Growing up and cohabitation with siblings with autism spectrum disorder

Magistrska naloga obravnava sorojence in njihovo doživljanje odraščanja in sobivanja z bratom ali s sestro z avtističnimi motnjami (AM) ter na kakšen način jih ta življenjska izkušnja oblikuje. V teoretičnem delu so najprej opredeljene AM, sledijo zgodovinski pregled raziskovanja avtizma, etiologija, terminologija, prevalenca AM in poglavitne značilnosti otrok z AM. V nadaljevanju so predstavljene nekatere značilnosti družinskega življenja z otrokom s posebnimi potrebami in s kakšnimi izzivi se soočajo družine otrok z AM. Poseben poudarek pa je namenjen raziskovanju izkušenj sorojencev otrok z AM, ker njihov vidik individualnega in družinskega konteksta pogosto ostane spregledan in nepojasnjen. S pregledom tuje in domače literature sem preučila značilnosti odnosov med brati in sestrami od zgodnjega otroštva do odraslosti, kateri dejavniki med skupnim odraščanjem vplivajo na sorojence otrok z AM in kakšne vrste raziskav o tem so bile izvedene. Zanimalo me je tudi, katere oblike pomoči in podpore za sorojence otrok z AM so se izkazale kot učinkovite. Namen empiričnega dela je bil raziskati in predstaviti aktualne teme sorojencev otrok z AM. Raziskava je bila izvedena s kvalitativnim raziskovalnim pristopom. Izvedla sem sedem intervjujev z različno starimi sorojenci otrok z AM. Zanimalo me je, na kakšen način doživljajo odnose s sestro ali z bratom z AM, kako vidijo svojo vlogo v medsebojnih interakcijah s sorojencem z AM in znotraj družinskega konteksta ter kako so izkušnje skupnega odraščanja in sobivanja vplivale nanje. Rezultati raziskave so pokazali, da na kvaliteto družinskega življenja vplivajo stopnja in intenzivnost izraženih AM, pridružene motnje in povezanost družine. Slednja je odvisna od uspešnega soočanja z vplivom AM in s stresom staršev. Odporna in povezana družina za sorojence predstavlja varovalni dejavnik, hkrati pa je zanje tudi ključni vir socialne podpore. Ugotovila sem, da sorojenci v družini prevzemajo raznovrstne in atipične vloge ter da med spoloma prihaja do razlik. Ker so sorojenke v primerjavi s sorojenci bolj vpete v družinsko življenje, opažajo več posledic vpliva AM na življenje družine, ki se odražajo v prilagoditvah, kot so dodatna skrb, nega, zagovorništvo, hitrejše odraščanje in prevzemanje odgovornosti zaradi razlikovalnega odzivanja in deljene pozornosti staršev.This master’s thesis discusses how siblings experience growing up and cohabiting with children with autism spectrum disorder (ASD) and what kind of impact these experiences have had on their lives. The theoretical part of the thesis provides the definition of ASD, historical overview of research about autism, aetiology, terminology, prevalence of ASD and main characteristics of children with ASD. Furthermore, I describe peculiarities in everyday lives of families with special needs children, challenges of families living with a child with ASD and focus on effects of ASD on siblings, since their perspectives are often overlooked. I studied the effects of ASD on sibling relationships from early childhood into adulthood, the factors that had an effect on siblings while growing up and what types of research already exist on the matter. I wanted to research which types of help and support have been found effective for siblings of children with ASD. The aim of the empirical part was to examine and present relevant themes emphasised by siblings of children with ASD. This study used the qualitative research approach. Interviews were conducted with seven siblings of children with ASD of different ages. The intention was to get information about how they experience their relationships with a brother or sister with ASD, what kind of roles they take on in their interpersonal relationships and in the family context and how growing up and cohabiting alongside ASD siblings affected them. The aforementioned analysis found that family quality of life is affected by severity of ASD, comorbidity and family connectedness. The latter is dependent on successfulness of overcoming the challenges of ASD and parental stress. A connected and resilient family presents a protective factor and key social support for the siblings. The results show that siblings of children with ASD take on diverse and atypical roles and also indicate differences between genders. Sisters are more integrated into family life in comparison to brothers and therefore reported more perceived effects of ASD on family life, for instance additional care, advocacy, faster maturing and assumption of responsibility due to differential treatment and divided attention of the parents