Participating in Autism Research

Ongoing Autism Research – Volunteers Needed

Below is a listing of university affiliated research projects which 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.


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.


Autism Disclosure Decisions in the Workplace

Posted: October 2020
Project End Date: December 2020

For this research project, a needs assessment with youth and young adults with autism will be conducted to determine what they need to make autonomous decisions about disclosing their autism diagnosis and corresponding workplace needs at work. Approximately 5 focus groups (2 all boys, 2 all girls, 1-2 gender non-binary) with youth with autism, who are currently employed or have work experience, using Zoom Video Conferencing Software, will be conducted. Through these focus groups, youths’ needs related to the disability disclosure process and potential gender differences within these needs will be explored. Knowledge gained from this phase will help to increase the knowledge base regarding how youth and young adults with autism understand and experience the disclosure process, as well as to identify their needs related to facilitating disclosure decision-making. Findings from this phase will also help to inform future phases of a larger-scale Knowledge Translation study to eventually co-design disclosure decision-aid tools for youth and young adults with autism.

If you are interested in participating, please contact Vanessa Tomas at vanessa.tomas@mail.utoronto.ca.


Developmental Coordination Disorder (DCD) and Autism Spectrum Disorder (ASD) Imaging Study

Posted: September 2020
Project End Date: August 2021

Developmental coordination disorder (DCD) affects 5-6% of the school-age population and significantly affects a child’s ability to learn motor skills. DCD also affects many children with autism, but the motor difficulties are poorly understood and rarely the focus of therapy. The best treatment for DCD is called CO-OP which involves problem-solving and thinking skills. It’s unknown if children with DCD and autism would benefit from CO-OP.

Using magnetic resonance imaging (MRI), this study from the BC Children’s Hospital Research Institute will increase our understanding of how the brain differs in children with DCD and autism and determine if rehabilitation can change the brain and improve outcomes of these children. Researchers are seeking children with Autism and diagnosed/suspected DCD (8-12 years old) to participate in an MRI study to compare brain structure and function between children with Autism + DCD and typically developing children. Participants will receive 10 weeks of occupational therapy to work on child-specific motor goals.

For more information, please see the Study Flyer. If you are interested in participating, please contact Gisela Gosse at ggosse@cw.bc.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.


Workplace Disability Disclosure Decisions Among Youth and Young Adults with Autism Spectrum Disorder

Posted: September 2020
Project End Date: March 2021

Researchers at Holland Bloorview Kids Rehabilitation Hospital are looking to explore the needs of youth and young adults with autism related to making disclosure decisions about their autism diagnosis at work.  A needs assessment will be conducted to determine what they need to make autonomous decisions about disclosing their autism diagnosis and corresponding needs at work. Participants will be asked to take part in one virtual focus group session using Zoom (around 2 hours) with other youth with autism via Zoom Video Conferencing Software. Through these focus groups, youths’ needs related to the disability disclosure process will be explored and potential gender differences within these needs will be assessed. Knowledge gained from this phase will help to increase the knowledge base regarding how youth and young adults with autism understand and experience the disclosure process, as well as to identify their needs related to facilitating disclosure decision-making.

For more information about this study, see the Study Flyer. If you are interested in participating, please contact Vanessa Tomas at vtomas@hollandbloorview.ca.


Social Competency and Autism Spectrum Disorder (ASD) – Online Study

Posted: August 2020
Project End Date: August 2021

Researchers at Western University are looking for participants to take part in a study that aims to understand social competence and how it relates to individuals with ASD. Individuals who are older than 16 years old are invited to participate in this study. We are looking for Autistic Individuals, Parents of Autistic Individuals, Teachers, and Professionals that work with Autistic Individuals.

If you are interested and agree to participate you would be asked to: fill out a series of questionnaires and watch brief video clips and provide ratings on these video clips. Your participation can be completed online and will take about 2 hours to complete. In appreciation for your time, you will receive $20.

For more information about this study, or to volunteer, please contact: Dr. Nichole Scheerer, Western University, sprlab@uwo.ca


Healthcare Experiences of Adults with ASD

Posted: August 2020
Project End Date: July 7, 2021

This study from the University of Manitoba is seeking adults with an ASD diagnosis to share their experiences in healthcare. It is completely online and consists of 3 phases. Phase 1 is a short demographic and screening questionnaire. Participants who complete this phase will be entered into a draw for one $20 (CAD) e-gift card. Phase 2 consists of open-ended long-answer questions about experiences in healthcare. Participants who complete phase 2 will receive a $20 (CAD) e-gift card in addition to their name being in the draw for Phase 1. Phase 3 will allow participants to review how the researcher interpreted and summarized their responses.

Participants must:
a) be Canadian or American,
b) be 20+ years old,
c) be comfortable reading and responding in English,
d) have received an official diagnosis of ASD/Asperger’s/PDD-NOS, and
e) be able to attend your medical appointments their own (e.g., have at least some of your medical appointments without a family member or support person in the room with you).

