Thinking differently? Autism and quality of life

Suzanne Jane Smith,Susan Roulstone,Neil Summers,Jane E Powell

doi:10.1108/tldr-05-2018-0014

Suzanne Jane Smith, Susan Roulstone + Show 2 more

Open Access

https://doi.org/10.1108/tldr-05-2018-0014

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Abstract

Purpose: This study explores perceptions of Quality of Life (QOL) of people with a dual diagnosis of learning disability and autism to facilitate a better understanding for clinical practice and service provision. Design/methodology/approach: Mixed methods were used to gain perceptions of QOL from 20 individuals referred to their local diagnostic service. Individuals completed questionnaires and participated in in-depth interviews which were thematically analysed. Findings: Subjective wellbeing scores were lower than those found in previous research. Social interaction was raised extensively with participants describing both positive and negative perceptions. The need for tailored social support and the value of individual control over environment were raised. Research Limitations/Implications: The study was small in scale and limited to subjects who had been referred for a diagnostic service. The study identified the need for further study, particularly in relation to the social relationships domain of QoL, and the impact of stress and anxiety. Practical Implications: Social Implications: Originality/Value: This study demonstrated that it is possible to access views from this group and that these views are nuanced. It suggests differences between reported QoL in people with learning disabilities who are and who are not autistic. Service design and individual approaches could be improved by a better understanding of these differences.

Highlights

There is a commonly held perception that people with a diagnosis of an Autism Spectrum Condition (ASC) can show differences in their perception of the world (Attwood 2001)
This study explores perceptions of Quality of Life (QOL) of people with a learning disability and autism to facilitate a better understanding for clinical practice
It is reasonable to consider the possibility that Autistic individuals may perceive their Quality of Life (QoL) differently to those without this diagnosis

Summary

Introduction

There is a commonly held perception that people with a diagnosis of an Autism Spectrum Condition (ASC) can show differences in their perception of the world (Attwood 2001). A number of studies suggest structural and functional differences in the brain for Autistic individuals compared with those without the diagnosis (Braden et al 2017, McAlonan et al 2002). Previous studies have suggested that perceptions of subjective QoL for people with a learning disability are the same or more positive that for the ordinary population (Verri 1999, McGillivray et al 2009). This paper presents evaluation of theories of QoL and literature in relation to learning disability and ASC. It will outline a small-scale study exploring QoL perceptions for a group of participants with mild or borderline learning disability and ASC and consider the relevance of this to current thinking and practice

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