Participating in Autism Research

Ongoing Autism Research – Volunteers Needed

Below is a listing of university affiliated research projects which autistic individuals, parents, and community professionals may be interested in exploring.

Researchers are invited to submit your research project using this online form. Submission may take up to one week to post. Please read your submission carefully, checking for spelling or other errors. ACT does not edit postings.

ACT reserves the right to request ethics approval for projects and not to post projects submitted.


Challenges and Facilitators During Transition to Adulthood of Adolescents with Developmental Disabilities

Posted: September 2021
Project End Date: Ongoing

Researchers from the University of Calgary are conducting a study to learn about the first-hand experiences of Chinese immigrants who have been diagnosed with autism in Canada. The purpose is to better understand the perspectives of the immigrant community in Canada who have undergone a developmental disability diagnosis, as well as using the information to develop strategies and/or provide insight for professionals and clinicians who are considering diagnosing a Chinese individual with autism. This study is conducted entirely online.

To participate in this research project, you must:

  • Be aged 16 years or older, up to 35 years old.
  • Be an immigrant of Chinese descent who is now living in Canada.
  • Have autism, including Asperger syndrome, or are actively in the process of obtaining a formal diagnosis in Canada
  • Be verbally fluent, and understand a sufficient level of English or Mandarin Chinese
  • Be able to provide informed consent.

Participation involves a short online demographic survey (in either English or Chinese), filling out online consent forms and an online (Zoom) interview about your experiences of receiving an autism diagnosis. The interview should take about 1 to 1.5 hours of the participant’s time. All participants will receive a $25 gift card of their choice.

If you would like more information about the study or are interested in participating, please contact Cecilia (Qian Qian) Ye at qqye@ucalgary.ca.


Challenges and Facilitators During Transition to Adulthood of Adolescents with Developmental Disabilities

Posted: July 2021
Project End Date: Ongoing

Researchers at Dalhousie University are conducting a project investigating challenges and resources during transition to adulthood of adolescents with disabilities. The purpose of this project is to uncover barriers and factors that ease the transition to adulthood of adolescents with disabilities from perspectives of youth with disabilities, their parents, and service providers. What we mean by services includes broad spectrum of resources including education, employment, healthcare services, etc. The goal of this study is to have a better understanding of services and resources that are available to support the process of transition to adulthood for young people living with disabilities.

Participation will require involvement in an interview either face to face or over phone or via Skype, whichever is convenient, to share ideas and perspectives. Participants will also be asked to answer some basic questions describing themselves through a confidential online survey platform or filling out paper-based demographic survey. Participation in this study is completely voluntary and participants may choose to stop participating at any time prior to, during, or after the interview. A gift card (e.g., Amazon, based on your choice), valued at $30 will be provided for participant, even if they discontinue participation during the interview process. 

If you choose to participate in this study or have any further questions, please do not hesitate to contact the research team at via email at resasd@dal.ca.


Caregivers Of Individuals With Mental Illness: Qualitative Study about Economic Costs and Strategies of Family Caregiving

Posted: July 2021
Project End Date: December 2021

Researchers at Adler University are looking to learn from caregivers about how they cope with the personal financial impacts of providing care to family members with mental illness.

To be suitable as a participant in this research project:
• You are 19+ years of age.
• You are comfortable reading and speaking in English
• You are living in British Columbia, Canada.
• You are a primary caregiver (or were in the past 2 years) for a family member of any age who was formally diagnosed with any form of mental illness. (A primary caregiver is a person with primary responsibility for the care of an individual who is unable to independently care for themselves. They will be considered even if they did not live in the same home as the family member)
• On a scale of 1 – 10 with 10 being very high distress and 1 being low distress, you are currently not experiencing distress higher than a 6 relating to your experience of caregiving
• You personally have experienced financial changes as part of your family caregiving role. (Such as lost income, savings, extra expenses, lost career chances from time being a caregiver)
• You are willing to speak about your experience and discuss how you managed with financial changes.

