THE QUALITY OF LIFE OF FAMILIES WITH CHILDREN WITH AUTISM SPECTRUM DISORDERS IN COMPARISON WITH THE QUALITY OF LIFE OF FAMILIES WITH NEUROTYPICAL CHILDREN: SURVEY RESULTS AND INTERVIEWS
Authors:   School of Geography, Earth and Environmental Sciences, University of Birmingham, KUZNETSOVA IRINA B. , MUKHARYAMOVA LAISAN M. ,   Kazan State Medical University, SAVELEVA ZHANNA V. ,   Kazan (Volga Region) Federal University, GARAPSHINA LEYLYA R. ,   Kazan State Medical University, KUZNETSOV MAXIM S. ,   Kazan State Medical University
Published: July 2022

Introduction. The significant increase in the number of people with autism spectrum disorders (ASD) today makes it relevant to study the quality of life of families raising children with ASD compared to families of neurotypical children. Aim. The aim of the study was to identify the quality of life of families with children with ASD and to compare it with the quality of life of families with neurotypical children to determine the level of deprivation. Material and Methods. The study involved: 1. А survey of parents of neurotypical children and children with autism, based on The Beach Center on Disability at the University of Kansas «Concepts and Methods for Measuring Family Quality of Life» questionnaire. Verification of this instrument was ensured by double translating the questionnaire (English-Russian-English), and a pilot survey of parents (N=112) was conducted. One hundred and nine parents of neurotypical children in 19 Russian cities were interviewed. 2. Semi-structured interviews with parents of children with ASD (N=40). We performed a standardization procedure in which the responses of the participants were converted into scores for each subscale by calculating the average score. Results and discussion. The survey showed a set of problems in the accessibility of social and medical care, education, and safety concerns that were significantly lower compared to the results of the survey of parents of neurotypical children. Comparison of the survey data with the results of parent interviews revealed detailed experiences of daily life for families with children with ASD. There were significant differences in seeking medical care: 82.5% of parents with neurotypical children are satisfied with the medical care they receive, while for parents of children with ASD, this figure is much lower - 64.3%. Slightly more than half are satisfied with home, work, school and neighborhood safety (42.9% satisfied, 9.8% completely satisfied). The proportion of parents of neurotypical children who are completely satisfied with safety is 28.4% and 42.2% who are satisfied. Most parents support inclusive or integrative education (they could choose more than one answer). 72.3% considered the most effective education for children with autism in classes with children without disabilities, a little more than half (54.5%) supported inclusive education. They also consider education in special classes in general schools to be effective. 8.9% of parents support home schooling. Conclusion. The findings reveal dangerous trends in the marginalization of families with children with ASD compared to families with neurotypical children. The solution to the problems of social integration must consider the indicators of these inequalities, both in terms of the quality of life of both the child and his/her immediate family.