present what we’ve classified as three categories: social deficits, language delay, and preservative behaviors, which is what he’s doing now, that going back and forth in the identical pattern. It’s an almost ritualistic mode of behavior, what we call ‘self-stimulating,’ which children with autism tend to engage in, because it gives them a sense of comfort and predictability.”
After receiving the evaluation results, Ellenby fell to the floor in sadness and disbelief. What had upset Ellenby the most was the mystery of autism. Nobody knows what causes autism, and there is no remedy for it. Although about one percent of the worldwide population has autism, less than 10 percent of the people with the condition actually recover from it.
While Ellenby’s husband felt responsible for Zack’s condition, because he thought he gave Zack a concussion, she reassured him, “What Zack has is innate and developmental. It was there all along, but we didn’t know it.”
Applied behavioral analysis
Following the recommendations of the doctors at Georgetown University Hospital, Ellenby decided to create a home therapy program for her son following applied behavioral analysis methodology. She sadly abandoned all thoughts of returning to work, as her husband would now finance this intervention program, which would cost their family $80,000 annually — with not one expense covered by insurance.
According to the Lovaas Institute website (www.lovaa
Because of the “dearth of professionals trained to administer Lovaas,” Ellenby flew in a specialist from New York every month to train her and four “in-house” therapists. In order for Zack to succeed in the program, he needed to sit in an isolated room in his home 40 hours week. As Lovaas observed in his experimental groups, anything less than 40 hours a week would result in failure.
Ellenby had a different perception, writing, “ABA etiquette is spelled out in authoritative pieces.” First, the therapists helped Zack identify “emotions, objects, people, or colors via flashcards and manipulative objects.” These drills were repeated over and over until Zack correctly answered the questions “without prompting.”
As Ellenby explained, “Positive reinforcement for correct answers is supplied to Zack continuously throughout the sessions in the form of food — M&Ms, Doritos, anything Zack is willing to work for.” Any self-stimulating behavior he used to calm himself down (such as hand flapping or staring up at lights for long periods of time), had to be suppressed. ABA also adhered to the concept of teaching by imitation as Ellenby and the therapists constantly told Zack, “Do this.”
After six months of therapy, Ellenby was delighted that her son was finally beginning to succeed in the drills. While he became compliant to sit at the table, he still could not speak by age 3, although he and his mother had developed a physical connection by the exhaustive regimen of therapy.
As Zack turned 4, his only verbal success had been in the phrase “I want,” which he did not use with its proper meaning. Ellenby began to lose faith in the program as her son’s eyes showed “a flatness, a dead stare, stoic obedience has replaced fierce resistance: we have beaten him down and drained his fight.”
Ellenby knew her son was no longer showing progress in the program. Every time she saw a child who was the same age as Zack, she was amazed by their verbal expressions. Comparing her son to his peers, Ellenby fell into an isolated depression confined to the walls of the therapy room in her home.
[Editor’s note: This is part one of a two-part story about Whitney Ellenby and her new book “Autism Uncensored: Pulling Back the Curtain.” Look for the conclusion in our June issue.]
Allison Plitt lives in Queens with her 12-year-old daughter and is a frequent contributor to this publication.