Understanding the functioning of people on the autism spectrum means understanding, holistically, how they live their everyday lives. Historically, the assessment of functioning has focused on issues relating to the impairments of people with autism, while neglecting aspects related to the environment and their personal strengths.
However, things are changing. There are calls from people living with autism and their families for both service providers and research to take a more holistic view of their everyday lives. This includes understanding their challenges, but also their strengths.
Developing and evaluating an assessment of functioning tool for individuals on the autism spectrum
There is currently no widely accepted assessment of functioning tool taking a holistic approach to capturing ability and disability in autism. However, the International Classification of Functioning, Disability and Health (ICF) Core Sets for autism have recently been developed for infants, children, and adults, enabling the creation of new assessment of functioning tools in each of these age brackets. The aim of this research project is to develop and evaluate an assessment of functioning tool for school-aged children on the autism spectrum, based on the ICF Core Sets for autism. This project is utilising inclusive methods of co-production, involving individuals on the spectrum and their families in the research process. This project represents an important first step towards increasing the usability of the ICF Core Sets for autism.
Emily D’Arcy is a PhD student with CARG and the Telethon Kids Institute and is currently working as an occupational therapist. In 2017, Emily conducted her honours research on the perspectives of individuals on the autism spectrum and their families regarding the diagnostic process for Autism, as part of the wider project to develop a national guideline for diagnosing Autism in Australia.
Emily’s PhD project is to develop and evaluate an assessment of function for children aged 0-5 on the autism spectrum based on the ICF-CY Autism core set. This will allow the function of children on the autism spectrum to be assessed holistically, which will then improve the links to individualised and appropriate early intervention within the NDIS system. This will involve evaluating the current assessment methods available, developing the ICF-based assessment, and evaluating its validity, reliability and usability, including the perspectives of individuals on the autism spectrum, their families and health professionals.