Minimally Verbal/Non-Speaking Individuals With Autism: Research Directions for Interventions to Promote Language and Communication

• Read a summary of this workshop.
• View recordings of the workshop on the NIH videocast website:
  • Day 1 (January 24, 2023)
  • Day 2 (January 25, 2023)

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On January 24-25, 2023, the National Institute on Deafness and Other Communication Disorders (NIDCD) is sponsoring a virtual webinar on research directions for interventions to promote language and communication in individuals with autism who are minimally verbal/non-speaking. The two-day webinar is open to all to view online. Live captioning will be available.

• What: Minimally Verbal/Non-Speaking Individuals With Autism: Research Directions for Interventions to Promote Language and Communication.
• Who: Chaired by Judith Cooper, NIDCD Deputy Director; Connie Kasari, UCLA; Helen Tager-Flusberg, Boston University.
• When: January 24-25, 2023, 1:00-5:00 p.m. Eastern.
• Where:  Viewers may join via the NIH videocast website. For questions or reasonable accommodation requests, contact Tanji Johnson.
  • January 24: videocast
  • January 25: videocast
• Webinar reading list: In preparation for the webinar, see participant-suggested publications.

 

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Agenda

January 24, 2023, 1:00 - 5:00 p.m. Eastern

Watch on the NIH videocast website.

Introduction and purpose
Judith Cooper, Deputy Director, NIDCD

Introductory roundtable: Challenges and opportunities
What single research question on intervention to improve language outcomes for minimally verbal/non-speaking individuals with autism would you like to see addressed/answered?

Panel of stakeholder perspectives

• Grant Blasko (self-advocate, college student)
• Matthew Belmonte (sibling, researcher)
• Eliane Lazar-Wesley (parent)
• John Robison (self-advocate, visiting scholar)
• Jasmine Urquhart Gillis (speech-language pathologist, certified behavior analyst)
• Zachary Williams (self-advocate, M.D./Ph.D. student)
• Jennifer Kent-Walsh (speech-language pathologist, clinical researcher)
• Stephen Shore (self-advocate, special education professor)

Overview of research: How far have we come since the workshop held in 2010?
Helen Tager-Flusberg (co-chair)

Session 1: Novel intervention approaches for minimally verbal/non-speaking individuals

Overview of interventions: Learning from our past to build the future
Connie Kasari (co-chair)

1. Intervention approaches: Children and adolescents with autism
   1. Janice Light: Augmentative and alternative communication (AAC) intervention to build communication, language, and literacy skills with children on the autism spectrum
   2. Karen Chenausky: Speech therapy for minimally verbal autistic children: Where are we?
   3. Kathy Thiemann-Bourque: Peer-mediated interventions for children with autism: Novel AAC approaches that work in natural environments
   4. David McNaughton: AAC intervention to enhance communication and participation in community settings for adolescents and adults on the autism spectrum
2. Intervention approaches: Learning from extensions to adults with acquired AAC needs
   1. Melanie Fried-Oken: Brain-computer interface: A new intervention for the access needs of adults who experience severe speech and motor challenges
   2. Sarah Wallace: AAC strategies for adults with aphasia
3. Clinical/stakeholder commentary: Child and adult interventions
   • Denise Lombardi and son RJ (parent and independent typer)
   • Howard Shane (speech-language pathologist, researcher)
   • Alison Singer (parent, president of the Autism Science Foundation)
4. Open discussion

 

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January 25, 2023, 1:00 - 5:00 p.m. Eastern

Watch on the NIH videocast website.

Session 2: Research designs/methods for intervention studies

Overview: The future: Combined treatments
Larry Scahill: Overview

1. Speakers
   1. Daniel Almirall: Multilevel adaptive interventions: Optimizing how we tailor intervention to the unique and changing needs of each individual and their environment
   2. J. Birdie Ganz: Rigorous reporting in single-case experiments on AAC interventions for minimally verbal/non-speaking people with autism
2. Commentary
   1. Stephen Camarata (speech-language pathologist, researcher)
   2. Amy Lutz (parent, social scientist)
3. Open discussion

Session 3: Meaningful outcome measures

Overview: Research perspectives on developing meaningful outcome measures
Cathy Lord

1. Speakers
   1. Vanessa H. Bal: Emotional health and well-being as an outcome and indicator of intervention success
   2. Frederick Shic: Eye-tracking outcome measures for minimally verbal populations
   3. Nancy Brady: Measuring short- and long-term communication outcomes
2. Commentary
   • Leonard Abbeduto (researcher)

Session 4: Reflections on the workshop for nonspeaking individuals—research opportunities and possibilities

Vikram Jaswal (researcher) with Grant Blasko, Jordyn Zimmerman

Session 5: Summary of research opportunities and possible next steps

Discussion
Led by Connie Kasari and Helen Tager-Flusberg

 

