Autism Spectrum Disorder and family relations

Poremećaj iz spektra autizma (PSA) obilježavaju odstupanja u socijalnoj komunikaciji i interakciji, te atipičnosti u obilježjima općeg ponašanja i interesa (Cepanec, Šimleša i Stošić, 2015). Rođenje djeteta s PSA utječe na sve članove obitelji. Svaki član obitelji reagira na sebi svojstven način, a pored takvih pojedinačnih reakcija, reagirat će i obitelj kao cjelina (Cvitković, Žic Ralić i Wagner Jakab, 2013). Roditelji djece s autizmom nisu suočeni samo sa izazovima koje obično doživljavaju roditelji djece tipičnog razvoja (TR). Istraživanja su pokazala da su roditelji djece s PSA posebno zabrinuti za budućnost svoje djece (Holmes, Kirby, Strassberg i Himle, 2018). Važnu ulogu u životu osobe s PSA imaju i sestre i braća TR, koji vrlo često postaju zaštitnici i primarni njegovatelji sestre/brata s PSA, kada roditelji zbog lošeg zdravstvenog stanja ili starosti, više ne mogu brinuti za svoje dijete (Orsmond i Fulford, 2018). Neke studije pokazuju negativna iskustva sestara/braće osobe s PSA uslijed agresivnih ponašanja (Petalas, Hastings, Nash, Dowey i Reilly, 2009), zbog kojih su često sestre/braća pokazivali trajne simptome anksioznosti (Angell, Meaden i Stoner, 2012). Suprotno tome, druga istraživanja pokazala su pozitivne učinke života sa sestrom/bratom s PSA, kao primjerice razvoj pozitivnog self-koncepta, napredne vještine brige i empatije, te ranije sazrijevanje (Angell i sur., 2012), te ponos postignućem sestre ili brata s PSA (Petalas i sur., 2009). Ovaj rad temelji se na dvije značajne teorije koje prikazuju životni ciklus obitelji, te pomoću kojih možemo bolje razumjeti utjecaj PSA na obiteljske odnose. Teorija obiteljskog sustava (engl. The Family Sistem Theory) objašnjava cikličan način djelovanja pojedinca u i/ili izvan obiteljskog sustava, pri čemu svako djelovanje pojedinca, uzrokuje reakciju obiteljskog sustava (Minuchin, 1985). Teorija povezanih života (engl. The Linked Lives Theory) naglašava generacijsku dimenziju vremena u prepoznavanju da je život pojedinca (uključujući i pojedince s PSA) ugrađen u živote drugih članova njegove obitelji, uključujući one iz drugih generacija i obrnuto (Gilligan, Karraker i Jasper, 2018). Cilj ovoga rada jest detaljnije proučiti područje obiteljskih odnosa, posebno naglašavajući odnos djeteta s PSA i njegovih roditelja, kao i odnos djeteta s PSA sa sestrama/braćom TR. Ovaj rad nudi pregled obiteljskih odnosa u različitim periodima života koji omogućava bolji uvid u životni ciklus obiteljskog sustava. Ovaj rad također sadrži kako same osobe s PSA percipiraju podršku sestre/brata TR.Autism spectrum disorder (ASD) is characterized by deviations in social communication and interaction, and atypicalities in the characteristics of general behavior and interests (Cepanec, Šimleša and Stošić, 2015). The birth of a child with ASD affects all family members. Each family member reacts in their own way, and in addition to such individual reactions, the family as a whole will react (Cvitković, Žic Ralić and Wagner Jakab, 2013). Parents of children with autism are not only faced with the challenges common to parents of typical developing (TD) children. Research has shown that parents of children with ASD are particularly concerned about the future of their children (Holmes, Kirby, Strassberg, & Himle, 2018). TD sisters and brothers also play an important role in the life of a person with ASD, who very often become protectors and primary caregivers of their sister or brother with ASD, when parents can no longer take care of their child due to poor health or age (Orsmond and Fulford, 2018). Some studies show negative sibling experiences of a person with ASD due to aggressive behaviors (Petalas, Hastings, Nash, Dowey, & Reilly, 2009), which often led siblings to show persistent symptoms of anxiety (Angell, Meaden, & Stoner, 2012). In contrast, other research has shown positive effects of living with a sister or brother with ASD, such as developing a positive selfconcept, advanced caring and empathy skills, and earlier maturation (Angell et al., 2012), as well as pride for achievements of a sister of brother with ASD (Petalas et al., 2009). This paper is based on two significant theories that depict the life cycle of the family, and with which we can better understand the impact of ASD on family relations. The Family System Theory explains the cyclical mode of action of an individual in/or outside the family system, where each action of an individual member causes a reaction of the family system (Minuchin, 1985). The Linked Lives Theory emphasizes the generational dimension of time in recognizing that the life of an individual (including individuals with ASD) is embedded in the lives of other members of his family, including those of other generations and vice versa (Gilligan, Karraker, and Jasper, 2018). The aim of this paper is to study the area of family relations in more detail, especially emphasizing the relationship of the child with ASD and his parents, as well as the relationship of the child with ASD and his TD siblings. This paper offers an overview of family relationships in different periods of life that provides a better insight into the life cycle of the family system. This paper also contains how individuals with ASD themselves perceive the care and support of their TD sister or brother