If you are interested in participating or would like more information, please contact the primary researcher Michelle Wright (PhD Candidate) umwrig28@myumanitoba.ca. This study is supervised by Dr. Janine Montgomery janine.montgomery@umanitoba.ca.


Life beyond Trauma: 1-on-1 e-health program for parents of neurodiverse children

Posted: July 2020
Project End Date: August 31, 2021

Have you experienced traumatic situations with your neurodiverse child?
Have you experienced Posttraumatic Stress, e.g. disturbing memories of traumatic situations with your neurodiverse child?
The e-health program is designed to support parents who struggle with such challenging memories. The program consists of:

  • 12 confidential one-on-one sessions with a trained trauma coach
  • Free of cost; Canada-wide
  • Short surveys after program with honorarium
  • Video chat sessions – no need to leave your home
  • Discuss joyful and challenging experiences throughout your life
  • Based on Narrative Exposure Therapy (NET), known to help persons who have experienced multiple traumas

For more information about how to participate, visit the Life Beyond Trauma website.


Measuring Sound Sensitivity Study – Online

Posted: July 2020
Project End Date: Ongoing

This study, being carried out by Simon Fraser University’s Autism and Developmental Disability Lab, is investigating how autistic and non-autistic adults (ages 19+) experience sounds in their everyday environment, and how sensitivity to noise, when it occurs, impacts daily living and mental health. You do not need to have sensitivity to noise to participate in this study.

Participants will be asked to fill out a series of questionnaires, including basic information about themselves, their social behaviours, experiences with sounds, and questions about satisfaction with various areas of life. The study should take approximately one hour. As a thank-you for your time, you will be entered into a draw for one of four $50 (CAD) Amazon gift cards.

For more information and to access the study, please visit our website. If you have any questions, please email study coordinator Troy Boucher at tboucher@sfu.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.


ASD Cognition Study for Children and Youth

Posted: November 2019
Project end date: Ongoing

Kwantlen Polytechnic University’s Lifespan Cognition lab is looking for children diagnosed with Autism Spectrum Disorder, and between 3 and 17 years, to take part in a paid psychology study examining children’s thinking and the way they understand and learn from others. The study takes place on-campus at KPU Surrey (72nd Avenue and 126th Street) or KPU Richmond (8771 Lansdowne Rd), and also has the potential for in-home sessions in the Lower Mainland. The study involves fun, hands-on activities, and ranges between 50-90 minutes per child.

Parents/guardians of child participants will receive $30 and child participants will receive a small prize. Travel expenses (e.g., parking, transit) will be reimbursed up to a maximum of $5 with proof of purchase (receipt, parking/skytrain ticket).

If you are interested, email lifespan.cognition@kpu.ca or call 604-599-2162 to learn more.


Adulthood among Individuals with Autism Spectrum Disorder (ASD)

Posted: November 2019
Project end date: Ongoing

Researchers at Dalhousie University are investigating adulthood and resources to support adults with autism spectrum disorder (ASD) across Canada. This project aims to uncover factors and features of resources, community services, and/or technologies that improve the adulthood experience from the perspectives of adults with ASD, their parents, and healthcare providers. In doing so, we strive to gain a better understanding of ways to better support individuals with ASD during adulthood.

Recruiting adults over 25 years of age with high functioning ASD, parents/family members of such a person, or healthcare service providers for individuals with ASD. Participation in this project will entail attending an interview virtually or face to face. Interviews can take place in person, over skype or the phone based on your personal preference. You have the option to withdraw from the study at any point. By participating in this interview, you will be given a gift card (e.g., Amazon), valued at $30.

If you are interested to participate in this study or have any questions, please contact the research team via email at resource@dal.ca.


Virtual Mindfulness for Autistic Adults

Posted: August 2019
Project end date: Ongoing

Research suggests that autistic adults can feel stress, but there are not many services for them. When autistic adults get support, they are better able to cope, and often report psychological benefits. We would like to explore whether learning mindfulness skills virtually is helpful to autistic adults. The mindfulness groups are a skill-based group that will be used to teach mindfulness techniques that research has shown to be effective at reducing stress and promoting well-being.

Participation in these groups consists of attending six weekly sessions from September 26th to October 31st that are 60 minutes in length over the internet. To help us evaluate how well these groups work, we will ask participants to complete a psychological questionnaire at 3 different times: before the group begins, after the group finishes, and 3 months later. This questionnaire will help us better understand how this group has influenced participants’ sense of well-being. Should participants not want to participate in the research study, this will not affect their participation in the virtual mindfulness group. See Study Flyer for more information.

If you are interested in participating in this study, please contact Brianne Redquest at
brianne.redquest@camh.ca.


 

Technokids: Exploring Daily Electronic Media Use of Children With and Without Autism

Posted: July 2019
Project end date: Ongoing

This study will examine children’s electronic/digital media activities like watching Netflix or surfing the Internet and their use of different media devices like computers and smartphones in an online survey. Patterns of media use observed between children diagnosed with Autism Spectrum Disorder and children without any mental health diagnoses will be compared to understand how their electronic media use might be similar or different. This online survey will take approximately 45 to 60 minutes to complete. Eligible Participants are parents or caregivers of one or more 4 to 11-year-old children, both with or without a diagnosis of Autism Spectrum Disorder who have used electronic media within the last 30 days. If you are eligible, you can choose to be entered into a drawing for one of twenty $10 e-gift cards fory our participation.

