Family resilience of families of children with autism disorders

Družine otrok z avtističnimi motnjami se zaradi narave same motnje, diagnostičnih postopkov in sodelovanja z različnimi strokovnjaki ter institucijami soočajo s paleto čustev, spremembami v družinski dinamiki, utrujenostjo in stigmo. Izzivi se pri prehodu posameznika iz otroštva v adolescenco še dodatno spremenijo, kar poleg pričakovanih sprememb povzroči nove težave, tako za posameznika kot njegovo družino. Sklop stresorjev, s katerimi se srečujejo te družine, ima tako v različnih obdobjih življenja različno močan vpliv. Kako uspešno se družina sooča s stresom oz. krizo, preučuje teorija družinske rezilientnosti, ki se osredotoča predvsem na proces prilagajanja družine na spremembe. Z raziskavo smo dobili vpogled v posamezna področja družinske rezilientnosti družin z otroki in mladnostniki z avtističnimi motnjami. Na ta način smo želeli identificirati področja, kjer bi bilo te družine potrebno še dodatno podpreti. Raziskati smo želeli tudi, ali se družinska rezilientnost razlikuje glede na starost otrok, vrsto vzgojno izobraževalnega programa, sopojavnost motenj in izobrazbo staršev. V raziskavi je sodelovalo 38 dvostarševskih družin, ki so za diagnozo avtističnih motenj vedele vsaj 18 mesecev, njihovi otroci oz. mladostniki pa so bili v času raziskave stari med 6 in 18 let. Za namen raziskave smo prilagodili vprašalnik Family Resilience Assessment Scale avtorice Sixbey (2005). Rezultati kažejo, da družine najvišjo rezilientnost izkazujejo na področju osmišljanja negativnih dogodkov, ki mu sledita področje komunikacije in reševanja problemov ter področje ohranjanja pozitivnega pogleda. Rahlo nižjo rezilientnost smo prepoznali na področju družinske povezanosti ter na področju uporabe socialnih in ekonomskih virov, medtem ko se je za področje z najnižjo rezilientnostjo izkazalo področje duhovnosti, pri katerem so družine tudi najbolj heterogene. Ugotovili smo tudi, da starost otroka oz. mladostnika z avtisitčnimi motnjami, vrsta vzgojno izobraževalnega programa, izobrazba staršev in dejstvo ali so avtistične motnje ene izmed večih motenj ali se pojavljajo izolirano, ne vplivajo na samooceno rezilientnosti družin. Na podlagi pridobljenih rezultatov smo oblikovali smernice za strokovne delavce, ki se pri svojem delu srečujejo z družinami otrok in mladostnikov z avtističnimi motnjami.The nature of disorder, related diagnostic procedures and engagement of different experts expose families with children with autism spectrum disorders to a wide array of emotions, changes in family dynamics, exhaustion, and stigma. As an individual evolves from a child to adolescent, there are additional, new challenges for an individual and his/her family. A number of stressors that these families face, impact them differently at different stages of life. Family resilience theory studies how successfully a family copes with stress or family crisis, primary aim of the studies is the process of adapting to changes. The research allowed us to determine the current state of family resilience for families with children and adolescents with autism spectrum disorders with respect to the specifics of each autistic disorder. The results of the research should help us identify specific areas that may require additional support for these families. Another important aim of research was to determine if family resilience depends on the age of children, type of education programme, co-occurrence of disorders and the educational attainment of parents. Research included 38 two-parent families, who had known about the autism spectrum disorder diagnosis at least 17 months before, the age of children ranged between 6 and 18. The survey Family Resilience Assessment Scale (Sixbey, 2005), was adapted to serve the purpose of our research. The results prove that the area of highest family resilience is making sense of negative events, followed by the area of communication and problem-solving, and the area of maintaining positive attitude. The domains of family connectedness and use of social and economic sources demonstrated slightly lower family resilience, the lowest result was established for the area of spirituality, which is also the area in which families displayed the highest level of heterogeneity. It was also established that families’ selfassessment of the resilience was not influenced by the age of a child or adolescent with autistic spectrum disorder, type of education programme, co-occurrence of disorders nor the fact whether autistic disorder is a major or isolated occurrence in family life. The obtained results served as a base for devising guidelines for socioeducational staff, who deal with families with children and adolescents with autistic spectrum disorder