Research

Campus Belonging: Exploring Accessible Education in Canadian Post-Secondary Environments

Study Purpose: Accessing and navigating campus life and attaining credentials is difficult for many Autistic people despite their many contributions to post-secondary campuses Through co-design, we will understand and develop targeted supports, enhanced strategies, and practice-based policies to enhance autistic postsecondary students’ sense of belonging within Canadian institutions. Informed by critical autism studies, the neurodiversity movement, and participatory autism research, this multi-year study incorporates a national survey about campus experiences, video walk-through data collection, and digital story development and incorporation into the co-design process.

Team Members:

Heather Brown, University of Alberta (Nominated PI)

Briano Di Rezze, McMaster University (Co-PI)

Sandy Thompson-Hodgetts (Co-PI)

Co-I's: David Nicholas, University of Calgary; Carly McMorris, University of Calgary; Megan Ames, University of Victoria; Michelle Searle, Queen's University; Dana Hayward, University of Alberta; Tara Connolly, Carlton University; Jess Lopez, University of Calgary; Chris Soodeen, University of Winnipeg; Patrick Dwyer, La Trobe University

Funding: SSHRC Insight Grant

Photo by CX Insight on Unsplash

Study Purpose: The aim of this project is to test the effects of a child-focussed goal setting approach on therapy engagement and rehabilitation outcomes for 5-12 year old children with neurodevelopmental conditions. We are also interested in service use and the cost vs. benefits of the ENGAGE approach compared to usual practice. This study could provide evidence to improve meaningful child and family outcomes in paediatric rehabilitation and improve efficiency of paediatric rehabilitation services.

Team Members:

Sandy Thompson-Hodgetts (Co-PI)

Lesley Pritchard (Co-PI)

John Andersen, University of Alberta/Alberta Health Services (Co-I)

Kelly Mrklas, University of Calgary/Alberta Health Services (Co-I)

Rhonda Rosychuk, University of Alberta (Co-I)

Lonnie Zwaigenbaum, University of Alberta (Co-I)

Jennifer Zwicker, University of Calgary (Co-I)

Funding: This research is funded by the Maternal Newborn Child and Youth Strategic Clinical Network, Health Outcomes Improvement Fund.

Study Purpose: Authentic inclusion, including social connectedness and belonging, is important to health, wellbeing and quality of life. However, Autistic students are at high risk of social exclusion. A lack of peers' appreciation of diversity and understanding of the characteristics associated with autism may contribute to exclusion. Diversity-awareness interventions that provide explanatory, strengths-based education about autism have been shown to increase peer engagement and acceptance of autistic peers, and have the potential to promote increased social inclusion. Elementary school classes that include an autistic student will participate in activities centered around diversity-awareness and autism. We developed a three-session intervention that uses storybooks and engaging activities to (1) celebrate the ways they are all students are similar to each other and diverse from one another to broadly build empathy and promote inclusivity within the school environment, and (2) include strengths-based, neurodiversity-affirming information to foster a deeper awareness, understanding of, and empathy towards autistic peers. We will explore the influence of these activities on peer engagement by coding peers interactions with autistic students before and after the intervention. We will explore the influence of these activities on inclusion using questionnaires about inclusion, acceptance, and friendships, and through talking with autistic students, peers, and school staff about how they perceived the intervention influenced inclusion of autistic students.

Team Members:

Sandy Thompson-Hodgetts (Nominated PI)

Heather Brown, University of Alberta (Co-PI)

Shamala Manilall, Edmonton Catholic School Division (Co-I)

Justin DuVal, Edmonton Catholic School Division (Co-I)

Santwana Carstensen-Sinha (Research Assistant)

Funding: Kule/WCHRI

Photo by CDC on Unsplash

Study Purpose: School is a key environment in which children can play, learn, and interact with others. Yet, autistic children often struggle to participate at school and education professionals often feel ill-equipped to support them. A lot of research has looked at inclusion of autistic students. But, almost no research has prioritized children’s perspectives or thoughts on what they would find supportive. We explored autistic students’ experiences with participation at school to understand what they think creates the best environment at school to help them participate. We recruited four grade six Autistic students who attended a mainstream school. We used a variety of creative research methods to help autistic students share their thoughts and experiences, including photovoice, photo-elicitation, write/draw/tell activities, and interviews.

