Research Preview

In October, OAR’s Board of Directors authorized funding for eight new applied autism research studies in 2019. These new grants, totaling $228,036, bring OAR’s total research funding to over $3.7 million since 2002. This is the fourth of eight previews to be featured in The OARacle this year.

For most adults, including those with autism, sexuality and relationships are among the primary everyday contributors to life satisfaction, health, and well-being. Sexual and reproductive health services promote the ability to have safe, satisfying, non-coercive sexual experiences and to make and implement informed decisions about reproduction.

However, there is very limited research on the sexual and reproductive health of people with autism and their ability to access related services like sexuality education or appropriate healthcare, such as preventative screenings, contraceptive counseling, and prenatal care.

In a one-year OAR-funded study, “Measuring Sexual and Reproductive Health Service Use and Outcomes for Transition-aged Youth with ASD,” Laura Graham Holmes, Ph.D., will address critical research gaps that impede the development and dissemination of targeted sexual and reproductive health services for transition-aged youth with autism. Dr. Holmes is a post-doctoral researcher in the Life Course Outcomes Program at the A.J. Drexel Autism Institute in Philadelphia.

Through input and feedback from transition-aged youth, caregivers, and health services providers, Dr. Holmes and her research team will develop a comprehensive framework of key measurable constructs that can be used to guide future research and policy advocacy. She will also use the framework to develop and pilot an open source sexual and reproductive health instrument designed for population-based research to serve transition-aged youth with autism.

Methodology

Dr. Holmes’ study will be conducted in three phases:

Phase 1: The research team will interview self-advocates, caregivers, and service experts to expand and prioritize a detailed list of measurable constructs related to sexual and reproductive health service needs and salient outcomes. They will also use the interviews to identify individual, family, and contextual factors that may affect sexual/reproductive health service access and outcomes for transition-aged youth with autism. The research team will also get feedback from stakeholders on specific survey question measures based on data from the Institute’s National Autism Data Center that correspond to the list of measurable constructs. Stakeholders will participate in an initial phone interview and two rounds of online surveys.

The research team will recruit 10 to 15 youth and 10 to 15 caregivers of minimally verbal transition-aged youth with autism from different racial/ethnic groups, socioeconomic backgrounds, and gender identities. They will also recruit 10 to 15 health service provision experts from different settings, such as medical professionals, directors of residential or mental healthcare facilities, care coordinators, and public policy specialists. The goal is to ensure that service providers come from different geographic areas and have served women, LGBTQA+ people, and racial and ethnic minorities.

The end result for this phase will be a prioritized set of attributes about sexual/reproductive health, service needs, risk/protective factors, related outcomes, and factors believed to affect access to sexual/reproductive health services. That set of attributes will serve as a comprehensive framework of key constructs to guide future research and policy advocacy.

Phase 2: This phase will focus on developing and pilot-testing a health services instrument designed to collect data on the sexual/reproductive health of transition-aged youth with autism on the population level. Dr. Holmes and her team will pilot the instrument with transition-age youth (18 to 29 years old) with autism, recruiting sets of three participants per wave of interviews until there are no further issues with the instrument. Using a cognitive interviewing technique, interviewers will get feedback on underlying constructs, instructions, items, and response sets. They will also examine participant comprehension of text, retrieval/recall of relevant information, estimation/judgment, and responses to determine if the instrument is valid and accessible.

Based on data from those interviews, they will refine instrument instructions, questions, and response sets, and add accessibility modifications as indicated.

Phase 3: In this phase, the research team plans to use the findings from this smaller study to create a grant proposal for funding for a larger study from the National Institutes of Health. They will also write articles about the study for scientific journals and produce summaries of their findings to make them accessible to advocacy groups and stakeholders.

Outcomes

With this study, Dr. Holmes hopes to address critical gaps in research on sexuality and autism, including:

• Ensuring that the broader population of transition-age youth with autism and their families are represented in research
• Broadening the level of analysis to include systemic factors, like state-level policies and access disparities, in addition to individual and family factors
• Providing a clearer understanding of community needs and preferences in order to focus resources to meet those needs and preferences
• Providing a framework for research on service accessibility and implementation so that programming and services can be made available to those who need them

Sexuality is a fundamental aspect of human life. To fully experience it as a satisfying, important part of life, adults must be able to make informed decisions about their sexuality and reproductive health and have access to services that enable their well-being and good health. This study is one step toward enabling adults with autism to make those informed decisions.