Project update: Tips for Service Providers

The 60 people we interviewed as part of the Neurodiversity Matters project shared many important insights about how service providers can best support neurodiverse/neurodivergent people. We created a list of tips for service providers based on our interview data.

neurodiversity_matters_tips_for_providers.docx

Neurodiversity matters: An ethnographic investigation into discourse, practice, and identity is community-engaged, collaborative research study about the way people are using the language and ideas of “neurodiversity”. We want to know more about how people with different identities and experiences understand and use the term “neurodiversity”, whether this understanding makes them do things differently, and how they think other people, texts, and organizations are using “neurodiversity”.

While the term “neurodiversity” emerged from autism activism and critical disability scholarship over twenty years ago, more people, books, websites, and blogs, have been using the term, often in different ways. “Neurodiversity” is often used to challenge mainstream beliefs about people who have been diagnosed or labelled, but as more people use the term, a wider range of meanings and practices may be associated with it.

In this project we are learning from people who have lived and professional experiences with neurodiversity language and ideas. We ask questions about how these ideas influence people’s identity or practices, and what opinions and experiences they associate with “neurodiversity”. In addition to doing interviews, we are also observing selected public events (such as conferences and rallies) and examining texts (including articles, books, websites, and social media) to see how these terms and ideas are being used.

This research starts from a critical disability studies perspective that seeks to challenge ableism and values the voices of people with lived experiences of disability and labelling. This project helps us understand a range of different perspectives and beliefs that surround neurodiversity, and explore alternative ways of responding to differences between people.

We conducted interviews with people from three different groups:

i) people who identify as neurodiverse, neurodivergent, neuroqueer, neuro-atypical, autistic, or another related term;

ii) people who are professionals and service providers who draw upon ideas of “neurodiversity” in their work in autism or other disability-connected fields;

ii) family members of people who identify with or are labelled as neurodiverse, neurodivergent, or autistic.

We are also doing a discourse analysis of social media, academic articles, and organizational documents. 

Reports, updates, and publications from this project will be put on this website, including plain-language summaries. Please contact margaret.gibson@uwaterloo.ca if you have questions about the project. 

UPDATE: We are no longer recruiting interview participants. We have completed our interviews with 60 people who generously shared their understandings, thoughts, feelings, hopes, fears, and recommendations for change related to neurodiversity.

Thank you to all who supported the project by participating in interviews and/or forwarding the calls for participants. It has been wonderful to have such strong community interest in this work, and we can't wait to share the findings with you all -- and generate ideas for policy, research, and practice.

Stay tuned for updates under the "Updates" tab. Please contact margaret.gibson@uwaterloo.ca if you have other questions.

Researchers and collaborators:

The research team includes people who have a range of identities and experiences related to neurodiversity, including people who identify as service providers, as Autistic/ neurodivergent/ neurodiverse community members and activists, as policy experts, as family members, as educators, and as researchers -- with many of us falling in more than one group. Not all of the research collaborators want to be publicly identified on the website.

Institutionally, this study is a collaboration between researchers at the University of Waterloo. Brandon University, the University of Guelph, and the University of Toronto. The University of Waterloo is where the data are stored and managed, and where the funds are administered.

Principal Investigator:

Margaret F. Gibson, MSW, PhD, Associate Professor, Social Development Studies and the School of Social Work, Renison University College at the University of Waterloo, margaret.gibson@uwaterloo.ca

Co-Investigators:

Patricia Douglas, Assistant Professor, Faculty of Education, Brandon University.

Julia Gruson-Wood, Post-Doctoral Fellow, Family Relations and Applied Nutrition, University of Guelph.

Izumi Sakamoto, Associate Professor, Faculty of Social Work, University of Toronto.