By Kathryn Streeter
Photo By Emily Korff
After years of sending her autistic son Zack to leading therapists and hemorrhaging hundreds of thousands of dollars, Whitney Ellenby woke up, angry. The system was failing Zack and in the process tearing her world apart. “I realized I’d been fed false hope. Zack’s progress was negligible. He wasn’t any closer to integrating with his peers and leading a normal life.” She felt duped by the inflated numbers providers offered, and discouraged about Zack’s future. It was a dark time, but Ellenby’s epiphany helped reorient her notion of what success and happiness looked like for Zack. It proved life-changing.
Breaking with traditional approaches.
Ellenby was inspired to write her brutally honest book, Autism Uncensored: Pulling Back the Curtain, because she realized that what Zack needed was real-life experience, something absent in conventional approaches. Interventions may have value to varying degrees, Ellenby is quick to point out, but in isolation, are not balanced with commonsense. Ellenby witnessed that Zack’s accomplishments, performed within the safe confines of the therapy room, didn’t transfer to the real world. “Real world exposure is key for these concrete literal thinkers,” Ellenby insists. She found it distressing that increasingly, home and therapy made up Zack’s life. With that insight, she boldly moved to integrate Zack into public life.
Letting Zack be Zack in the real world.
“If we want our children with autism to participate in our world in a meaningful way, we have to let them be in their world,” said Ellenby, providing their behaviors aren’t aggressive and don’t interfere with the child’s ability to learn. Originally, she followed the experts’ advice, to suppress Zack’s urges to flap, bounce or yelp in public but she pivoted, coming to terms that these were defining characteristics of her son. “Autism isn’t something he has. It’s who he is.” With that in mind, Ellenby flouted conventional thinking, which strives to eradicate autistic tendencies so a child looks “normal”. Her approach strayed from norms, but she believed that “if I was going to respect Zack like I would any other person I would need to strike a balance.” For Ellenby, this meant helping Zack learn to discern when an occasion required a certain type of behavior and when he could completely be himself. This strategy, explained Ellenby, builds self-esteem because its core mission isn’t to fundamentally strip them of natural characteristics, but instead seeks to grow stronger situational awareness. Ellenby wants an authentic, animated Zack. “I want Zack to know it’s ok to be himself, no matter how unusual it looks.”
Uncovering effective ways to problem-solve:
Many characteristics common to autism involve embarrassing public outbursts, driving parents to keep their child home. Ellenby advocates getting kids out to confront their phobias and ultimately, learn to navigate the real world. “When Zack’s anxieties took over, it felt like we were losing him,” Ellenby confessed. The nightmarish public meltdowns reinforced the need for full disclosure. Ellenby would tell those around her that Zack was autistic. “I would say, ‘I’m doing the best I can. I know it’s wildly uncomfortable, but tolerance, while I work to calm my kid, is the disability ramp you can give me right now.’” The response from the public was overwhelmingly supportive and kind-hearted, Ellenby said. She calls out parents to be open in public and the public, to offer enormous understanding. Ellenby explains that our communities are equipped with physical accommodations for the disabled, but that autism requires behavioral accommodations. “Zack is who he is today because the general public helped us get there.”
Ellenby’s call to action:
It’s never too late! Get your child into the real world! Ellenby wrote Autism Uncensored for the parents: “These are parents in pain.” Many are ‘curtseying to the norm’ as Ellenby once did, tirelessly intervening per the experts, to extinguish all signs of autism. “Autism is an epidemic,” Ellenby reminds us. Yet, though it’s all around us, parents feel shame, experience ostracism and in desperation chase every new ground-breaking intervention, paying exorbitant sums only to realize miniscule gains. Though the media and providers are loath to talk about it, full recovery is extremely rare, that ‘one-in-a-million’ case, as Ellenby puts it.
Get real. Ellenby’s concrete recommendations for parents hungry for answers:
1. Balance therapy with real world exposure, doing all the things you would do if they were typical children. They won’t be living in those therapy rooms.
2. Lose the shame. Take your child into public. You have a ‘duty to educate’ the public; seize these moments for everyone’s sake.
3. Line up those playdates, even if your child doesn’t seem interested. They need to be in the company of peers, not just parents and therapists.
4. Feed their preferences. Sports? Going to the mall? This engagement is a portal into understanding your child and they, you.
5. Talk to/about your child as if they understood everything you’re saying.
6. Talk candidly about the challenges they face, praising their perseverance. Name specific things they do well to build their self-worth.
7. Trust your gut regarding interventions. Don’t let providers talk you into progress you’re not seeing. You want your child owning and using concepts outside of therapy, in the real world.
It took life unraveling for Ellenby to realize that her goal for Zack—to eventually be symptom-free and look normal—wasn’t big enough. Today, she aims deeper, optimistic that Zack will achieve a high quality of life— “becoming fully integrated into society, forming attachments, doing something he loves and getting paid for it, having relationships, being a contributing member of society, and most of all, someone who is genuinely happy”— regardless if symptoms persist his whole adult life. This is Ellenby’s new picture of success, one she wholeheartedly believes is worth sharing.
For more information, visit WhitneyEllenby.com and connect on Facebook.