Support for the parents of the children with autistic spectrum disorders

Autizam, poremećaji autističnog spektra ili poremećaji iz spektra autizma (PSA) su skupina neuropsihijatrijskih poremećaja koje karakterizira specifično zaostajanje i otklon u socijalnom, komunikativnom i kognitivnom razvoju s tipičnim početkom u prvim godinama života. Dokazano je da se ranim prepoznavanjem te ciljanom ranom intervencijom značajno može poboljšati životni ishod osobe s autizmom. Roditelji djece s PSA su pod višom razinom stresa u odnosu na roditelje djece bez poteškoća u razvoju, ali i u odnosu na roditelje djece s poteškoćama u razvoju koje nisu povezane s PSA te im je stoga potrebna kontinuirana potpora društvene zajednice.Ovim istraživanjem se željelo utvrditi kakvo je stanje vezano uz socijalni status, dob kod postavljanja dijagnoze i početka intervencijskih programa, vrstama i izvorima financiranja korištenih intervencijskih programa, zadovoljstvom rezultatima habilitacije i rehabilitacije te razinom potpore koju dobivaju osobe i roditelji osoba s PSA koji su članovi Udruge Pogled od strane državnih institucija i udruga za pomoć osobama s PSA. Istraživanjem se nastojalo ustanoviti da li postoje retrospektivne razlike u navedenim analiziranim parametrima kod starije djece i osoba u odnosu na mlađu djecu s PSA.Ukupni rezultati istraživanja potvrđuju potrebu i opravdanost što ranije dijagnostike i intervencije kod djece s PSA. Provedeno istraživanje pokazuje retrospektivni napredak jer je utvrđeno da je kod djece mlađe od 14 godina ranije postavljena dijagnoza i ranije se počinjalo s intervencijskim programima u odnosu na djecu staru 14 i više godina.Potvrđeno je da su rezultati habilitacije i rehabilitacije bolji kod mlađe djece koja su prije uključena u intervencijske programe, te su njihovi roditelji imali bolju podršku koja je primarno bazirana na radu udruga za pomoć osobama s PSA te su stoga zadovoljniji podrškom Udruga, a manje zadovoljni podrškom institucija.Istraživanje pokazuje da podrška državnih institucija nije u skladu s percepcijom i očekivanjima roditelja osoba s PSA te da roditelji smatraju da je potreban bolji, sustavan i organizirani pristup državnih institucija i svih djelatnika koji su uključeni u podršku osobama s PSA.Autism or autism spectrum disorders (ASD) are group od neuropsychiatric disorders which are characterized with specific backwardeness and deviation in social, comunication and cognitive development with typical begining in first few years of age.It is proven that early recognition, diagnostic and early intervention can significantly improve life outcome of autistic person. Parents of the children with ASD are under higher level of stress compared to the parents of children without disabilities and also compared to the parents of children with developmental dissabilities not related with ASD. According to this, parents of the children with ASD need continous support of social community.Aim of this study was to find out, in the region of northwest Croatia, situation of the family social status, age of autistic person in the moment of diagnosis of ASD and at the begining of intervention, types and sources of financing of interventional programes, satisfaction of the parents with the results of rehabilitation, and satisfaction of the parents with the support from the government institutions and civil organisations which are dealing with ASD. Retrospective analysis was conducted with the purpose of finding out the differences in the analized parameters between older childrens and persons with ASD and younger children with ASD.The total results of study confirmes the requirement and justification of as early possible diagnosis and intervention in the children with ASD. Conducted study show retrospective improvement since it is proven that in the children younger than 14 years the ASD was diagnosed before and also intervention started earlier compared to the children older than 14 years.The study showed that the results of rehabilitation are better in the younger children which started earlier with interventional programes and their parents accepted better support which is primary provided from the civil organisations for the peoples with ASD. Due to this, parents showed higher level of satisfaction with support of civil organisation compared to the government institutions.This investigation showed that support of the official health service and government institutions does not correspond with the expectations and needs of the parents of the children with ASD. According to this, there is demand for systematic and organized approach of the government institutions and better education of the healthcare and other employees which are included into support for the persons with ASD