About the Team

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This 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?

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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