If you are interested in participating in this study, please contact Eric Gilliland at technokidstudy@gmail.com to receive the link to the online study.


Challenges and Facilitators During Transition to Adulthood of Adolescents with Autism Spectrum Disorder (ASD)

Posted: July 2019
Project end date: Ongoing

Researchers at Dalhousie University are conducting a project to investigate the perception and experiences of youth with autism spectrum disorders (ASD), their parents, and clinicians during transition of adolescents with ASD to adulthood. This project aims to identify the barriers and facilitators during transition of youth with ASD to adulthood from the perspectives of individuals with ASD, their parents, and health care providers. This project is looking to recruit “youth with high functioning ASD”, “parents of individuals with ASD”, and “healthcare providers in the field of ASD”. Participation in this project will entail attending an interview, face to face or over phone or skype, in which you will be asked to share your insights on the available services or resources during transition of youth with high functioning ASD to adulthood. Interviews can take place in person, over skype or the phone based on your personal preference. This study will take about 60 minutes to complete at the preferred location. Participants have the option to withdraw from the study at any point. 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 to participate in this study or have any questions, please contact the research team via email at resasd2@dal.ca.


Healthcare services, stress, and resilience among Canadian children with disabilities

Posted: July 2019
Project end date: Ongoing

Researchers at Dalhousie University are conducting a study to investigate stress, resilience, and quality of healthcare programs/services for families of children with developmental disorders including autism spectrum disorder (ASD). The project aims to explore resilience and stress experienced by families of children with disabilities including ASD and their strategies to cope with challenges from the perspectives of parents and healthcare providers. The project welcomes “parents of children with ASD” and “clinicians in the field of ASD” to share their insight via an online survey. This study will take about 30-45 minutes to complete. Participants will have the option to save the data and return to the online survey and complete it at a time that is convenient for them. By participating in the survey, participants will have the chance to be entered into a draw to win one of 30 gift cards (e.g., Amazon, based on participants choices), valued at $50.

If you are interested to participate in this study or have any questions, please contact the research team via email at resasd@dal.ca.


Sound Sensitivity Study

Posted: January 2019
Project end date: Ongoing

Are you a parent to an adolescent (aged 13-18 years) on the autism spectrum? Does your child experience issues with sound sensitivity that impacts daily life? SFU Researchers (Dr. Elina Birmingham, Dr. Grace Iarocci) want to hear from you! Recruitment is ongoing for individuals with ASD aged 13-18 years and their parents. The study involves an initial interview session where adolescents (and parents) will be asked about about their experiences dealing with over-reactivity to sounds in their environment. This will be followed by 3 separate testing sessions where participants will listen to (at a low volume) a variety of different sounds while their bodily reactions are monitored with a non-invasive wristwatch. Research will take place at SFU and will take approximately 7 hours over 4 sessions (for adolescents with ASD) and 3 hours over 1 session (for parents). As a thank-you for your time, adolescents with ASD will be offered $20/hour or portion thereof; their parents will be offered $10/hour or portion thereof.

If you are interested in participating, please contact research coordinator John Yang, john_yang_3@sfu.ca.


Participants Needed for UBC Study on ASD and Bilingualism

Posted: September 2018
Project end date: June 2021

Researchers at the University of British Columbia are seeking monolingual (i.e., only English-speaking), and bilingual six to ten year-olds with a formal diagnosis of Autism Spectrum Disorder to participate in a study exploring bilingual advantages in working memory and attentional control. Participation involves a two hour session at the participant’s home, and will include a parental questionnaire and interview, and language and cognitive assessments/games. All participating children will receive an educational toy or book at the end of the session.

If you are interested in this study, please contact Carolyn Norton (carolyn.norton@alumni.ubc.ca) for more information.


Addressing the Needs of Students with Autism with Self-Injurious Behaviour: A Narrative Inquiry

Posted: July 2018
Project end date: June 2021

This study aims to explore the experiences and perceptions of families who have school aged children or young adults with autism (or other developmental disabilities) with a history of self-injury to gain insight into the experiences and perceptions of families and inform school decision-making regarding supporting students with self-injurious behaviour in school settings. Research participants are asked to participate in a face-to-face interview at a location and time of choice. If agreed, participants will be asked questions concerning their experiences in parenting and supporting children with autism who exhibit self-injurious behaviour such as head banging, biting and punching. Participants will be asked specific questions about the supports provided to their child, and their experiences in school. Participation will require an interview lasting approximately 60 minutes and an additional 15-30 minutes to review the written transcript. With permission, the interview will be audio-recorded.

If you are interested in this study, please contact Joanne Drew (jdrew@sd44.ca) for more information.