Whitney Ellenby writes her truth about raising a son with autism in “Autism Uncensored: Pulling Back the Curtain.” ($19.95, Koehler Books) Not everyone is going to like it, and that’s just fine with her. In fact, she’s been reviled for writing what she’s written.
Ellenby was a lawyer in Washington, D.C., working in the Disability Rights Section of the Department of Justice, when she and her husband, Keith, became pregnant with Zack, who is now 17.
Ellenby doesn’t pull any punches about the first five years of Zack’s life. When he was born, she had trouble connecting with him. He didn’t sleep well. He didn’t respond in ways she thought he should. His expressions were just flat. He never pointed for anything. Yet, how should she know this wasn’t normal? He was a first child.
She doesn’t hide her bitterness when the diagnosis came, and with it, a recommendation for 40 hours a week of therapy. This therapy came with a false hope that maybe he could be trained to alter his behavior so much that he appeared normal.
She dutifully brought her son to Applied Behavior Analysis therapy for months on end. Some behaviors would get better for a time period, or he would move from one behavior to another, but she became aware that it wasn’t working, that he hated the therapy, that it felt like punishment.
She writes that felt like she was losing herself. She looked at her work clothes and realized she was no longer that person who wore those. She felt like she was becoming more and more isolated. She couldn’t take Zack to public places because he would freak out. He started doing things like smearing his poop all over his room at night or eating non-food items. She writes “So this is my life. I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”
The book, she says, was written for parents like her who are struggling and in pain. “When you decide to become a parent, it’s a leap of faith,” she says. You expect a normal baby. You don’t expect a Zack. “It’s not natural to have a total surrender of your identity,” she says. “Are you expected to be happy and thrilled or is there a natural amount of anger and bitterness?”
She has experienced backlash after writing the book, she says, mainly from some other parents of children like Zack and from adults with autism who are high-functioning. “It’s just terrible to tell my truth,” she says, of the messages she has received. “I’m offended that your offended,” she says about her critics.
The way she felt, she says, is very normal. “It’s helpful to acknowledge it,” she says.
Ellenby spent five years trying to figure to figure out what went wrong and blaming herself as well as trying to find a way to make him more like a neurotypical kids. She wants parents to “shed the shame. Don’t waste time blaming themselves,” she says. “The numbers are huge and we don’t know why. We don’t know what’s causing it, but it isn’t anything we intentionally did.”
The book takes readers through those dreadfully frustrating years, but there are triumphs for sure. The highs were incredibly high, and the lows were incredibly low.
One of the things Ellenby did that experts discouraged her from doing was exposure therapy to the public spaces that Zack feared.
Ellenby created a routine of bringing Zack to places like the movie theater or a “Sesame Street Live” performance. Zack would have an all out tantrum and often the audience would be hostile to Ellenby until she started explaining to them what was about to happen. She would tell them that her son has autism and that he is afraid, but if they will just listen to him scream for a few minutes, she would talk to him and tell him what was going to happen, and suddenly he would realize that Elmo is on stage and that’s magical or that a movie is going to start and that’s pretty cool.
“Our kids can do so much more than they think they can do,” she says.
Through doing this, Ellenby made sure that Zack was able to go on the high slide at the water park, even though she was too chicken to follow him down, or go to a rock concert.
Her work with Zack also inspired her to create a nonprofit organization in the Washington, D.C., area to offer sensory-friendly events for families of children with autism.
Instead of chasing a cure, she’d like national organizations to build in more services for families, to advocate for more opportunities for people with autism. She’d like autism to be treated like any other disability, with accommodations in public places.
“Our kids are innocent travelers with a disability that makes the world hard to navigate,” she says. “If they are flapping, own it. Don’t feel ashamed of it. Get them out into the real world. Don’t keep them at home because you’re embarrassed. The only way to crystallize skills is to practice them in the real world.”
One of the things she wants to encourage families with a new autism diagnosis to do is to try lots of therapies, but to trust their gut. If something isn’t working or if their child plateaus, try something else.
She wishes she had done more with real world experiences and playdates when Zack was younger rather than him spending his time in 40 hours a week of therapy that didn’t work.
Zack started out in regular classes with some support, but then as the gulf between him and his classmates became wider and wider, it became painful for Ellenby to watch. She had to get over the idea that the experts had given her early on that Zack could “recover” from autism. It was about letting go of the fantasy and pretense. Once she accepted that he’s never going to “recover,” and “it was strangely liberating,” she says. “We acknowledged we had set the bar at an unrealistic place.”
For her, that means she looks to a future of Zack living with assistance and maybe one day having an entry-level job that works for him.
“This is who he is, this is who he’s meant to be,” she says. “Call the thing what it is and ask for what you need.”