Autistic children and young adults are at a higher risk of pain experiences, but very little is known about how autistic young people experience chronic pain (pain that lasts 3 or more months). 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 research team is looking to interview autistic young people (ages 13-25) with chronic pain experiences, who are living in BC. The team is also looking for parents of autistic young people with chronic pain, based in BC. Accommodations can be made for non-verbal and non-English speaking participants.

The participant will complete an online demographics questionnaire and a questionnaire relating to their pain experiences. The participant will then take part in an online interview with a researcher to discuss their or their child’s experiences living with chronic pain Participants will receive a $50 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. Participants can also complete the interview with their camera off, answer questions in the chat, complete the interview with a support person, or use any communication tool. Contact the research team at ASD&[email protected]  or 604-875-2000 ext. 5445 , to learn more!

A research team at York University is inviting autistic youth (13-25 years of age) to participate in an online survey that looks at experiences of positive well-being (i.e., flourishing) among young people. Their goal is to determine if a flourishing questionnaire that was made for non-autistic youth works for autistic young people, and if not, how it can be adapted to capture autistic experiences of flourishing.  

Autistic youth can take part in this study if: 

• They are between 13 and 25 years of age. 
• Located in Canada and the United States. 
• Have a diagnosis of autism or self-identify as autistic.    

What does participation involve? 

• Completing a 15-minute online survey about flourishing and autistic traits.
• For those under 16 years of age, a parent or caregiver will be asked to provide consent for participation and complete the autistic traits questionnaire about the youth. 
• The survey can be completed alone or with a support person. 

Here is the link to their study sign-up sheet! A member of their research team will then send participants the survey directly. https://yorku.questionpro.ca/t/AB3urAcZB3u32R

What is it?

Looking for culturally and linguistically diverse (CLD) students who are on the Autism Spectrum (aged 16-25), and their caregivers, to participate in a study on inclusion experiences in secondary school communities.

How does it work?

Students:

• Initial 45-60 min interview
• 1-2 weeks photo voice activity
• 30-35 min follow-up interview

Caregivers:

• 45-60 min interview

*You will receive a $25 Chapter-Indigo Book Store gift card.

Who can join:

• CLD students in Canada aged 16-25.
• Caregivers of students who are participating in the study.

Why join?

This research focuses on student lead narratives, which are fundamental to informing educational and social practices, and in reforming policies related to the inclusion of CLD students with ASD in secondary school communities.

More information:

For more information, or to volunteer to participate in this study, please contact: Maria Shaikh (PhD Student at Queen’s University). [email protected]

This study has been reviewed for ethical compliance by the Queen’s University General Research Ethics Board.

The USC ABA program’s diversity lab is aiming to center the voices of autistic adults who have received ABA. The study aims to understand their experiences and desires for services, demonstrate the impact that ABA have in a person’s life, and offer insights on how ABA can better adapt to the different needs and values of the autistic community. To qualify for an interview, participants must be autistic adults (diagnosed or self-identifying) that are 18 years of age or older, have had ABA services for at least a total of 6 months at any point in their life time, and have the ability to communicate independently (vocally or non-vocally). Interviews will be conducted over Zoom and take approximately 1 hour. Participants will be compensated with a $20 Amazon gift card.

Researchers at the University of British Columbia are investigating how social and emotional skills (the way in which we are aware of and can manage our own emotions) may predict levels of anxiety and depression in autistic children and youth. Parents/caregivers of children, aged 9-15 who have a medical diagnosis or an educational classification of ASD, will be asked to complete a 17-20 minute online survey. This research will provide rich data to assist schools and communities in understanding and creating environments to support mental health. Participants will have the choice to be entered into a draw to win 1 of 3 $50 gift cards.

The researcher is a University of British Columbia Okanagan Masters of Nursing Student conducting qualitative research with autistic children and their caregivers to explore experiences in rural emergency departments across the interior of British Columbia. The inclusion criteria includes primary caregivers who have accessed a rural emergency department within the last two years with their child aged 7-13 years with a DSM-4 OR DSM-5 diagnosis of autism. Participants must be comfortable speaking English.  Through recorded Zoom interviews that will last approximately 45-60 minutes, the researcher is hoping to establish the barriers and facilitators autistic children and their caregivers are experiencing in accessing care, and use this data to advocate to health authorities for increasing supports and strategies to improve health outcomes for these children. The strategies proposed will be guided by the lived experiences of these families and their voiced needs. These strategies could potentially include education for healthcare staff, including alternate care pathways to ensure the caregiver has a way to communicate individual care needs of their child, and physical supports, such as sensory toolkits. As the researcher is a mother to two autistic children, the desire to engage in this research arose from her own lived experiences of challenges accessing safe and supportive care in the emergency department.

The overall objective of this study is to explore the role and conceptualization of compassion and transition expectations amongst pre-transition youth (i.e., ages 12-17) with childhood-onset disability (cerebral palsy (CP), autism and childhood-onset ABI), their family caregivers and healthcare providers to inform the development of a virtual peer navigation program.

The following specific research objectives will be addressed:

Objective 1: From the perspective of pre-transition youth with CP, autism and childhood-onset ABI, their family caregivers and healthcare providers, to explore (i) how compassionate care is conceptualized and (ii) the expectations of transition from the pediatric rehabilitation to adult rehabilitation and community settings, experiences of transition planning and how this conceptualization of compassion could be integrated into future transition strategies.

Objective 2: To explore how virtual peer navigation can provide compassionate care and facilitate the transition from pediatric to adult rehabilitation and community settings from the perspective of pre-transition youth with CP, autism and childhood-onset ABI, their family caregivers and healthcare providers.

WHAT’S INVOLVED?
– Sharing your experiences and expectations around transitioning to adult health and community programs
– Your perspective on what an ideal virtual peer navigation program would look like
– Discussing what compassionate care means to you

Participate in a virtual 60-minute interview.
You will be compensated for your time.
For more information, contact Eleni Patsakos: [email protected]