This study may take up to 3 hours of your time. This includes an email screening process predicted to take a maximum of 30 minutes. A 90-minute audio recorded semi-structured interview. Participants will have a chance to review their transcript after the interview and make changes to it. The review of the transcript is predicted to take a maximum of 60 minutes. All responses will be private. $10 Starbucks gift card will be awarded to participants. Please contact Esha Chakraborti at echakraborti@adler.edu if interested and for any questions


Survey on Healthcare Access by Autistic Individuals and Caregivers in Canada

Posted: July 2021
Project End Date: December 2021

This is an online survey that explores how speaking English or French in Quebec and other Canadian provinces can affect access to health and social services by individuals on the spectrum (including those with intellectual disability). We are looking for autistic individuals, or their caregivers, to complete this survey. The survey takes approximately 30-50 minutes to complete. A $15 gift card will be provided for completing the survey.

For anyone interested in learning more or participating, please contact poplab.scsd@mcgill.ca with the subject line Healthcare Access Survey.


Autism Intervention Opinions Survey

Posted: July 2021
Project End Date: January 2022

Researchers at UC Davis are interested in learning what autism stakeholders think about autism intervention goals and support practices! Stakeholders could include people on the autism spectrum (formally diagnosed or self-identified) and their family members, as well as professionals, clinicians, and researchers working in the autism field.

The survey should take about 30-60 minutes to complete. It is possible to leave the survey and return to it up to a week later if you use the same browser and computer and accept cookies. Please contact Patrick Dwyer (psdwyer@ucdavis.edu) if you have any questions about this study.

Survey Link: https://ucdavis.co1.qualtrics.com/jfe/form/SV_8227gTZMioA77SZ


Investigating Depressive Symptomatology in Adolescents with ASD and ADHD

Posted: May 2021
Project End Date: Ongoing

Researchers at Queen’s University are conducting a study of the overlapping symptoms between depression and developmental disorders such as ASD and ADHD. Adolescents both with and without depression, and with and without ASD or ADHD, are invited to participate, along with their parent.

The child will be asked to complete a questionnaire about their feelings over the last two weeks. This will take approximately 30 minutes. The parent will also be asked fill out a questionnaire about how they believe their son/daughter has been feeling over the past two weeks and his/her behavior. This should take approximately an hour. If the parents feels that this would be too challenging for their child, their portion can be skipped, with only the parent completing the questionnaire. For their participation, parent and child will each receive a $10 Amazon e-gift card.

Due to COVID-19 restrictions, the study will be taking place over Zoom, a video conferencing program. If you and your child are interested in participating in the study, please reach out to asd.studies@queensu.ca for more information.


Language Preference, Autism Identity, and Mental Health Online Survey

Posted: May 2021
Project End Date: December 2021

Researchers at Simon Fraser University are investigating the relationship between one’s language preferences regarding Autism Spectrum Disorder (ASD), involvement in autism and autistic communities, and mental health and well-being. The survey has three parts, and the time to complete all three parts varies between 45 minutes to 3.5 hours (time of completion varies between people. For example, completion of the first part may take between 15 and 90 minutes depending on your depth of answers). After the completion of each part of the survey, participants can enter a draw to win a $100 Visa gift card (total of 3 entries). Participants can stop at any time, and can return to where they left off if they choose. Who can participate: – Adults who self-identify as autistic / as having autism – Parents, caregivers, partners, friends, and community members of people with autism / autistic people – Professionals, students, and volunteers who work with people with autism / autistic people This study was developed in collaboration with autistic people / people with autism.

If you are interested, please contact Troy Boucher at addl@sfu.ca.


Social inclusion among individuals with autism spectrum disorder: How to advance their resilience

Posted: March 2021
Project End Date: Ongoing

This Dalhousie University study will explore resilience and stress experienced by families of children with autism spectrum disorder (ASD). Researchers are also interested in understanding the strategies families and children use to cope with challenges, as well as available resources and gaps in services to promote family’s resilience. Participants must be: persons living with ASD (above 15 years), a guardian/parent of a person with ASD, or a healthcare service provider of young people living with ASD. Participants will speak with a member of the research team during a 60-minute individual interview either over phone or via Skype, whichever is convenient, to share ideas and perspectives. By participating in this interview, participants will be given a gift card (e.g., Amazon, based on your choice), valued at $30.

If you are interested, contact Dr Ghanouni at resource@dal.ca.


