Children with neurodevelopmental disorders (NDDs) like autism and ADHD often have behaviours of concern, such as violence towards themselves or others. These behaviours lead to many problems for these young people and their families. We want to help these children to have less behaviours. However, there is not a good instrument – meaning a questionnaire or survey – to measure these behaviours. The instruments that exist have some problems, like not measuring how behaviours affect the everyday lives of neurodiverse children, measuring behaviours that are not causing concern for neurodiverse people, like stimming (a calming behaviour), or leaving out categories of behaviour we know cause problems, like fecal smearing. It is hard or even impossible to treat something you can’t measure. We want to change that by developing and testing a new instrument to measure behaviours of concern in children with NDDs. In partnership with people with lived experience (neurodiverse children and youth, caregivers, doctors, educators and others), our primary objective is to create and test this instrument. We hope this will make it easier to study behaviours of concern in children with NDDs, leading to better ways to help these young people and their families.

 

Award

  • Kids Brain Health Network: $197,000

 

Partners

  • Blossom Group
  • Society for Autism Support and Services (SASS)
  • Neurodevelopmental Disorders (NDD) Care Coordination Project
  • University of Calgary

 

Team

  • Principal Investigator: Dr. Sarah MacEachern
  • Co-Principal Investigator: Dr. Deborah Dewey
  • Parent Partner: Greta Heathcote
  • Parent Partner: Suzanne Deliscar