Odrastanje s bratom s poremećajem iz autističnog spektra: perspektiva braće i sestara

The relationship between siblings is often the longest lasting relationship within an individual’s life (Cicirelli, 1995). This relationship is especially important for individuals with developmental difficulties, since their siblings are usually those who undertake the role of caregivers, after the parents are no longer available to do so. However, recent research suggests that establishing a close relationship with a sibling diagnosed with autism spectrum disorder (ASD) may be considerably more challenging compared to siblings with other developmental difficulties (Tomeny et.al., 2017). Although the siblings of individuals diagnosed with ASD have received a certain amount of attention in the last decade worldwide, this area is still under-researched in Croatia, and is insufficiently addressed in interventions aimed at helping families with children diagnosed with ASD. The aim of this study was to explore the experiences of siblings living with a brother with ASD and their perceptions of the received and needed support. Six semi-structured interviews with adult siblings of individuals with ASD were conducted and analysed using thematic analysis. Generally, most of the interviewed individuals show a relatively high level of acceptance and affection towards their brother and feel that they have adapted to the brother’s condition. Although they mentioned some positive experiences and outcomes, they reported on many difficult aspects of growing up with their brother on the autism spectrum. None of them received any professional support during their growing up, and their opinions about the potential usefulness of programs targeted at siblings are divided.Odnos između braće i sestara često je najdugotrajniji međuljudski odnos (Cicirelli, 1995). Ovaj odnos posebno je značajan za osobe s teškoćama u razvoju, jer njihova braća i sestre često preuzimaju ulogu skrbnika nakon što roditelji više nisu u mogućnosti obnašati tu ulogu. Međutim, novija istraživanja impliciraju da uspostavljanje bliskog odnosa s bratom ili sestrom s poremećajem iz autističnog spektra može biti značajno složenije i teže u usporedbi s braćom i sestrama s drugim teškoćama u razvoju (Tomeny et al., 2017). Iako je problematika braće i sestara osoba s poremećajem iz autističnog spektra predmet istraživanja u svijetu, u Hrvatskoj je još uvijek nedovoljno istražena, naročito s obzirom na implikacije takvih istraživanja u intervencijama usmjerenim obiteljima djece s poremećajem iz autističnog spektra. Cilj je ovog rada istražiti iskustva braće i sestara brata s poremećajem iz autističnog spektra te njihovu percepciju dobivene i potrebne podrške. Kvalitativnom tematskom analizom analizirano je šest polustrukturiranih intervjua s odraslom braćom i sestrama osoba s poremećajem iz autističnog spektra. Većina intervjuiranih sudionika pokazala je relativno visoku razinu prihvaćanja i privrženosti prema svojoj braći, te su smatrali da su se prilagodili načinu funkcioniranja svoje braće. Unatoč nekim pozitivnim iskustvima i ishodima, uputili su na brojne izazovne i teške aspekte odrastanja s bratom s poremećajem iz autističnog spektra. Nijedan sudionik nije bio uključen u programe formalne podrške tijekom odrastanja, a njihova mišljenja o potencijalnoj koristi programa namijenjenih braći i sestrama su podijeljena