Working Together

Glossary

Disclosure: Other ways to communicate

• Augmentative and Alternative Communication (AAC)
  Beukelman, D. R., & Mirenda, P. (2013). Augmentative & alternative communication: Supporting children and adults with complex communication needs. Brookes Publishing Co.
  Schlosser, R.W., & Koul, R. (2023) Advances in augmentative and alternative communication research for individuals with Autism spectrum disorder: moving research and practice forward, Augmentative and Alternative Communication, 39:1, 2-6, DOI: 10.1080/07434618.2023.2181214
• Co-creations using arts, movements and interactions
  Wilson, C., Brereton, M., Ploderer, B., & Sitbon, L. (2019) Co-design beyond words: ’Moments of interaction’ with minimally-verbal children on the autism spectrum. In Cox, A & Kostakos, V (Eds.) CHI 2019 - Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, United States of America, pp. 1-15. https://eprints.qut.edu.au/130556/1/Wilson%20et%20al.%202019%20CoDesign%20Beyond%20Words.pdf
• Visual Methods and Photovoice
  Prosser, J., & Loxley, A. (2008). Introducing visual methods. ESRC National Centre for Research Methods Review Paper. https://eprints.ncrm.ac.uk/id/eprint/420/1/MethodsReviewPaperNCRM-010.pdf
  Gerlach, J. (2024) Connection Across a Lens: Expression Through Photography. Psychology Today. https://www.psychologytoday.com/ca/blog/beyond-mental-health/202403/connection-across-a-lens-expression-through-photography
  Catalani, C., & Minkler, M. (2010). Photovoice: a review of the literature in health and public health. Health education & behavior : the official publication of the Society for Public Health Education, 37(3), 424–451. https://doi.org/10.1177/1090198109342084
  https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=51c1e96e62d82f1aa0174d5d1da4d00eef7d0d21
  Do, P.L., Frawley, P., Goldingay, S., O’Shea, A. (2021). The Use of Photovoice in Research With People on the Autism Spectrum: A Meta-Synthesis of the Literature. Research in Autism Spectrum Disorders. 87, 101828, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2021.1018. https://www.sciencedirect.com/science/article/abs/pii/S1750946721001033?via%3Dihub

Module 1

Lesson 1: Guiding principles

Compensation

• Children and Youth with Special Health Care Needs National Research Network: A Standard Compensation Guideline for Youth, Family, and Patient Partners.
• UVM Autism Collaborative: Autism Research Partner Compensation Guideline

Lesson 2: Language considerations

Ways to talk about autism

• UVM Autism Collaborative visual: Ways to talk about autism
• Wooldridge S. (2023) Writing respectfully: person-first and identity-first language. National Institute of Health.
• Dwyer P. (2022) Stigma, Incommensurability, or Both? Pathology-First, Person-First, and Identity-First Language and the Challenges of Discourse in Divided Autism Communities. Journal of Developmental & Behavioral Pediatrics. 43(2), 111-113. doi: 10.1097/DBP.0000000000001054. PMID: 34984993. https://journals.lww.com/jrnldbp/fulltext/2022/03000/stigma,_incommensurability,_or_both_.7.aspx
• Bottema-Beutel, K., Kapp, S.K., Lester J.N., Sasson, N.J., & Hand, B.N. (2021), “Avoiding Ableist Language: Suggestions for Autism Researchers,” Autism in Adulthood, 3(1)
• CommunicationFIRST, The Words We Use. https://communicationfirst.org/the-words-we-use/

Gender identity

1. Warrier V, Greenberg DM, Weir E, et al. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun. 2020;11(1):3959.

• The Human Rights Center: https://www.hrc.org/resources/sexual-orientation-and-gender-identity-terminology-and-definitions
• Pride Center Vermont: Education resources
• The Trevor Project: Understanding gender identity
• LGBTQ+ Glossary from PFLAG: https://pflag.org/glossary/

Lesson 3. Knowing About Ableism

Internalized ableism

• All Brains Belong VT. Brain Club educational series:
  • Internalized Ableism & Identity (May 7, 2024): https://www.orcamedia.net/show/brain-club-internalized-ableism-and-identity-572024
  • Shame and Internalized Ableism (November 8, 2022): https://www.orcamedia.net/show/brain-club-shame-internalized-ableism-1182022

Systemic ableism

• Green Mountain Disabilities Stories. Monthly podcast of the UVM Center on Disability & Community Inclusion (CDCI)
  • Episode 11: on ableism in medical training: https://cdci.w3.uvm.edu/blog/cdciresources/2023/01/31/cdci-connects-on-ableism-in-medical-training/