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Speakers and Discussants

Leonard Abbeduto
University of California, Davis

Daniel Almirall
University of Michigan

Vanessa H. Bal
Rutgers University

Matthew Belmonte
The Com DEALL Trust

Grant Blasko
CommunicationFIRST Advisory Council

Nancy Brady
University of Kansas

Stephen Camarata
Vanderbilt University School of Medicine

Karen Chenausky
MGH Institute of Health Professions

Melanie Fried-Oken
Oregon Health & Science University

J. Birdie Ganz
Texas A&M University

Jasmine Urquhart Gillis
S and L Therapy

Vikram Jaswal
University of Virginia

Connie Kasari (co-chair)
UCLA

Jennifer Kent-Walsh
University of Central Florida

Eliane Lazar-Wesley
NIDCD/NIH

Janice Light
Pennsylvania State University

Denise Lombardi and RJ
Parent; typer

Cathy Lord
UCLA

Amy Lutz
University of Pennsylvania

David McNaughton
Pennsylvania State University

John Robison
Self-advocate

Lawrence Scahill
Emory University

Howard Shane
Boston Children’s Hospital/Harvard Medical School/MGH Institute of Health Professions

Frederick Shic
University of Washington/Seattle Children’s Research Institute

Stephen Shore
Adelphi University

Alison Singer
Autism Science Foundation

Helen Tager-Flusberg (co-chair)
Boston University

Kathy Thiemann-Bourque
University of Kansas

Sarah E. Wallace
University of Pittsburgh

Zachary Williams
Vanderbilt University School of Medicine/Vanderbilt University Medical Center

Jordyn Zimmerman
The Nora Project & Chair, CommunicationFIRST

Additional Participants

Cathy Binger
University of New Mexico

Amanda Brignell
Monash University, Melbourne, Australia

Charlotte de Stefano
University of Southern California

Aimee Dietz
Georgia State University

Caitlin Hudac
University of South Carolina

Kristy Johnson
Harvard University

Lynn Koegel
Stanford University

Courtney Norbury
University College London

MaryAnn Romski
Georgia State University

Stephanie Shire
University of Oregon

Audrey Thurm
National Institutes of Health

Giocomo Vivanti
Drexel University

Krista Wilkinson
Pennsylvania State University

 

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Participant-Suggested Publications

Kasari and Tager-Flusberg

• Minimally verbal school-aged children with autism spectrum disorder: The neglected end of the spectrum
• Assessing the minimally verbal school-aged child with autism spectrum disorder

Saul and Narbury

• Feasibility of an app-based parent-mediated speech production intervention for minimally verbal autistic children: Development and pilot testing of a new intervention
• Does phonetic repertoire in minimally verbal autistic preschoolers predict the severity of later expressive language impairment?

Ganz

• Meta-analyses of variables related to instruction in augmentative and alternative communication implementation

Bal

• Understanding definitions of minimally verbal across instruments: Evidence for subgroups within minimally verbal children and adolescents with autism spectrum disorder

Singer

• A full semantic toolbox is essential for autism research and practice to thrive
• Language in Autism Research: Accurate and respectful

Chenausky

• The importance of deep speech phenotyping for neurodevelopmental and genetic disorders: A conceptual review

Jaswal

• Eye tracking reveals agency in assisted autistic communication

Vivanti

• Profiles of vocalization change in children with autism receiving early intervention
• Predictors of expressive language change for children with autism spectrum disorder receiving AAC-infused comprehensive intervention

Zimmerman

• This is not about me (film)
• Remarks to the Interagency Autism Coordinating Committee (IACC) - April 2022
  • Video recording of day two of the IACC April 2022 meeting

Blasko

• Thoughts from an autistic AAC user after the April 2022 meeting of the interagency autism coordinating committee
• LISTEN: A short film made by and with nonspeaking autistic people

Thiemann-Bourque

• Incorporating a peer-mediated approach Into speech-generating device intervention: Effects on communication of preschoolers with autism spectrum disorder
• A comprehensive peer network intervention to improve social communication of children with autism spectrum disorders: A randomized trial in kindergarten and first grade

Light

• New and emerging AAC technology supports for children with complex communication needs and their communication partners: State of the science and future research directions
• Designing effective AAC displays for individuals with developmental or acquired disabilities: State of the science and future research directions

McNaughton

• Using AAC video visual scene displays to increase participation and communication within a volunteer activity for adolescents with complex communication needs
• “Two friends spending time together”: The impact of video visual scene displays on peer social interaction for adolescents with autism spectrum disorder
• Systematic review of AAC intervention research for adolescents and adults with autism spectrum disorder

Belmonte

• Oral motor deficits in speech-impaired children with autism

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