Tag Archives: autism lived experience research

Visualizing Chronic Pain Perception in Autistic Adolescents Through Digital Health Data

Researchers from the Boerner lab at BC Children’s Hospital Research Institute and the University of British Columbia are conducting a study to learn more about how an online website can help autistic youth track their pain and daily experiences. The researchers are also looking at how autistic youth view their own health information, like charts or pictures about pain and sleep. By learning this, scientists and doctors can better understand what autistic youth with pain go through and find ways to provide better care.

The researchers are looking for youth who:

  1. Have a diagnosis of Autism Spectrum Disorder
  2. Have chronic pain (pain that has persisted/recurred for 3 months or longer)
  3. Live in British Columbia
  4. Are between 13 and 18 years old
  5. Have basic reading and comprehension and communication skills in English (note: verbal communication is not required to participate)

The study contains a baseline questionnaire, daily surveys to complete over 7 days, and an online interview. Participants will receive a $20-60 gift card for their time.

Everyday pain experiences in autistic young people

Autistic children and young adults are at a higher risk of pain, but very little is known about how autistic young people experience everyday pain. With the input of autistic individuals, the research team hopes to better understand pain experiences in the context of autism and to identify priorities for treatment and further research.

The researchers are looking to hear from autistic participants aged 8-25, who live in BC.

The participant and their families will fill complete a baseline questionnaire. They will then get surveys to complete sent to their phone number or email—as preferred—3 times a day, for 2 weeks. The daily surveys will ask about pain and pain related experiences. Participants will receive a $20-60 gift card for their time.

Throughout the process, the participant’s privacy, comfort, and safety is a priority; they may skip any questions they’d like or exit the study at any time. Contact the research team at ASD&[email protected] or 604-875-2000 ext. 5445, to learn more!

Autistic Adults Sought for Online Survey on Mental Health Experiences, Self-Compassion, and Self-Stigma

The Autism Research Lab at the University of New Brunswick is seeking help recruiting adults (19 and older) who either have a formal diagnosis of autism OR personally identify as autistic for participation in an online survey looking at self-compassion, mental health, self-stigma, and attitudes towards psychological counselling. Self-compassion has emerged as healthy practice for improving mental health in autistic adults; however, there is limited research examining how self-compassion relates to autistic adults’ experiences of self-stigma (the internalization of negative stereotypes and prejudicial beliefs about autism) and attitudes towards receiving professional mental health support. We are hoping to address this knowledge gap through this research to inform development of mental health interventions tailored to meet the needs of autistic adults.

Participants are not required to provide proof of diagnosis to be eligible for this study and will be entered into a draw for a chance to win 1 of 5 $25 (CAD) Amazon gift cards upon completion of the survey.