See the "Presentations" tab for links to videos, slides, audiofiles, and papers from the project. Please contact margaret.gibson@uwaterloo.ca if you have questions about this research.

Neurodiversity: 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

Overview of Project Findings

The Neurodiversity Matters project explored what different people think about neurodiversity, and how they use ideas about neurodiversity in their writing, practice, identity, and everyday life. There were two main sections of the project.

The first section was a discourse analysis, where we carefully gathered and examined 96 academic publications that talked about "neurodiversity" from across different fields such as psychology, education, social work, and disability studies. We found that neurodiversity is being taken up much later by academic writers than by activists and online writers, but that academic writing about neurodiversity has exploded in the past few years, with a sudden increase in the number of articles and books. The majority of academic writers who talk about neurodiversity connect the term very closely with discussions of autism, although many also acknowledge that it can be used more broadly. The contributions of academic writers don't all agree on a definition or understanding of neurodiversity, but most of them do see it as a challenge to dominant beliefs that certain experiences and people are necessarily "pathological" or should be "cured". Academic texts reviewed for the project generally took a stance of weighing in on the existing debates and discussions that started outside of the academic realm.

The second section of the project was an ethnography. We interviewed 60 people who lived in Southern Ontario and were part of three groups: those who identify with neurodiversity, those who use neurodiversity in their work as service providers, and those who have family members who identify with neurodiversity. The first 25 interviews were done in person, and the rest were done online due to the COVID-19 pandemic. We also observed 7 different online events to see how people used neurodiversity language. We found that neurodiversity travels in limited circles, so that people who are engaged with online and/or activist and/or employment advocacy groups know a lot about it and use it extensively, whereas others are interested but isolated from these conversations. Many people said they had only read about neurodiversity. People said that most service providers need to know more about neurodiversity and that neurodiversity-identified providers are both valuable and scarce. People want to challenge dominant practices and see neurodiversity as an important way to do this; behaviourist approaches were especially troubling to many participants. People have lots of hope and enthusiasm that we can create a more inclusive and supportive society if we listen to the perspectives and knowledge of neurodiversity-identified people in modifying our practices and policies.

Interviews

We are immensely grateful for all the people who have participated in interviews, as well as those who have told other people about the project.

We have completed all of our interviews. We talked with 60 people across three groups:

1. people who identify with neurodiversity, including those who identify as neurodiverse/ neurodivergent/ Autistic/ ADHD/ Mad-identified/ neuroqueer, or don't believe in labels
2. people who work as service providers, including educators and educational assistants, resource support people, social workers, counsellors, and other support professionals
3. family members of people who are neurodivergent, autistic, or otherwise identified with neurodiversity.

Most of the people we have spoken with are part more than one group -- and some are part of all three. All participants live in Southern Ontario. Due to COVID-19, while the first 24 interviews were all completed in-person, the remaining 36 were completed remotely. We have all learned new ways of communicating and connecting -- and doing research!

People have had lots of experiences, thoughts, and feelings to share about neurodiversity, ranging from really difficult experiences of violence, exclusion, and oppression to positive and transformative moments of connection, activism, wholeness, and possibility. This is topic that people say is important, and we are committed to honouring the wisdom and experiences people have shared with us.

We continue to go through the interviews and compile what people told us was important to them about neurodiversity. We will post further links to papers and talks in the presentations section of the website.

Interested in the demographics of our interview participants? See the poster below for more information.

ndm_interview_demographics_poster.pdf

Ethnographic Observation

A total of 5 researchers on the team observed 52 sessions at 7 online events (e.g. conferences, presentations) from 2020-2022 to investigate how the language and ideas of neurodiversity are being used with different speakers, events, and audiences. 

See the "Observing Neurodiversity" presentation slides under the Presentations tab for an overview of our methods and findings.

Discourse Analysis

We also examined 96 published articles, books, and other documents that address neurodiversity for a discourse analysis, mapping who is writing about it, how, and for what audiences and purposes. If you want to understand the way we analyzed sources, see the Research Tools section for our Discourse Analysis questions.

For the list of texts that we analyzed in the discourse analysis, see the attached document with the title Finalized DA Corpus 2022. These were the items that we analyzed for the paper that we are currently revising for publication. We also read and used other sources to help us put this work into context. These sources will appear in the published article. 

See the "Getting Close to Discourse" presentation slides under the Presentations tab for an overview of our methods and findings.

Interested in doing your own research?

We are happy to support other researchers who are interested in neurodiversity! See the Research Tools section for resources that might help you in your work!

Thinking of doing a discourse analysis? You might be interested in the discourse analysis tool the team developed. Feel free to use this for your own research; you can credit b. livingstone and M. F. Gibson (2020) and link to this website.

Thinking of doing interviews? Take a look at our different interview guides for semi-structured interviews with different groups of participants. Feel free to use this in your own research: you can credit M. F. Gibson (2019) and link to this website.

Please contact margaret.gibson@uwaterloo.ca if you want more information about the project.

See the attached files below for other calls for participants with our team. For example, Vicky Ikeno is interviewing people who are 18-30 years old, identify with disability/ as disabled, and live in the Waterloo-Wellington region of Ontario. See more details attached!

Thank you to all who have supported neurodiversity research.

--The Neurodiversity Matters Team