Team Members:

Sandy Thompson-Hodgetts (Nominated PI)

Heather Brown, University of Alberta (Co-I)

Tim Barlott, University of Alberta (Co-I)

Sheija Abraham, University of Alberta (Graduate student)

Funding: Canadian Occupational Therapy Foundation

Photo by Kenny Eliason on Unsplash

Study Purpose: Engaging Autistic people as team members or co-researchers enhances the relevance of research to their wants and needs, decreases health disparities, improves their quality of life, and improves the translation of research into best practice. However, Autistic self-advocates have expressed frustration with their lack of inclusion as partners in research, or feeling that their involvement is tokenistic and that they do not understand research well enough to participate meaningfully when they are invited. Our team of Autistic and non-autistic researchers and Autistic community members developed Research 101, a series of online training modules designed to increase Autistic people’s knowledge of research processes and skills for collaboration, to support the meaningful engagement of Autistic people as active and informed partners in research. We trialed Research 101 with three groups of Autistic people in Canada and the United Kingdom, who provided feedback on the content and format, and ideas for changes and additional materials. This grant enables us to integrate this feedback and finalize the training modules and supplementary materials for widespread, open-access, dissemination. 

Team Members:

Sandy Thompson-Hodgetts (Nominated PI)

Jackie Ryan (Project Lead/Research Associate)

Heather Brown, University of Alberta (Co-I)

Sue Fletcher-Watson, University of Edinburgh (Co-I)

Laura Hull, University of Bristol (Co-I)

Funding: CIHR

Photo by UX Indonesia on Unsplash

Study Purpose: This collective case study looked in-depth at four, different, community based recreation programs in the greater Edmonton area. It included in-depth interview with parents, with community service provider front-line staff, and with community service provider decision-makers. Data included these in-depth interviews as well as detailed analysis of available written materials (registration forms, inclusion policy documents, etc.), and on-site observation (done pre-COVID 19).  

Funding: This research was funded by the Social Sciences and Humanities Research Council of Canada (SSHRC).

Publication forthcoming.

Study Purpose: Autistic children participate in fewer community recreation activities than their non-autistic peers, and may be left out by peers when they do. We observed how peers engage with and include 5-12 year old autistic children n mainstream, community summer camps, and if sharing information about autism, shared interests, and strengths-based strategies to engage an autistic peer changes peer interactions. We included children who did and did not share their autism diagnosis at camp. 

Team Members:

Sandy Thompson-Hodgetts (Primary Investigator)

Mélanie Couture, University of Sherbrooke (Co-Investigator)

Jonathan Weiss, York University (Co-Investigator)

Stephanie Shire, University of Oregon (Co-Investigator)

Lonnie Zwaigenbaum, University of Alberta (Co-Investigator)

Funding: This research is funded by the generosity of the Stollery Children's Hospital Foundation through the Women and Children's Health Research Institute.

1. Thompson-Hodgetts, S., McKillop, A., Couture, M., Shire, S., Weiss, J. & Zwaigenbaum, L. (2023). Influence of a brief autism education intervention on peer engagement and inclusion at mainstream day camps: A mixed-methods pilot study. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-023-06024-4

Study purpose: Specific objectives of this study were to (1) understand what self-determination, which includes autonomy and choice, means to autistic people without co-occurring intellectual disabilities and (2) learn from autistic people how they would like to be supported to be self-determined. This was a complementary study to the participatory research to enhance self-determination for Autistic people with co-occurring intellectual disabilities. 

Team Members:

Sandy Thompson-Hodgetts (Primary Investigator)

Jackie Ryan (Co-investigator)

Heather M. Brown (Co-investigator and Autistic Advisor)

Adam Kedmy (Autistic Advisor and Research Assistant)

Anne Borden King (Autistic Advisor)

Austin Lee (Autistic Advisor)

Christina Devlin (Autistic Advisor)

Emily Coombs (Autistic Advicor and Research Assistant

Adrian Xavier (Research Assistant)

Funding: This research is funded by a Partnership Development Grant from Social Sciences and Humanities Research Council of Canada 

1. Thompson-Hodgetts, S., Ryan, J., Coombs, E., Brown, HM, Xavier, A., Devlin, C., Lee, A., Kedmy, A., & Borden, A. (2023).Towards understanding and enhancing self-determination: A qualitative exploration with Autistic adults without co-occurring intellectual disability. Frontiers in Psychiatry, section Autism (Special issue: Break the Stigma, Autism), Volume 14, https://doi.org/10.3389/fpsyt.2023.1250391

Study Purpose: This study aimed to explore the unique experiences of parenting multiple children with neurodevelopmental disabilities, including how those experiences influence social participation and emotional wellbeing. 