Lesson 4. Respecting each other

Meeting norms

• UVM Autism Collaborative meeting slides
• UVM Community Advisory Board Meeting roles

Module 2

Lesson 1: About autism

• All Brains Belong VT co-occurring conditions resource: Everything is connected to everything
• Autism Self-Advocacy Network (ASAN) Welcome to the Autistic Community

Lesson 2: Communication

Influence

• ASHA position statement on Facilitated Communication and Rapid Prompting Method https://www.asha.org/policy/ps2018-00352/
• ASAN’s response to ASHA’s position statement https://autisticadvocacy.org/2018/08/asan-response-to-asha-position-statements/
• Schlosser, R.W., Prabhu, A. (2024) Interrogating Neurotypical Bias in Facilitated Communication, Rapid Prompting Method, and Spelling 2 Communicate Through a Humanistic Lens. Current Developmental Disorders Reports. 11, 41–51. https://doi.org/10.1007/s40474-024-00296-w
  https://link.springer.com/article/10.1007/s40474-024-00296-w
• Heyworth, M., Chan, T., Lawson, W. (2022). Perspective: Presuming Autistic Communication Competence and Reframing Facilitated Communication. Frontiers in Psychology. Mars 10;13:864991. doi: 10.3389/fpsyg.2022.864991. PMID: 35360599; PMCID: PMC8960292. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960292/
• United Nations Convention on the Rights of Persons with Disabilities

Videos of autistic experiences

• Michael’s autism experience (12:46)
• Zeph’s experience of being autistic (12:17)
• Eden’s experience as an autistic person (14:45)
• Matthew’s experience as a person on the autism spectrum (7:00)
• Nicole’s experience of autism (6:13)

Module 3

Lesson 1: Accessibility

The American with Disability Act

• https://www.ada.gov/

Universal design

• Center for Excellence in Universal Design: 7 principles
• Universal Design for Learning (UDL) Guidelines

Identify needs and preferences

• UVM Autism Collaborative onboarding survey template (PDF)
• UVM Autism Collaborative onboarding survey template (RedCap)

Accessible collaboration

• UVM Center for Disability and Community Inclusion Accessibility Resources
• Academic Autism Spectrum Partnership in Research (AASPIRE): Practice-Based Guidelines for the Inclusion of Autistic Adults in Research as Co-Researchers and Study Participants
• Nicolaidis C, Raymaker DM, McDonald KE, et al. Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations. Autism Adulthood. 2020;2(1):61-76. doi:10.1089/aut.2019.0074 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7188318/
• Autism Intervention Research Network on Physical Health (AIR-P): Resource for Researchers

Lesson 2: Materials

Plain language

• https://www.plainlanguage.gov/training/
• https://readable.com/

Lesson 3: Meetings

Accessible meetings

• Autism Self-Advocacy Network (ASAN): Plain language Inclusive Meetings guideline

Lesson 4: Flexibility

Hiring support

• Remote I-9 process: https://www.uscis.gov/i-9-central/form-i-9-related-news/new-form-i-9-now-includes-alternative-procedure-for-e-verify-employers-to-remotely-examine-employee

Employment support

• Department of Labor: https://www.dol.gov/agencies/whd/fact-sheets/21-flsa-recordkeeping
• Social Security Administration: Working While Disabled. How We Can Help.

Module 4

Lesson 1: Responsibility for connection

Dual empathy problem

• Milton, D. E. M. (2012) ‘On the ontological status of autism: the ‘double empathy problem’’, Disability & Society, 27(6), pp. 883–887. doi: 10.1080/09687599.2012.710008.
  https://www.researchgate.net/publication/254245139_On_the_ontological_status_of_autism_The_'double_empathy_problem'
• Who Lacks Reciprocity? Challenging Precarious Assumptions about Autistic People. Dr.Morton Ann Gernsbacher speech at NJ Autism Center of Excellence in Sept 2021

Lesson 2: Clear expectations

CPAR research team development

• PCORI: Building Effective Multi-Stakeholder Research Teams
• Society of Clinical Research Associates (SOCRA): Team science principles
• PCORI: Leading and Contributing to Team Decisions
• PCORI: Valuing All Voices Checklist

Lesson 3: Self-care strategies

Advocacy tools

• Penn State College of Medicine's Faculty Guidelines for responding to inappropriate comments
• GMSA self-advocacy training