About the Team
Back to About the ProjectThis project was a collaboration between autistic adults, autistic caregivers, non-autistic caregivers, and autism researchers. Below, we describe who participated in the project, and how we worked together.
How did we collaborate?
Writing the Proposal
The project proposal was conceptualized and written by the project leads: Dr. Morénike Giwa Onaiwu, Jordan Lee, and Dr. Megan Roberts.
Research Fundamentals Tool
This tool was created in collaboration of the project leads, project coordinators, and the community advisory board. First, we had a discussion about topics that would be important for community members to understand. Then, the advisory board reviewed materials from PCORI’s Research Fundamentals Training so we could make decisions about things such as the depth of content and formatting. Next, the project leads and project coordinators drafted materials for the advisory board to review. We underwent an iterative process of reviewing and incorporating feedback until the tool was finalized by group consensus. Advisory board members could also sign up for optional, additional tasks. For example, advisory board members recorded the narration of our video modules, designed the presentations for the modules, created the “self-check” quizzes, and helped to conceptualize and write the supplementary materials.
Guiding Principles and Research Priorities
The content of this tool was led by the advisory board and our additional community partners, with a project lead and project coordinators formatting the tool. Advisory board members provided their ideas for future directions for research using open-ended reflection questions and the “PICOTS” Research Questions framework. These ideas were also discussed in group meetings. The project team then combined these ideas and organized them into a list. The advisory board and our additional community partners reviewed this list and provided additional ideas and clarifications. This iterative process was repeated until our list was finalized. We decided to add “supporting evidence” to validate the need for these research priorities, because many ideas on the list are new concepts that have not been researched a lot in the past. The project coordinators and one of the project leads reviewed the research literature and wrote the supportive evidence paragraphs, and all community partners were invited to review and contribute to this process as well.
Engagement Strategies for Researchers
This tool was written in collaboration of our project lead and researcher partners. Our advisory board was also involved in writing a letter introducing this tool. For this section, advisory board members suggested ideas they would want researchers to know about, the project team drafted a letter, and it was revised through iterative review until finalized via advisory board consensus.
For the rest of the tool, the project leads developed a list of topics they believed would be important to include in the tool. This list was discussed with our researcher partners and additional ideas were adding accordingly. The tool was written and reviewed by the project leads and researchers partners.
Who is on the team?
Community Advisory Board
Gyasi Burks Abbot: Autism self-advocate, disability fellowship program faculty, author
Sam Brandsen, PhD: Autistic parent to an autistic child, Autism Researcher
Rebecca Logan: Autistic parent to an autistic child
Melanie Lopez: Parent to an autistic child, Special Educator
Jasmyn Mahone: Parent to an autistic child
Jenna Meehan: Autistic parent of autistic children, advocate, Occupational Therapist
Margarita Papalitsas: Parent to an autistic child
Kayla Rodriguez: Autistic adult, advocate
Megan Tam: Neurodivergent parent to an autistic child
Deonna Wardlow: Parent to an autistic child
Samar Waqar: Neurodivergent parent to neurodivergent kids
Project Leads
Jordan Lee, MS CCC-SLP: Family member of an autistic adult, speech-language pathologist, researcher/doctoral candidate
Megan Y Roberts, PhD CCC-SLP: Family member of an autistic child, speech-language pathologist, researcher
Morénike Giwa Onaiwu: Autistic parent to autistic children, advocate, researcher
Additional Community Partners (Research Priorities and Guiding Principles Tool)
Yesenia Boye: Parent of an autistic child
Eva Richardson Malone: Parent of an autistic child, Speech-Language Pathologist
Lucia Laurenti: Parent of an autistic child
Anonymous: Autistic adult, Speech-Language Pathologist
Anonymous: Autistic adult
Anonymous: Autistic adult, parent of autistic children
Researcher Partners (Engagement Strategies Tool)
Dr. Kristen Bottema-Beutel
Dr. Sam Brandsen
Dr. Jenny Mai Phan
Murielle Standley