Newcastle University Adult Autism Spectrum

The Adult Autism Spectrum Cohort study is pleased to announce the findings of a study hosted by ASC-UK:

 

Evaluating how Quality of Life is measured with adults on the autism spectrum

 

The study focused on quality of life, that is, how satisfied with their life a person is, in relation to their goals, their expectations, and things that concern them.  The research team carried out extensive consultation with the autism community. They heard from autistic people that issues such as sensory sensitivity, financial insecurity, and barriers to accessing services are not well covered in the quality of life measure most often used in research – the WHO quality of life measure (WHOQoL-BREF).  As a result the research team developed additional autism-specific questionnaire items that we call ASQoL.

 

We thank Research Autism and the Shirley Foundation who funded the study (2016-7), and all the hundreds of participants who contributed their time and life experience to the work.  Over 400 autistic people participated, including around 15% who either require help in completing questionnaires, or who had someone else complete the questionnaire on their behalf.

 

As a result of this study, it is now possible to measure quality of life of autistic adults with a combination of the WHOQoL-BREF, the WHO Disabilities module (covering issues such as inclusion and autonomy) and the ASQoL (48 items in total). We hope that this combined measure will be useful in evaluating services.

 

The development and initial evaluation of the ASQoL is reported in the following journal paper:

McConachie, H, Mason, D, Parr, JR, Garland, D, Wilson, C & Rodgers, J. (2017) Enhancing the validity of a Quality of Life measure for autistic people. Journal of Autism and Developmental Disorders (http://link.springer.com/article/10.1007/s10803-017-3402-z).

 

To access more information about using and scoring the ASQoL, click here: http://research.ncl.ac.uk/adultautismspectrum/cohortprojects/