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.


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.


Parent Training through Telepractice

Posted: June 2018
Project end date: March 2019

Are you a Japanese parent(s) of a child with Autism living within two hours’ drive from Vancouver whose child exhibit problem behaviour at home? Researchers at the University of British Columbia are looking for a Japanese- speaking parent(s) of a 3- to 6-year-old child with autism who is willing to receive parent training via telepractice to improve the child’s behaviour in a home routine. Telepractice involves the use of telecommunication technology to link a professional with a client who lives at a far distance. The video camera on the computer monitor is employed by users to communicate by sight and sound in real time. The study will last up to nine months. You will receive weekly training from a UBC graduate student researcher to implement a behaviour support plan collaboratively created with you. The effectiveness of procedure in terms of improvement in child behaviour and parent implementation of the plan, as well as acceptability and feasibility of the plan will be examined.

If you are interested in the study, please contact Serina Ando (sando@alumni.ubc.ca) for more information.


How Do Children Learn From Others?

Posted: August 2017
Project end date: Ongoing

Do you have a child between the ages of 7 and 12 years old? The Autism and Developmental Disorders Lab at Simon Fraser University is looking for parents and their children (both with and without autism) to complete a fun, 30-minute online study! This study involves answering a few brief questions and then video-recording you and your child learning how to make some origami figures. Everyone who completes this study is entered in a draw to win a new Apple iPad, with a 1 in 50 chance to win! If you have more than one child between the ages of 7 and 12, you can participate with each child separately and be entered into the draw for each child!

If you’d like to complete the study, please click here. For more information, please contact Hilary Aime at haime@sfu.ca.


A Cross-cultural Study of Stress Coping in Parents of Children with Autism Spectrum Disorder

Posted: June 2017
Project end date: Ongoing

It has been demonstrated in previous studies that mothers of children with Autism experience post-traumatic growth, a positive response that may result from the numerous difficulties associated with raising a child with a disability. The purpose of this research study is to evaluate and compare post traumatic growth experienced by families of children with ASD in mainland China, to families of children with ASD in Vancouver, Canada. The dimensions to be evaluated and compared are: the socio-demographic characteristics of the family; the quality of services available to the family; the parenting style; and the level of family involvement.

For more information, please see this brochure or contact Bella Chan at bella_chan@msn.com.


 

How Do People with ASD Understand Language?

Posted: January 2017
Project end date: Ongoing

Research is currently underway at the BC Children’s Hospital Research Institute (BCHRI) to understand how individuals with ASD process language. The study, led by Dr. Anthony Bailey and Dr. Keith McLarren, is conducted with the support of UBC. The study uses MRI and EEG scans to take pictures of your brain activity as you read sentences. If you are 14 to 40 years old, live in B.C. and have an ASD diagnosis, you are invited to participate in our study. We are especially interested in people who were late talkers. You must speak English as your first language and be able to read at a grade 5 level or above to be eligible for the study. Those who have epilepsy should not volunteer for this study.

For more information and to sign up, please contact Dr. Keith McLarren at keith.mclarren@ubc.ca or 604-822-4100.

For more details see: Brochure or Study Information


Virtual Reality Intervention for Autism

Posted: January 2017
Project end date: Ongoing

The goal of the project is to develop a VR gaming program for children with autism spectrum disorder (ASD) to facilitate social participation, perspective taking, and emotion recognition. We are looking for parents of children with ASD and clinicians working with children with ASD, to provide us feedback about the content of the program. Involvement in the study will include filling out two online questionnaires.

For more information: Alyssa Rowe akrowe@alumni.ubc.ca or download this letter.


South Asian Families with Children with Special Needs: The Role of Trust in Their Relationship with Schools

Posted: September 2016
Project end date: Ongoing

South Asian parents who have children with a disability may experience challenges that are unique to our community. I would like to learn more about the experiences South Asian parents have with their child’s school, focusing on how trust is involved in that relationship. I hope that the results of this study will help school professionals learn different ways to establish trust with South Asian parents.

If you are a South Asian parent of a child who has a disability, or if you know a South Asian parent who may be interested in participating, please contact me. My name is Shalini Arya, I am a Master’s student in School Psychology at UBC.

Contact Information: 604-822-4602 or childrenfamiliescommunitieslab@gmail.com


Social and Emotional Behaviour in Children and Adolescents with ASD

Posted: September 2016
Project end date: Ongoing

Does your child struggle to regulate their emotions during times of anxiety or distress? Researchers at Queen’s University are interested in understanding how children and adolescents with ASD regulate their emotions, and how these regulatory abilities are associated with different ASD symptoms. Your participation in this study involves completing ONLINE questionnaires FROM HOME, and will allow future researchers to understand and improve emotion regulation abilities in youth with ASD.

Who can participate? All parents and primary caregivers of children between ages 5 and 17 on the autism spectrum. All adolescents (ages 12 to 17) who are able to independently respond to two online questionnaires with a total of 60 questions.

How to participate: Primary caregivers are invited to complete an ONLINE survey package of three short questionnaires, requiring approximately 15 to 20 minutes to complete. Adolescents with sufficient reading abilities are then invited to complete two short questionnaires, requiring approximately 10 to 15 minutes to complete. All questionnaires are included within a single online package, accessible at http://queensu.fluidsurveys.com/s/er-asd/

Any questions can be directed to Dr. Elizabeth Kelley at asd@queensu.ca.

For more information: www.queensu.ca/psychology/autism-spectrum-disorder-studies
Download flyer


Relationships and Sexuality in Autism

Posted: April 2016
Project end date: Ongoing

How have you come to learn and experience your sexuality and romantic relationships?

Researchers at Deakin University, Australia, are looking to better understand the experiences of relationships and sexuality that are unique to young adults with Autism as they navigate through adolescence. It is hoped that this research will allow for a better understanding of the wants, needs, and positive factors that all individuals on the spectrum face as they pursue a romantic and sexual life that best meets their needs and desires. Furthermore, it is anticipated that findings will work to inform parents, partners, and supporters of ASD, while shaping education and support services aimed at establishing a fulfilling romantic and sexual life for all.

If you are between 12-24 years old and would like to share your thoughts, it would be very much appreciated if you would take 30 minutes of your time to complete this anonymous questionnaire: http://psych.hosted-sites.deakin.edu.au/sbs/

If you have any queries or concerns in regards to the study, the researchers are more than happy to answer answer any questions at: lpecora@deakin.edu.au