A course for young people with intellectual disabilities, designed by School of Medicine faculty and students to cut the risk of abuse, contains lessons for everyone
Talking to their adolescents about sex makes many parents squirm, yet studies repeatedly show that kids who receive accurate, comprehensive information on sexuality from multiple sources go on to have healthier relationships and lower rates of teenage pregnancy, sexually transmitted infections, and sexual abuse. But all too often sex education overlooks those who may need this information the most: young people with intellectual disabilities.
“There’s a common tendency to view people with intellectual disabilities as ‘asexual’ and minimize or deny the fact that they have sexual desires like anyone else,” said Laura Grubb, a pediatrician at Tufts Medical Center and assistant professor of pediatrics and public health and community medicine at Tufts University School of Medicine (TUSM). “I remember the mother of one of my patients who believed her intellectually disabled teenager wasn’t interested in dating, even though she knew he had crushes on girls in his class.”
Such ignorance is risky, Grubb said, because the intellectually disabled are particularly vulnerable to sexual exploitation and may find it difficult to be assertive and avoid unsafe or nonconsensual practices. In fact, data suggest that intellectually impaired adolescents are up to seven times more likely to suffer abuse than peers without such disabilities.
A team of TUSM faculty and students and Tufts Medical Center clinicians led by Grubb is working to reduce that risk as part of a sexuality-education course for intellectually disabled students at Josiah Quincy Upper School (JQUS), a public high school close to Tufts’ health sciences campus.
The course grew out of informal talks on health and hygiene given by Tufts practitioners to special needs students at JQUS. In 2016, when school personnel asked that the talks be expanded to include birth control and pregnancy, Grubb and her colleagues realized they needed a formal curriculum.
Karen Saroca, then a third-year Tufts Medical Center triple board resident in pediatrics, adult psychiatry, and child/adolescent psychiatry and now an assistant professor of psychiatry at TUSM, began digging into the subject.
At the time, there were few sexual-education curricula designed for the intellectually disabled. Eventually she and pediatrics resident Frinny Polanco Walters zeroed in on the science-based FLASH curriculum developed in Washington State’s King County. With Grubb as a mentor, the team began to adapt it for the JQUS students, and first tested the curriculum in the fall of 2017.
“Our trial run immediately revealed a lot of challenges,” Saroca said. “For example, the original curriculum included short, multiple-choice quizzes for students before and after lessons. It was not a good match for our students, some of whom could barely read.” The team scrapped the quizzes, simplified the lesson vocabulary, and built in more time to repeat and reinforce content.
The curriculum now includes ten weekly sessions offered each spring to mixed gender classes of students, ages fourteen to twenty-two. Lessons incorporate lots of real-life scenarios and role play, from how to find out if someone would like to hold hands (ask them) to whether it’s OK to break a promise not to tell on a neighbor who asked you to take off your clothes (absolutely yes).
Examples and handouts make ideas tangible. During discussion of birth control, students can examine condoms, IUDs, and other contraceptives. A grab bag containing items such as deodorant and tampons makes discussion about hygiene more concrete. Instead of quizzes, the team relies on focus groups and other feedback from parents and JQUS teachers to see how well students are absorbing the lessons.
“Throughout the classes, we emphasize key principles about boundaries, appropriate behavior in public and in private, and what’s healthy in a relationship,” Grubb said.
The project offers young physicians and medical students the chance to develop skills as community educators and advocates. Approximately twenty-five TUSM students have participated in the course through teaching or curriculum development, which counts toward their fifty-hour Community Service Learning Program requirement and their student-as-teacher requirement.
“The curriculum has really gotten its sea legs, and the medical school students are so comfortable talking frankly about these subjects,” said Mark Knapp, a JQUS special education science teacher who has seen the course evolve. “It’s great for our students to hear this information from young adults.”
Grubb, along with triple board resident Ireen Ahmed, pediatrics resident Laura Coyle, and Cassandra Scott, M20, received the 2018-2019 Tisch College and TUSM Community Service Learning Faculty Mini-Grant, given to an initiative that addresses community-identified needs and educational goals for TUSM students.
The grant allowed them to include more hands-on materials and professional education, and could lead to multi-language materials and online curricula for the course. Presentations to the Society for Adolescent Health and Medicine have brought the curriculum to a national and international audience.
“I’m just super grateful that we have this program,” said Knapp, who would like the course to run a full-year rather than just one semester. “It fills a lack in sex-ed for kids who are incredibly vulnerable.”