Addressing Quality of Life Priorities in Children and Adolescents with Autism Spectrum Disorder

Background:

In the past years, important progress has been made in assessing quality of life of persons with intellectual disability. However, individuals with autism spectrum disorder and comorbid intellectual disability are one of the groups which have had less benefits from these advances, especially in the childhood and youth stages.

Objectives:

The aim of this study is to assess quality of life-related personal outcomes in children and youth with autism spectrum disorders and a comorbid diagnosis of intellectual disability in order to identify needs and strengths in this construct’s various domains. It also responds to the demand of caregivers and practitioners for instruments with appropriate psychometric properties to facilitate evidence-based practices, evaluating progress and obstacles related to their children’s quality of life.

Methods:

Caregivers reported on the ASD KidsLife scale (Gómez et al., in press), which evaluates personal outcomes related to the quality of life in people with autism spectrum disorders and intellectual disabilities aged 4 to 21 years old. The scale comprises 96 items organized by eight dimensions proposed by Schalock and Verdugo (2002): emotional wellbeing, material wellbeing, physical wellbeing, personal development, rights, self-determination, social inclusion, and interpersonal relationships. The sample was composed of caregivers of 420 children and adolescents with autism spectrum disorders and comorbid intellectual disabilities, aged 4 to 21 years old (M=12; SD=4.7) who were enrolled in social, educative, or medical services in 78 Spanish centres.

Results:

The highest quality of life scores were obtained in the domains of material wellbeing and personal development, while the lowest results were observed in the domains of social inclusion, self-determination and interpersonal relationships. At the item-level, the majority of caregivers endorse that the confidentiality of the child’s individual evaluation is protected, the child is treated with respect, his/her rights are defended, his/her belongings and right to property are respected and he/she has an adequate hygiene and personal image. In contrast, caregivers also express concerns. For example, more than half of the participants report that their child does not take part in the creation of individual support plans nor participate in natural groups in the communities. Almost half of those evaluated cannot make self-endorsed choices in life areas and have insufficient information about their rights. Quality of life-profiles will be further evaluated in relation to both child and caregiver demographic characteristics.

Conclusions:

The implications of the study are discussed and specific recommendations are made to guide and plan professional practices in order to enhance the quality of life of children and adolescents with autism and co-occurring intellectual disability.