Denisa Dashi is a postgraduate student at the University of Stirling undertaking a master’s degree in Psychology of Autism. Local Autism Strategies, Stirling Council, Autism Forth Valley and University of Stirling (Psychology Department) are conducting interviews as part of a research study to search the Quality of Life (QoL) of individuals with Autism Spectrum Disorder (ASD) and Additional Support Need (ASN).
Quality of Life is defined by the World Health Organisation as the individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. Very little research has been undertaken in the field of autism in relation to QoL due to the challenges of assessing this well-being indicator in people with social communication impairment. Measuring QoL in this disability group nonetheless is of primary importance, to support individuals optimally and plan and commission services. This research therefore would like to include people close to them to describe the perceptions about life they may experience. This is called assessment by proxy.
The purpose of the project is to assess the QoL of individuals with ASD, age 18-25 comparing to age-matched individuals with ASN and ASD and determine the factors that impact on QoL. The factors that will be explored include the level of support received by the individuals, their life style, their level of autism and challenging behaviour, and the impact of their disability has.
The assessments will use standardised assessments of adaptive behaviour and QoL, using the Vineland Adaptive Behavior Scales-II and two versions of the QoL assessments, the “World Health Organisation Disability Assessment 2.0” (WHODAS 2.0.) and the WHOQOL-BREF. The questionnaires will be completed by interview with carers or family members (interview by proxy) and are simple and should take 60-90 min to complete. We are unable to offer compensation for participating in this study. However, your participation will be a valuable addition to our research and findings could lead to greater public understanding of the quality of life of individuals with ASD and ASN.
Please feel free to ask any questions that might come up about the research procedure or any other detail of the project. This project is under the guidance of Dr. Lorene Amet Autism Development Officer for Stirling and Clackmannanshire. She is a trained neuroscientist, with 12 years of academic research and a further 12 years of experience in autism, including special education and diagnosis. The academic supervisor is Dr Magdalena Ietswaart, lecturer in Psychology at the University of Stirling and in charge of the MSc programme in Autism Research.
If you are willing to participate please suggest a day and time that suits you and Denisa will do her best to be available and come visit you. If you have any questions please do not hesitate to ask the research team:
Ntenisa Ntasi, MSc Psychology in Autism student, University of Stirling