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Services Across the Lifespan for Individuals on the Autism Spectrum
“Research”

We are an international team of neurodiverse and neurotypical individuals with clinical and/or lived experience of autism. There are many sub-teams within the broader research team. These groups work on various aspects of the study and use an interdisciplinary approach to decision-making and collaboration.

The Investigators are a group of neurodiverse researchers with clinical and/or lived experience of autism.

Principal Investigators

Engagement Core

  • Teal Benevides, Augusta University
  • Stephen Shore, Adelphi University

Assessment Core

  • Rose Nevill, University of Virginia

Data Coordination Core

  • Heather McDaniel, University of South Carolina

Other Co-Investigators

  • Hannah Morton, University of North Carolina at Chapel Hill
  • Valerie Gaus
  • Susan Gaylord, University of North Carolina at Chapel Hill

The UNC and UVA University Research Teams include students, postdoctoral fellows, psychologists, clinical research coordinators and research assistants from all of the recruitment sites. They are responsible for screening and recruiting participants, collecting and managing data, and ensuring the study visits are conducted according to the study procedures.

University of North Carolina at Chapel Hill

  • Elena Lamarche, Lab Manager
  • Sienna Halterman, Project Coordinator
  • Alexis Brewe, Post-Doctoral Fellow
  • Julia Heinly, Research Assistant

UNC Alumni

  • Jen Headley
  • Shannon LaPoint
  • Brenna Maddox
  • Doah Shin

 

University of Virginia

  • Audrey Higgins, Project Coordinator
  • Kat Estrada, Assessor
  • Genevieve Bohac, Assessor
  • Keith Page, Data Coordinator

 

UVA Alumni

  • Emily Furhmann
  • Leah Richardson

The AASET Community Council is an advisory group of community research partners. The Community Council includes neurodiverse people and care partners of neurodiverse people contributing personal and professional expertise to the project. The AASET Community Council meets at least four times a year or more (as needed) to contribute to major study decisions affecting study participants.

  • May-Lynn Andresen
  • Reid Caplan
  • Barb Cook
  • Dena Gassner
  • Amy Gravino
  • Becca Lory Hector
  • Liane Holliday-Willey
  • Eli Kirshenbaum
  • Lisa Morgan
  • Lindsey Nebeker
  • Bill Peters
  • Brigid Rankowski
  • Karl Wittig

The Multi-Stakeholder Advisory Board (MSAB) is an advisory group of community, academic, and organizational research partners. The MSAB includes neurotypical and neurodiverse people with a variety of backgrounds including lived experience of autism, clinical training in mental health care, research, insurance/payer, suicide prevention, and/or public health service delivery. The MSAB meets twice a year to advise the project team.

  • Mary Baker-Ericzen
  • Greg Bannett
  • Karen Luken
  • Pat Schissel
  • Sharon daVanport
  • Gabrielle Chiaramonte
  • Michelle Garnett
  • Ian Young
  • Vanessa Bal
  • Alexis Hernandez-Hons
  • Jolona Kinlaw
  • Johnathan Weiss
  • Jill Forcina
  • Debbie Vermillion

The Clinician Training Team is a group of neurodiverse researchers who co-developed the materials for training clinicians. This team collaborated with other project members to refine the content of the training program, including the evaluation process, and deliver the training program for clinicians across the participating health systems.

University Partners

  • Brenna Maddox
  • Shannon LaPoint

Expert Clinical Partners

  • Susan Gaylord
  • Valerie Guas

AASET Partners

  • Barb Cook
  • Liane Holliday-Willey
  • Lindsey Nebeker

The Recruitment and Engagement Team is a key decision making group. This team’s goal is to develop and implement effective recruitment and engagement strategies throughout the study period.

  • Genny Bohac
  • Becca Lory Hector
  • Lisa Morgan
  • Lindsey Nebeker
  • Bill Peters
  • Brigid Rankowski

The Implementation Outcome Assessor Team is a group of neurodiverse researchers. This team’s goal is to evaluate participants’ perceptions of the study treatment and outcomes through qualitative approaches. This team collaborated with other project members to develop an interview guide and will interview autistic participants who complete the study.

University Research Partners

  • Alexis Brewe
  • Hannah Morton
  • Sienna Halterman

AASET Partners

  • Reid Caplan
  • Becca Lory-Hector
  • Lisa Morgan
  • Lauren Carter
  • Lisa Guy
  • Anna Hebb
  • Austin Holder
  • Kristen King
  • Nina Leezenbaum
  • Kim Lemite
  • Dave Lewis
  • Daniel Liles
  • Shana Little
  • Lisa Locke-Downer
  • Lisa Marshall
  • Heather McCarter
  • Trey McCuen
  • Melissa Moore
  • Erin Musson
  • Rebecca Plesko-DuBois
  • Ronnie Ransome
  • Corey Shaw

The Data Safety Monitoring Board (DSMB) is an independent group of four members that oversees participant safety, study performance, and data quality. The DSMB includes a patient representative (i.e., an autistic adult or a family member of an autistic adult) and members without financial, scientific, or other conflicts of interest with the study. The DSMB meets twice a year to review study progress and provide guidance to the research team.

  • Lily Brown, University of Pennsylvania
  • Ted Brodkin, University of Pennsylvania
  • Robert Naseef
  • Vincent Staggs

Circular diagram titled ‘Development and decision making cycle’ showing three segments: one responsible team develops content, another responsible team finalizes content, and the community council provides input and makes key decisions when requested. A side box lists responsible teams, including recruitment and engagement, study staff training, clinician training, and implementation outcome assessment. A note below states that the Multi-Stakeholder Advisory Board provides recommendations based on reported accomplishments and challenges.