The MeASURe project aimed to find the best tools, such as tests and questionnaires, to measure the progress of children with autism up to age 6 years.
First, we asked people what they thought it was important to measure. Parents, children and adults with autism told us that happiness, anxiety and sensory overload were most important. Health and education staff said they needed tools to measure areas of difficulty. This was because these are important when deciding whether a child has autism, and in finding out what things help them.
Next we found all published studies which tracked the progress of children with autism, to find out what tools they used in measuring outcomes.
Between them, these studies used 131 tools, so we then looked for studies that told us how robust these tools were when used with children with autism.
We found tools that could be used to monitor some aspects of the progress of young children with autism, but not all. There was little or no evidence about whether tools that describe children’s social participation and wellbeing are useful for children with autism. We found good evidence for the usefulness of a small number of tools which measure autism characteristics and behaviour problems. When we showed these to parents and professionals at a Discussion Day, they pointed out flaws such as how questionnaires are presented.
New research is needed to improve this situation. Valued outcomes to assess include social communication skills, wellbeing, and quality of family life.
Main publication: McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P., et al. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, 19(41), doi:10.3310/hta19410.
Who was involved in this study?
The Principal Investigator for this study was Prof Helen McConachie
Also involved in the project from the Neurodevelopment and Disability Team were:
- Professor of Child & Adolescent Psychiatry
- Honorary Consultant Child and Adolescent Psychiatrist, Northumberland, Tyne & Wear NHS Trust
- Clinical Senior Lecturer, Newcastle University
- Honorary Consultant Paediatrician, Newcastle upon Tyne Hospitals NHS Foundation Trust
- Senior Lecturer in Clinical Psychology
- Doctorate in Clinical Psychology
- Research Associate
Also involved from outside the team were:
- Dr Jen Hanratty (Reviewer)
- Dr Nuala Livingstone (Reviewer)
- Dr Inalegwu Oono (Reviewer)
- Ms Shannon Robalino (Information specialist)
- Professor Gillian Baird (Autism expert)
- Professor Bryony Beresford (Qualitative reviewer)
- Professor Tony Charman (Autism expert)
- Ms Deborah Garland (Parent and young people consultation)
- Professor Jonathan Green (Autism expert)
- Professor Paul Gringras (Parent group consultation)
- Dr Glynis Jones (Young people consultation)
- Professor James Law (Systematic review expert)
- Professor Geraldine Macdonald (Systematic review expert)
- Professor Elaine McColl (Measurement expert)
- Dr Christopher Morris (Parent consultation; measurement expert)
- Professor Emily Simonoff (Autism expert)
- Dr Caroline Terwee (Measurement expert)
- Professor Katrina Williams (Autism expert)
Call: 0191 282 1396
MeASURe sits within the 'Engaging young people and families' research theme.