People with intellectual disabilities are seven times more likely to experience sexual abuse compared with others, according to an investigation published by NPR earlier this year.
That series showed a hidden epidemic of abuse occurring in schools, homes and treatment centers that often goes unreported and unpunished.
One Bay Area family shared what it means to fall victim to this type of abuse. To protect their privacy, we have agreed to use middle names and remove other identifying details.
Seventeen-year-old Elisha is one of roughly 650,000 Californians living with an intellectual or developmental disability. She has been diagnosed with autism, ADHD, OCD and emotional disturbance.
The first signs of trauma surfaced when Elisha was eight.
Her family received word from her school about concerning behavior. She had been acting out in the classroom — pulling things off the walls, making sexual gestures and touching herself in front of others.
Child Protective Services was called, and an investigation revealed that Elisha had been exposed to pornographic videos at a young age by her stepfather.
“It was devastating. All of us have faced trauma, the whole family,” says Elisha’s grandmother, Jean.
After the incident, Elisha went to live with Jean, a retired social worker, and her grandfather. The couple are now her legal guardians.
But despite their efforts to provide a safe environment for their granddaughter, Jean says a pattern of trauma continued. While attending a high school for students with intellectual and emotional disorders, Elisha confided to her grandmother that she was pressured to perform sexual acts by other students.
One of these incidents involved oral sex on the school bus. Jean remembers how upset Elisha was that day after school.
“She told me she felt like she had to do it,” Jean says. “As a parent your heart just goes out, you know, if you have a child and your child hurt, you hurt too.”
Jean says when she called the staff of Elisha’s school to inform them, they initially denied the event had happened. After further investigation, she says the school decided to keep Elisha away from boys on the bus. But another incident occurred — this time involving sex on school premises.
“Of course nobody’s listening,” Jean says, “because nobody listens to this group of young kids.”
A school official said they investigated both incidents and “prioritizes the safety of its students above all else.” The school keeps a student-teacher ratio of 3-to-1.
Elisha has faced trauma outside of school as well. At 14, she was sexually assaulted while walking in a local park, leading to a hospital visit. Jean says the man, a stranger, had convinced her granddaughter he was her boyfriend.
“She’s easily led. She’s vulnerable,” says Jean.
As of now, no one has been charged with the assault. And what worries Jean most is will happen to her granddaughter when she’s no longer around to look out for her.
“We live with that every day,” she says.
The vulnerability of people with intellectual disabilities is something Karyn Harvey says she sees all the time in her therapy practice in Baltimore. Harvey is one of a small number of psychologists nationwide who specializes in sexual trauma in this group.
She says one of the reasons they become targets is because people with autism, Down syndrome and other disorders can be desperate for acceptance, but may not understand when something is sexual in nature.
“And then they’re accused of 'wanting it,' when that comprehension wasn’t there, and when really the heartfelt desire was to just have some interaction and inclusion in a world that’s been excluding them,” Harvey says.
Harvey oversees the psychology department at The Arc Baltimore, an advocacy organization for people with intellectual disabilities.
She believes that schools and treatment centers often focus too much on teaching people with intellectual disabilities to listen and follow rules. According to Harvey, these children are taught from a young age that the adults that care for them know best. The word she uses to describe the culture is “compliance.”
“I’ve been in situations where that ended up being to tolerate abuse,” Harvey says.
And people with intellectual disabilities, she says, don’t always have the words to express themselves when sexual trauma occurs. When they do speak out, they may not be believed.
In these cases, Harvey says trauma can manifest in behavior that’s often perceived as a person “acting out,” instead of as a cry for help.
Harvey says caregivers need to be trained how to listen better and read the signs of sexual abuse in this vulnerable group. She wants to empower those with intellectual disabilities to speak up in potentially dangerous situations.
“They need to have that voice,” Harvey says, “to speak up, to stand up, to be heard.”
As part of her work, Harvey trains care providers around the country about trauma experienced by people with intellectual disabilities. And in May she spoke at a San Jose-based nonprofit that supports families with special needs children called Parents Helping Parents.
One of the services provided by the center is a workshop designed to help kids with intellectual disabilities understand social boundaries, and who to turn to when abuse happens.
Pramila Sindhia, a former medical instructor, teaches the classes three times a year to students ages eight to 18 and their families.
"These children are so delicate because they are trusting," Sindhia says.
Sindhia has firsthand experience witnessing this vulnerability in people with intellectual disabilities. She has a daughter with autism.
"She can say the most private of things to the mailman," Sindhia says. "So we want to teach kids what’s appropriate, what’s not."
Trudy Grable, the Director of Community and Family Services at Parents Helping Parents, brought the Social Boundaries workshop to the organization. Having raised a daughter with special needs, she's observed gaps in the sexual education of people with these disorders.
Teaching them about the risk of abuse, Grable feels, has gone largely unaddressed by regional centers and schools in California.
"It is a system that needs to take a good hard look at how we are going to protect our most vulnerable citizens," she says.
In March, State Assemblyman Jim Frazier announced the launch of select committee focused on the well-being and safety of the hundred of thousands of Californians living with intellectual and developmental disabilities.