By Teal Benevides, Ph.D., M.S., O.T.R./L
Associate Professor, Department of Occupational Therapy
By Paige Bussanich, M.S.
Senior Program Manager, Children and Youth with Special Health Care Needs
By Stephen Shore, Ed.D
Assistant Professor of Education, Adelphi University
Little research has been done to make autistic adult health better in the United States. Although a lot of research focuses on children on the autism spectrum, we know that priorities for children are not the same as those for adults.
Which is why we are excited about spreading lessons learned through the Autistic Adults and other Stakeholders Engaged Together (AASET) project – lessons that are guiding us to prioritize the meaningful inclusion of those on the autism spectrum when establishing areas for research.
First, some background: AASET is a partner of AMCHP's State Public Health Autism Resource Center (SPHARC) – a comprehensive, web-based resource center that provides technical assistance and facilitates cross-state learning to increase the capacity of states, particularly Title V programs, to develop and implement systems of care for children and youth with autism spectrum disorders and other developmental disabilities (ASD/DD). SPHARC promotes the spread of evidence-based or informed strategies, promising practices, and policies identified through the work of the state autism grantees and other state programs.
One of these promising practices is engaging self-advocates and their families at all levels of decision-making. In 2019, SPHARC is excited to continue to partner closely with the AASET project. Read below to learn how the AASET initiative carried out this engagement through two years of grant funding and how they are continuing to prioritize the meaningful inclusion of those on the autism spectrum post-grant.
The main goal of the AASET project was to engage autistic adults to find out what research topics were most important to them for future studies. We did this in several ways:
- We first invited autistic community members across the United States and from other countries to join our community council.
- Next, our project team and community council worked together to find out the most important health priorities for autistic adults. Everyone in our project team and community council had an equal chance to share their ideas and say whether they agreed or disagreed with the project activities or documents being shared.
- We learned about priorities by inviting people to talk about those priorities at large meetings, using an online survey, and meeting with small focus groups to see what they thought was most important.
This project engaged autistic adults as partners in finding out their most important priorities. We learned a lot from working in partnership with the autistic adult community to conduct research, so that others could learn from our mistakes and our successes. We hope this project can help other research teams focus on what is most important to the autism community, and that funders will support efforts that the autism community feels are important.
To help make that happen, our project team and community council wrote an Engagement and Compensation Guide and shared it with researchers, autism organizations, and others to help partnerships grow. The guide covers several main topics that are important to consider when working in partnership with the autism community:
- "Presumption of Competence," which means that researchers, academic institutions, and others don't make assumptions about intelligence or comprehension when working with autistic adults.
- "Compensation," which provides guidelines for making sure autistic adults are paid and recognized fairly for their contributions during a research project.
- "Communication," which gives researchers and others suggestions for making sure communication is clear and effective.
- "Measuring Engagement," which gives researchers and others suggestions to check if they are effectively including the autism community in research.
Working together during the two-year project taught us that developing trust is very important. In order to develop trust, researchers must spend enough time making sure things are done right. Sometimes we had to change the project timeline and methods to be more responsive to the community. This made our project better.
The top three areas that the autistic adult community suggested for improving health were related to mental health, gender and health, and access to health care. We made a Top Health Research Priorities list after conducting two years of meetings, an online survey, and focus groups, providing specific research questions that the community desires. We plan to share this back with the autism community to check if the list is complete, because good relationships require follow-through.