Date Published: November 4, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first people who joined.
Jill Escher knew almost before Jonny’s birth that he would be different from her first son. Jonny moved less before he was born, and he played less after he came into the world. He didn’t meet his parents’ gaze, try to share things with them, point to what he wanted, respond to his name, or babble. When he was 1, his doctor was concerned by his unusually large head size. But a scan did not show anything wrong.
Jill Escher discussed Jonny’s speech and social delays at his 18-month and 2-year-old check-ups. But the pediatrician believed he was a physically robust boy who would catch up.
And Jill, who did not know anyone with autism, thought that Jonny might just be following his own path, one in which he found twirling fans more interesting than toys. “We called it ‘the way of J.’ He was like an artist in his own world, learning his own way,” she explains.
Months later, the doctor referred Jonny to a pediatric neurologist. The neurologist walked into the waiting room, watched Jonny for a few moments, and knew: Jonny had textbook autism.
This would lead Jill Escher down a new path of her own, one that involved a career change, leadership of an organization for severe autism, and involvement in research, including the SPARK autism study.
A Baffling Diagnosis
By the time of Jonny’s diagnosis in 2001, his mother had learned about autism. “But it didn’t seem possible to me,” she says. No one in her or her husband’s family had ever had autism, and she had had a problem-free pregnancy. She didn’t have any conditions that could increase the chance of autism, such as diabetes during pregnancy or a premature delivery.
“We were really baffled by this because it came out of absolutely nowhere. We had no explanation for it, and none of our doctors had an explanation for it. Like every parent you’re in a level of denial. You think, I don’t know why this is happening, but there must be something we can do about it, right?” she says.
The Eschers, who live in Northern California, put Jonny in early intervention programs. They tried any therapy that seemed safe: applied behavior analysis, speech therapy, occupational therapy, listening therapy, a gluten-free diet, dietary supplements, and Floortime, which is a relationship-based intervention.
But nothing seemed to help, she says. “Absolutely nothing we did, from the most conventional treatments to the more marginal, seemed to make a shred of difference. Jonny’s case was very severe and intractable and remains so to this day.”
Could it be Autism, Again?
When Jonny was 7, his sister Sophie, the youngest of the Eschers’ three children, was born. At the time, Jill says, she was told that having another child with autism was unlikely. That possibility seemed even more remote when she learned she was having a girl. Girls are much less likely to have autism than boys. Since then, researchers have found that 19 percent of the younger siblings of children with autism also developed the condition.1
By the time she was 1, Sophie was showing signs of autism, although she was not irritable like Jonny. “I was kind of hopeful that maybe she had something, but that something wasn’t as severe as autism,” Jill recalls.
But it was autism. Sophie lost the few words she had, and she never regained speech. Her mother took her for second and third medical opinions, but the answer was the same. Autism occurs along a wide spectrum of IQs, skills, behaviors, and verbal abilities. Like Jonny, Sophie requires constant supervision and help with everyday skills. They share a love of music.
Now 15, Sophie makes some sounds to communicate, which her family understands. She does not like using electronic devices or picture cards to communicate, which some people with limited verbal skills prefer to use.
Jonny, who is 22, does not use electronic devices or picture cards because he kept destroying these communication systems. “He destroys every electronic device handed to him, including six iPods in one day. Despite this propensity for destroying things, he’s a very, very loving guy. And I think he destroys things simply because he can’t harness his cognitive energy towards anything that’s constructive. It’s just the way his brain is wired,” Escher says.
Challenging Behavior in Autism
Jonny’s behavior became harder for his family to manage as he grew older and stronger. He certainly does not intend to hurt anyone, Jill explains. “I think he is the gentlest, sweetest, most loving person on the planet, but he has low impulse control, and sometimes he lashes out simply due to frustration.”
By the time he was 20, his family reluctantly began to consider other living arrangements for him for safety reasons. “I always thought and hoped that Jonny would live with me forever, but, heartbreakingly, it got to the point where that was not feasible.”
State developmental disability agencies may provide housing to adults who qualify for their services, if funding is available. But Jonny’s behavior was considered to be too challenging by local service providers. “No programs would accept him in our area,” she says.
So the Eschers arranged for him to move into a home with caregivers around the clock, with a little financial help from the state. People like her son, particularly those with aging parents, will need long-term supports, but policy-makers and communities are not focusing on it enough, she says.
A Career Change to Help Others with Autism
She wants to draw attention to the housing and service needs of these adults. She serves as president of the National Council on Severe Autism (NCSA), an organization that advocates for services and research. According to NCSA’s definition, people with severe autism require continuous support and have limited or no speech, intellectual disability, and sometimes unsafe behaviors. These behaviors may include hurting others or themselves, and destroying property.
A former lawyer, Jill became a real estate investor who provides low-income housing for adults with developmental disabilities.
Her daughter, Sophie, lives at home, and Jill does not expect that to change anytime soon. Sophie is easy-going and cheerful. She enjoys being around other people. “We do absolutely everything together,” Jill says. “We ski ─ she’s an excellent skier ─ we ice skate, we swim, hike, and travel together. She loves concerts and dance.”
But Jill worries about her happy and trusting daughter, who cannot easily communicate. Women like her are more vulnerable to abuse, Jill says. “She will live with us for as long as my husband and I are able.”
She hopes that autism research will provide a path forward. She joined SPARK, the largest study of autism, soon after it launched in 2016. She, husband Christopher, Jonny, and Sophie all contributed saliva samples for DNA analysis by SPARK. SPARK has not found any genetic causes of autism for Jonny or Sophie as of 2021. Jill serves on SPARK’s Community Advisory Council.
Jill is involved in research besides SPARK. She is a co-author of several articles in scientific journals about possible environmental causes of autism.2 In particular, she is interested in changes to parents’ egg and sperm cells caused by outside influences, such as certain medications and anesthesia.
“I’m a very, very ardent proponent of autism research because I have looked at countless cases like Jonny’s. There are no answers for us. We have no answers for these families, and, for a great many, it’s a desperate situation.”
Interested in joining SPARK? Here’s what you should know.
Photos reprinted with permission of Jill Escher.