Spremembe življenjskih vzorcev družine z otrokom z avtizmom : magistrsko delo

Gostenčnik, Janja (author), Mali, Jana (mentor)

V magistrskem delu je bil glavni cilj raziskati življenjski svet družine, ki ima otroka z avtizmom in kako so se skozi leta spreminjali njihovi življenjski vzorci. Najprej sem predstavila nekatere pojme, kot so motnje avtističnega spektra, oblike motenj avtističnega spektra, socialna izključenost, otrokov glas in zagovorništvo otrok. Nadaljevala sem z opredelitvijo položaja otrok z avtizmom v Sloveniji, socialno delo z družino otroka z avtizmom in oblike pomoči, ki so otrokom in družinam na voljo. Naloga zajema skupino žensk, ki živijo na območju Koroške regije, starih od 30 do 56 let in imajo otroka z motnjo avtističnega spektra. V raziskavi sem se usmerila na življenjski svet družine z otrokom z motnjo avtističnega spektra. Ena izmed glavnih ugotovitev je, da so starši preveč obremenjeni s službo, otrokom z MAS in družino ter da nimajo dovolj znanja o avtizmu in ne dovolj brezplačnih terapij, ki bi otroku in družini olajšale življenje. Zaradi skrbi za otroka je potrebnega veliko prilagajanja, zato lahko ta vzorec pripelje do izgube socialne mreže, preobremenjenosti, izgorevanja ipd. Predlog, ki bi staršem olajšal življenje, bi bila uvedba brezplačnih terapij, dostopnih v lokalnem okolju, redni spremljevalec otroka, ki je lahko tudi prostovoljec, v prihodnosti pa osebni asistent. Pripomoglo bi tudi boljše sprejemanje okolice, kar bi dosegli z večjih ozaveščanjem ljudi o motnjah avtističnega spektra.

• Language: Slovenian
• Keywords: motnje avtističnega spektra (MAS), socialno delo, družina, socialna izključenost, spremembe
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: FSD - Faculty of Social Work
• Place of publishing: Ljubljana
• Publisher: [J. Gostenčnik]
• Year: 2020
• PID: 20.500.12556/RUL-124406
• COBISS.SI-ID: 51356419
• Publication date in RUL: 20.01.2021

Secondary language

• Language: English
• Title: Changes in life patterns of a family with a child with autism

Abstract

In my master's thesis the mail guidance was to explore the life of a family with a child with autism, and how their life patterns have changed over the years. Firstly I explained some concepts such as autism spectrum disorders, forms of autism spectrum disorders, social exclusion, a child's voice and their advocacy. I continued to define the position of children with autism in Slovenia, social work with the family of a child with autism and the forms of assistance that are available to children and their families. The thesis covers a group of women in the Carinthia region aged between 30 to 56 and have a child with autism spectrum disorder. In my research, I focused on the family's life with a child with autism spectrum disorder. One of the main findings is that parents are overburdened with work, their children with ASD and the family, and that they do not have enough knowledge and enough free therapies to make their and their children's lives easier. Caring for a child with autism requires a lot of adjustments, so this pattern can lead to the loss of the social network, overburdening, burnouts, etc. A proposal that would make life easier for the parent would be the introduction of free therapies available in the local environment, a regular companion of the child who can also be a volunteer and a personal assistant in the future. It would also help them to be accepted better in their surroundings, which could be achieved by raising people's awareness about autism spectrum disorders.

• Keywords: Autism spectrum disorder (ASD), social work, family, socialn exclusion, changes