Family experiences raising children with autism spectrum disorder in Lithuania

Objectives. This thesis represents a unique collaboration with the parents of children with Autism Spectrum Disorder in Lithuania. The focus and direction of this study was to examine how psychological experiences (parental stress levels) and socio-cultural factors (professional’s services and societal attitudes) interact. It used parental experiences to capture more elaborate picture of stress while raising child with ASD. The studies sought to gain a better understanding of the influence that socio-cultural factors have on parents more specifically to measure whether stress is linked to the experiences of stigmatizing behaviour. Methods. Combinations of quantitative and qualitative methodologies were used to provide a deeper and broader understanding of the research questions. Parenting Stress Index (short form) questionnaire provided psychometric estimates of parenting stress. Semi-structured interviews and focus group discussions (FGD) were conducted and explored further stress phenomena and parental experiences in Lithuania. FGD with professionals informed about their services, and attitudes on ASD children. While interviews with siblings informed about family experiences from the point of a TD child. Grounded Theory and Thematic Analysis were used to analyse the data. Finally, I used knowledge, attitudes, and practice scale to understand the existing tendencies towards ASD among the general public. Results. Overall, parents reported a significant increase in parental stress (M=102.6, SD=19.5) with a positive correlation of experience of stigma (r=.68) and negative correlations with relationship satisfaction (r=–.30). The parental stress model has showed that ASD characteristics were the most influential factor, followed by support received and experiences of stigma (AIC 2768.2 p<.0001). From qualitative data, Time emerged as a crucial factor for parental stress. Lack of support from professionals and guidance after diagnosis were additional factors. FGD showed agreement between medical professionals and parents on future improvements with regard to support after diagnosis. All participants reported on high levels of stigmatisation in Lithuania and reflected on the detrimental effect it has on families. Siblings’ interviews informed about the high levels of responsibility and isolation experienced by growing up with an ASD sibling. Finally, it was found that Lithuanians are aware of ASD but have poor knowledge about the disorder. There was a gap between positive attitudes about people with ASD and motivation to assist such people. Discussion. The findings showed that Lithuanians experience high levels of parental stress while raising child with ASD. It is unrealistic to eliminate all the stress, but it is important to develop coping strategies to protect against the negative effects of parental stress. Also, it has been shown that cultural and external factors contribute to the experiences of parental stress in Lithuanian population. Both professionals and parents agreed on the need to provide support after the diagnosis and to address the socio-cultural issues when thinking about families with ASD children. The siblings’ experiences added valuable information on family dynamics with ASD children through their own personal experiences and highlighted the risk factors of favouritism, isolation, and overcompensation. Finally, the lack of knowledge and pervasiveness of misconceptions about ASD strengthened the case about prevalence of stigma towards ASD in Lithuania. The limitations and suggestions for future research are discussed for each chapter individually.