Team Members:

Sandy Thompson-Hodgetts (Primary Investigator, mentor)

Marcela Barahona Ortega (Co-Primary Investigator; Developmental Pediatrics fellow)

MScOT Capstone Students: Claire Anthony, Emily Sharp, Hayley McComish

Funding: This research was funded through a University of Alberta, Faculty of Medicine &

Dentistry, Department of Pediatrics Clinical Fellow Trainee Research Grant provided through

the Women and Children’s Health Research Institute (WCHRI) with funds generously donated

from the Stollery Children’s Hospital Foundation 

1.     Thompson-Hodgetts, S., Barahona Ortega, M., Anthony, C., Sharp, E. & McComish, H. (2024). “It makes me a better person”: The unique experiences of parenting multiple children who experience disability. Under review, Research in Intellectual and Developmental Disabilities. https://doi.org/10.1016/j.ridd.2024.104697

Photo by Peter Dlhy on Unsplash

Study Purpose: There is a need to increase the involvement of autistic individuals in research to enhance the relevance of autism research, to support the self-determination of autistic individuals, and to improve their quality of life. This current study aimed to learn from autistic people about their experiences of PAR by answering the research question “What are the perspectives and experiences of the autistic community of participatory autism research?”

Team Members:

Jackie Ryan (Primary Investigator)

Kabie Brook, University of Edinburgh

Sue Fletcher-Watson, University of Edinburgh

Study Purpose: There are complex challenges and opportunities related to employment for persons with intellectual and developmental disabilities, yet we lack a synthesis of existing vocational services and critical theoretical knowledge about how existing processes foster or impede successful implementation. This study will advance this under-developed area of employer actions, strategies, and supports by addressing the following research questions: (1) what services currently support vocational opportunities for adults with DD in Canada and elsewhere?  (2) What is the evidence of the effectiveness of such interventions? (3) What resource are required by employers to assist adults with DD in vocational stability? and (4) What are the resulting practice, research and policy implications of these findings?

Funding: This study was funded through the Ontario Ministry of Community and Social Services Developmental Services Research Grant. 

Relevant Research Outputs to date:

1. Rashid, M., Thompson-Hodgetts, S., Nicholas, D. (2020). Building employer capacity for persons with developmental disabilities: Tensions and considerations from the perspective of employment support professionals. Research in Developmental Disabilities, online early 

2. Teindl, K., Thompson-Hodgetts, S., Rashid, M., Nicholas, D. (2018). Does visibility of disability influence employment opportunities and outcomes? A thematic analysis of multi-stakeholder perspectives. Journal of Vocational Rehabilitation, 49, 367-377. 

3. Rashid, M., Thompson-Hodgetts, S., Nicholas, D. (2018). Building employers’ capacity to support vocational opportunities for adults with developmental disabilities: A synthesis review of grey literature. Journal on Developmental Disabilities, 23(3), 31-45.  

4. Rashid, M., Hodgetts, S., Nicholas, D. (2017). Building employer capacity to support meaningful employment for persons with developmental disabilities: A grounded theory study of employment support perspectives. Journal of Autism and Developmental Disorders, 47, 3510-3519. DOI 10.1007/s10803-017-3267-1  

5. Rashid, M., Hodgetts, S. & Nicholas, D. (2017). A synthesis review of employer needs and strategies to build employment capacity for persons with developmental disabilities. Review Journal in Autism and Developmental Disabilities, 4, 165-173, DOI: 10.1007/s40489-017-0105-5. 

6. Nicholas, D., Hodgetts, S., Zwaigenbaum, L., Smith, L.E., Shattuck, P., Parr, J.R., Germani, T., Mitchell, W., Sacrey, L. & Stothers, M.E. (2017). Research needs and priorities for transition and employment in ASD: Considerations reflected in a ‘Special Interest Group’ at the International Meeting for Autism Research. Autism Research, 10, 15-24. DOI: 10.1002/aur.1683