The Quality of Life of Older Adults on the Autism Spectrum

Posted: February 2021
Project End Date: Ongoing

This University of West Alabama study will explore the experiences of older autistic adults (aged 50 years and older). Because of the understanding that there is no universal experience for anyone or any identity, and the lack of awareness about experiences of older adults, the study asks, “What are your social, emotional, mental, and physical quality of life experiences?” There are three parts of the study, a demographics survey, a quality of life assessment developed for those of us that identify as on the autism spectrum, and a quality of life interview with the main research conductor. Interviewees choose the mode of communication for the interview and will be compensated for completion of the study. Benefits also include having your experiences of quality of life shared.

If you are interested in participating in the study, please contact Rachel Colston at colstonr@uwa.edu for more information.


Body Image in Adolescents with and without Autism Spectrum Disorder

Posted: February 2021
Project End Date: Ongoing

Many people with autism experience feeding and eating problems (e.g., picky eating, sensitivity to food textures, eating disorders), but it is not fully understood why. Body image (how someone thinks and feels about their body) plays an important role in eating disorders. This University of Calgary study aims to understand how teenage females with autism experience body image compared to their peers without autism. We will also examine how body image impacts eating and weight-control behaviours (e.g., dieting, exercise) in teens with and without autism.

Teenage girls (aged 12-17) and a parent/guardian will be asked to complete a brief phone screening and fill out online questionnaires about their eating behaviours, thoughts, and feelings about their body. As a thank you for participating, families will be entered into a draw for 1 of 30 $40 gift cards upon completion of the study.

If you are interested in participating in the study, please contact Jessica Baraskewich at enhancelab@ucalgary.ca for more information.


Autistic Adults’ Perspectives on Education and Intervention Services

Posted: January 2021
Project End Date: Ongoing

Often intervention and education for autistic children is designed and implemented without any input from autistic individuals themselves. This is why researchers in the Department of Education at UC Santa Barbara are recruiting autistic adults to participate in a study in which they will be asked to give feedback on different aspects of common intervention programs for autistic children. The study consists of an online survey that will take approximately 20-45 minutes to complete. The survey includes five short video clips of young children participating in intervention and a list of statements about common intervention goals and strategies. Participants will be asked to provide their opinions about these items. The videos might make some participants feel anxious, distressed, or frustrated. If this is the case, participants can choose to stop participating at any point during the study.

Potential participants must be autistic and be at least 18 years old.

If interested, please visit this website.

For questions, please contact graduate student researcher Rachel Schuck at rkschuck@ucsb.edu.


Development of an Artificial Intelligence Chatbot for Families of Children with Neurodevelopmental Disorders

Posted: October 2020
Project End Date: Ongoing

Researchers at the University of Alberta are attempting to improve the life outcomes of families affected by Neurodevelopmental Disorders by developing a chatbot. The verification of engagement strategies used in the Chatbot is critical to improve families’ experiences with the application. The research team is currently in the process of running Focus Groups that are one-time 45~60-minute online sessions with 1-4 other individuals. Parents who have a child with Neurodevelopmental Disorders are invited for these focus groups. They will answer questions about their preferences for specific engagement strategies and converse with other participants in a Zoom meeting format.

For more information, please see the Study Flyer. If you are interested in participating, please contact Mahdieh Yousef at camibot@ualberta.ca.


Psychological Impact of COVID- 19 Pandemic and Experience: An International Survey

Posted: September 2020
Project End Date: Ongoing

You are being invited to take part in a research study exploring the psychological impact of the coronavirus, its effect on our emotions, behaviour and wellbeing. Using a survey conducted by Southern Health NHS Foundation Trust and Portsmouth University and in collaboration with the University of Victoria, the aim is to explore what factors support an individual’s wellbeing and what might have a negative impact in such unprecedented times. Responses will build a picture and enable better understanding about how the current pandemic is affecting people and ensure we identify gaps in response. The information will help planning future support, services and clinical research. It will also help key stakeholders in preparing for future infectious diseases or pandemics.

If you decide to take part in the study, you will be asked to complete a consent form and the online survey questionnaire that will take about 15 minutes to complete. You can access these by clicking here.

For more information, please see If you are interested in participating or would like more information, please contact local investigators Dr. Brianna Turner briannat@uvic.ca or Dr. Theone Paterson tpaterson@uvic.ca.

