Upcoming Research Opportunity: Severe/Profound Autism Services and Family Systems

Opening the Door to New Research Participation

Over the past year, my work has focused on understanding how families of individuals with severe autism navigate service systems across healthcare, education-adjacent supports, respite care, and community programs.

Through surveys, interviews, and policy analysis, one pattern has become clear: many of the challenges families experience are not isolated incidents but structural gaps within service systems themselves.

Because of this work, I have applied for a summer research grant that would allow me to expand this research and deepen the analysis of how service readiness affects families across Florida and beyond.

While the proposal is currently under review, preparing for the possibility of this research opportunity also means beginning to build the community participation that makes meaningful research possible.

What This Research Will Explore

The upcoming study is designed to examine how families experience support systems across the lifespan, particularly where severe autism intersects with healthcare access, workforce training, crisis prevention, and long-term family stability.

The goal is not simply to document challenges, but to identify patterns that can inform policy conversations and improve system readiness.

Why Participation Matters

Research that influences policy must be grounded in real experiences.

Families, caregivers, and professionals often see patterns long before institutions recognize them. When those experiences are gathered systematically and analyzed carefully, they can help illuminate structural barriers and guide more informed decision-making.

Participation helps ensure that the voices shaping research—and ultimately policy discussions—reflect the lived realities of the communities most affected.

Who May Be Eligible to Participate

Participation may be open to:

• caregivers of individuals with severe or high-support autism

• autistic adults with experience navigating service systems

• professionals working within disability-related services

• families across early childhood, school-age, transition, and adult systems

Participation would typically involve surveys or interviews focused on experiences with service access, workforce readiness, and system coordination.

Looking Ahead

If the grant is awarded, participation opportunities and research updates will be shared here on the site.

This post shares information about a potential research project currently under review for a summer research grant. Participation opportunities may be offered if funding is awarded. Any future participation would be voluntary, and additional information about the study, consent procedures, and privacy protections would be provided before data collection begins.

Expressions of interest or questions about the research do not constitute enrollment in a study.

For inquiries or to receive updates, please contact: anthro4advocacy@gmail.com