Brain surgery gave Jacki Edry new vulnerabilities — and new understanding of neurodivergent children

We’re taught that our souls come into this world with a unique tafkid, although it’s not always clear what that might be. But the life path of Jacki Edry, author of Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery, and Faith (2021), has put her squarely on a mission to help children with autism and neurodiversity and their families, a task she has devoted herself to with passion and love

Jacki Edry began working at age 14 with an autistic boy, which led to her working with autistic children at summer camps and then her undertaking a college degree in the field. Some of her own children were diagnosed with autism or neurodiversity, and then ten years ago, she underwent surgery to remove a tumor on her brain stem. Recuperating from the surgery and experiencing symptoms like visual disturbances, vertigo, and sensory overload gave her a firsthand glimpse of what children with autism and neurodiversity experience daily. Today, she sees that experience as a gift, one that bestowed her with deeper insight into the way autistic children experience the world and react to it.

Jacki, who has lived in Eretz Yisrael for over 35 years, combines a matter-of-fact, practical American approach with a generous dose of Israeli grit and perseverance. Currently a speaker and advocate for neurodivergent people in both English and Hebrew, she has been listed as one of the world’s top 50 “Neurodiversity Evangelists” by ND by Design, an organization that promotes employment for neurodivergent people.

Jacki spoke to me from her sunlight-filled home in Netanya, wearing a toque crocheted in lavender and mint, with occasional brief interruptions from the comings and goings of her children and from Panda, their white Labrador service dog.

Early Days

Jacki grew up in the 1970s and 80s in Great Neck, New York, in a culturally Jewish but non-observant family. At the beginning of high school, she joined a group of volunteers working with an adorable five-year-old boy named Mark who was being cared for at home. “I instantly fell in love,” Jacki would later write. “We spent hours teaching him to communicate, perform basic tasks, and speak by imitating his movements and methods of play. Progress was slow, so every time he looked me in the eye or gave me a hug, I felt as if my heart was exploding.”

After her first year at Hampshire College, where her love of animals had led to a pre-vet major, a friend let her know about an opportunity to work at a camp for inner-city, mostly nonverbal adolescent autistic boys. Jacki jumped at the chance. “It was really hard, almost too hard, but it was amazing,” she says. “We took them camping and white-water canoeing. The boys helped prepare the food and ran in the fields. We treated them like capable boys and helped them learn to communicate.”

After a few consecutive summers with these boys, Jacki realized her true life’s calling wasn’t to work with animals, but with challenged children. She switched majors in college. Hampshire College requires students to write a thesis, and she chose to research the effects of exercise on self-stimulating behavior in children with autism. She went to a local school for autistic children to conduct research,  which was considered one of the best at the time for behavior modification (now called ABA), an approach to shape appropriate behavior. “When I saw what was going on, I was appalled,” Jacki relates. “It looked like they were training dogs, giving them candies instead of dog treats if they behaved. Kids who couldn’t sit still were attached to their chairs with a felt belt, and there were padded rooms for kids who threw tantrums. There were no hugs, no high-fives like we’d given the boys in camp.” Her former charge Mark was being “schooled” there, and she avows flatly, “He was a mess.”

She changed her thesis topic to “Educating Autistic Children: An Argument Against Behavior Modification.” Then she graduated and decided it was time for a break.