 


Canadian Parents’/Guardians’ Perspectives about the Impact of COVID-19 School Closures on Students Special Educational Needs

Posted: June 2020
Project End Date: Ongoing

This study is intended for the parent(s) or guardian(s) of children/youth with a special educational needs who are registered in school, and who have been affected by school closures due to COVID-19. Seeking feedback from you about your child’s experience, and your experience as a parent/guardian during school closures due to COVID-19. Specifically, exploring the strategies and supports that are effectively meeting students’ and parents’/guardians’ needs, and the strategies and supports that require improvement to allow governments to use this information to provide policy.

Visit the survey here.


Research Opportunity for Parents Who Completed PEERS

Posted: June 2020
Project End Date: Ongoing

Are you a parent who has participated in PEERS? This study is looking for parents who have completed the PEERS program within the last three years who are interested in talking about their experience with PEERS. The study is hoping to learn about ways to improve interventions for parents of adolescents with autism and to determine how to best address parent’s needs.

Parents will be asked to complete a 45 to 90-minute confidential online interview using zoom. Participants will be asked questions about their experiences throughout the PEERS intervention, including which things about their experience were helpful, which were less helpful, and what experiences would have been helpful. Participants who take part in the study will be provided with a $25 gift card as an appreciation for their time.

This study is being conducted by Brittni Thompson as part of her Master’s thesis under the supervision of Dr. William Mckee at UBC. If you are interested in participating in this study, please contact Brittni Thompson at brittni.thompson@alumni.ubc.ca.


“Autism in Practice”: Establishing, Maintaining, and Understanding Friendship Among Adults Diagnosed with Autism in British Columbia

Posted: April 2020
Project end date: Ongoing

This study focuses on how adults in the BC Lower Mainland, who are diagnosed with autism establish and maintain friendships. To participate in this study, you must be: At least 18 years old, diagnosed with autism, live in the BC Lower Mainland. The study includes two parts, face-to-face interviews as well as participation in some of the activities that you engage in with friends (the latter is optional). However, during COVID-19 outbreak, only online activities will be used, and you will be asked to participate in phone or video interview (Zoom, FaceTime, Skype). Your participation is entirely voluntary. All of your responses and the information that you provide in this interview will be confidential. You will be offered a $35 Amazon gift card for your participation in the interview. Review the study flyer for more information. Liking or sharing this invitation may identify you as a research participant. Review the Study Flyer for more information. Liking or sharing this invitation may identify you as a research participant.

If you are interested in participating in this study, please contact Jad Brake at jad.brake@alumni.ubc.ca or 778-927-3111. If you have additional questions, you may also contact the Principal Investigator for this study, Prof. William McKellin, Department of Anthropology, w.mckellin@ubc.ca or 604-822-2756.


Family Experiences, Motherhood, and Neurodevelopment Study

Posted: April 2020
Project end date: Ongoing

Students from the Family and Developmental Psychopathology Lab at the University of Manitoba are investigating several areas of the parent-child relationship and family functioning among parents of children with ASD. Specifically, this study examines the broad autism phenotype (BAP), parental reflective functioning (PRF), and parenting styles amongst parents of children with ASD and their relationship to parenting stress, parenting outcomes, child externalizing behaviours, and family quality of life (FQOL). Mothers of children with or without ASD, between the ages 6 to 11, are asked to complete a survey to investigate the strengths of these families. If you are interested in taking part in this study, please click the follwing link that will lead you to a survey that will take approximately 30-45 minutes to complete: Mothering and Neurodevelopment Study.

Please contact Olivia Cadieux at cadieuxo@myumanitoba.caif you have questions.


Social Stressors in Childhood – Are We Asking The Right Questions?

Posted: February 2020
Project end date: Ongoing

The Anxiety Stress and Autism Program (ASAP) at University of British Columbia is currently recruiting for a study exploring stressful childhood experiences and how best to ask about those experiences in research. Their goal is to determine if a new measure of stressful life events is easy to use and captures the experiences of teens and young adults with and without autism. We’re recruiting teens and young adults (ages 14-22 years) with and without autism and their parents. Participants will complete an online measure and then a feedback interview 2 weeks later at our lab. The survey will ask about past stressful experiences and if they still bother you or your child. We will also ask some questions about your or your child’s current feelings and behaviors. Participants with autism will be asked to complete an interview and observation about social interaction.

If you are interested in participating in this study, please contact Connor Kerns at asaplab@psych.ubc.ca.