In November, OAR’s Board of Directors authorized funding for eight applied autism research studies in 2024. These new grants, totaling $297,569, bring OAR’s total research funding to more than $5 million since 2002. This article is the third of eight previews to be featured in The OARacle this year.
Sexual and reproductive health is a critical part of a young person’s education. Sexuality education has been linked to lower rates of sexually transmitted diseases (STIs), teenage pregnancy, and increased use of contraceptives. It can also be a protective factor in childhood sexual abuse and intimate partner violence.
Unfortunately, many autistic young people do not receive sex education in school or in the community, according to a 2020 study. As a result, when they reach adulthood, they do not have the knowledge they need for their sexual health and mutually respectful relationships.
While there are programs that teach autistic youth about sexuality and relationships, they are mostly aimed at older adolescents and adults and do not involve parents. Studies show that younger children may respond to such interventions, and involving parents equips them to guide their children through their teenage years and reduces the risks and dangers.
Lindsey DeVries, Ph.D. and Caitlin Middleton, Ph.D., conducted an initial study for parents of autistic youth in 2022 that yielded promising results. They decided to extend this research with this one-year OAR-funded study, A randomized controlled trial of a parent-focused sexuality education program for autistic youth. The study will evaluate the Birds & Bees program, a sexual health education group, compared to a recently published resource guide, Navigating Puberty, Sex, and Sexuality: A Guide for Supporting Autistic Teens and Adults, developed by researchers at the Vanderbilt Kennedy Center.
Their study will:
Dr. DeVries is a licensed psychologist and assistant professor at the University of Colorado School of Medicine in the Pediatrics Department with expertise in child development, autism spectrum disorder, and other neurodevelopmental conditions. She has expertise in supporting school-age and adolescent autistic children and their families in navigating gender and sexuality, as well as implementing and making modifications to evidence-based treatments to best support autistic youth and their families.
Dr. Middleton is a licensed clinical psychologist and assistant professor at the University of Colorado School of Medicine in the Pediatrics Department with expertise in child development, autism spectrum disorder, and gender and sexuality in autistic youth. Her clinical and research specializations involve the assessment and treatment of neurodevelopmental conditions and in particular co-occurring mental health conditions in autistic youth.
The researchers will recruit six young autistic adults for a young adult stakeholder advisory board to help inform recruitment strategies and research. They will also recruit 40 sets of parents with an autistic child of any gender, ages 10 to 18.
The advisory board will be asked to inform many aspects of the project, such as recruitment strategies, and share their experiences of sexual and reproductive health education, particularly from their parents. The board will provide advice to the researchers for how to best disseminate meaningful information to the autistic community.
During the summer of 2024, Dr. DeVries and Dr. Middleton will each run a Birds & Bees group simultaneously with four to six parents in each. At the same time, 10 parents will read the Vanderbilt guide. After those groups are completed, the researchers will meet with the advisory board for input and guidance for the second group, which will again consist of two Birds & Bees groups and 10 parents reading the Vanderbilt guide.
The Birds & Bees program is an eight-session, 90-minute, weekly program delivered via telehealth. Parent pairs assigned to the Birds & Bees must agree that at least one parent will attend the program consistently. Each session covers a topic related to puberty, sexuality, and changing bodies. The sessions will consist of a check-in, review of homework, education, and group discussion. At the end of each session, parents will be asked to choose one of three potential homework options to complete before the next session.
The researchers developed content areas by reviewing the literature of previous focus groups and pilot studies as well as existing curricula for individuals with developmental disabilities. They also conducted focus groups with autistic adults and parents of autistic youth in their pilot study and incorporated that feedback into the Birds & Bees program. Because of the potential variability in factors like family values and child communication skills, for example, the content will be tailored to the goals parents provide in their phone screening. The program will also accommodate the needs of autistic learners, such as sensory differences, social communication, visual supports, and increasing flexibility.
The Vanderbilt Kennedy Center guide is an 11-page online resource guide about sexual health for parents of autistic youth. Content areas include how to have conversations about sexual health and information about puberty, reproduction, masturbation, menstruation, relationships, consent and safety, and sexually transmitted infections (STIs). To date, there is no published research on this work.
Pre- and post-outcome assessments of the Birds & the Bees and the Vanderbilt Kennedy guide will measure:
Goals created by parent participants will be used to assess functional outcomes with options that include common home, community, and/or school behavior change, such as communicating with a healthcare provider about sexual health, for example.
Although autistic youth are not directly participating in the group, they will be asked to complete one questionnaire before and one after the program via Zoom. A researcher will be present to ensure they understand the content and can complete the measure without parent support, which could potentially bias responses. The questionnaire assesses their experience in communicating with their parents about sexual health topics. To the researchers’ knowledge, this will be the first study to use autistic youths’ direct report about sex education intervention in which they are not directly involved.
The Birds & Bees program was developed to support parents of autistic youth to learn about sexual health topics while acknowledging the intersectionality of identities, importance of family values, autistic learning needs, and factors related to gender diversity and sexual orientation. These are aspects of traditional sexual and reproductive health education that are often ignored, making them inaccessible to autistic youth.
This will also be one of only a few studies to examine the benefits of a parent-led intervention for sexual and reproductive health education and the first study to compare two sexual health curricula in a randomized control trial.
The knowledge gained from this study will inform improvements to the program and the development of a manual, which will give the program a greater reach. The results of this study will provide information about how best to provide information and education for parents to help them approach sexual and reproductive health education with their autistic children.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
Teen Wins Award For A Coding Program
In 2020, Sreenidi Bala, a teenager from Farmington, Connecticut, started a passion project that would change the lives of hundreds of autistic students.
RUN Athletes Offer Summer Training Tips
With summer heat waves upon us and fall marathons on the horizon, RUN FOR AUTISM’s Bank of America Chicago Marathon and TCS New York…
New Job Seeker Content on the Hire Autism Website
Hire Autism recently published two new employment-related articles on its website. These articles aim to provide much-needed answers to job seekers’ frequently asked questions.
