Soočanje staršev z regresijo že usvojenih veščin ali vedenja njihovega otroka z avtizmom

Strnad, Rebeka (author), Žgur, Erna (mentor)

V magistrskem delu smo raziskali, kakšne so osebne izkušnje staršev otrok z avtizmom, ki so nazadovali z izgubo že usvojenih veščin ali vedenja – kakšne so bile okoliščine nazadovanja, kako so se s tem soočali starši, kakšnih oblik pomoči in podpore ter strategij so se posluževali, ali so ob tem prešli faze žalovanja ter kdo od strokovnih delavcev jim je nudil pomoč, v kakšni obliki in koliko časa. V teoretičnem delu smo opredelili avtizem, predstavili glavne znake avtizma, teorije, ki ga razlagajo ter vzgojno-izobraževalne programe, kamor se usmerja otroke z avtizmom. Opredelili smo nazadovanje pri otrocih z avtizmom ter predstavili ključne domače ter tuje aktualne ugotovitve o značilnostih, možnih vzrokih za nazadovanje ter načinih soočanja s tem. Predstavili smo tudi vidik staršev otrok z avtizmom, proces žalovanja in soočanja z diagnozo ter težkimi situacijami. Opisane so različne oblike pomoči in podpore ter strategije, ki se jih starši otrok z avtizmom ob nazadovanju že usvojenih veščin ali vedenja njihovega otroka z avtizmom lahko poslužujejo, da se lažje soočijo s situacijo. Predstavljene so tudi nevladne organizacije, ki v Sloveniji delujejo na področju avtizma in na katere se lahko starši otrok z avtizmom obrnejo po pomoč. V empiričnem delu smo na podlagi prebrane domače in tuje literature pripravili vprašanja za tri starše otrok z avtizmom, ki so v življenju nazadovali vsaj enkrat. Opravljeni so bili polstrukturirani intervjuji, nato pa smo s pomočjo kvalitativne analize ter z uporabo metode odprtega kodiranja dobljene podatke tudi obdelali. Rezultate smo predstavili opisno. Ugotovili smo, da so vsi otroci po normalnem zgodnjem razvoju nazadovali okoli drugega leta starosti, kar je bilo povod za diagnozo avtizma, eden pa je nazadoval še enkrat, ko je bil star 18 let. Potrdili smo prisotnost nekaterih dejavnikov, ki naj bi povečali možnost za nazadovanje (pomembno nižje intelektualne sposobnosti, izrazitejši avtistični znaki, pridružena psihiatrična motnja), drugih pa ne (epilepsija, mitohondrijske in metabolne motnje). Nazadovali so na različnih področjih (jezikovno, socialno, mešano, vedenjsko nazadovanje). Ob nazadovanju so vsi starši prešli faze žalovanja, ki se niso bistveno razlikovale od tistih ob postavitvi diagnoze. Vzrokov starši večinoma niso iskali, ko pa so jih, so nazadovanje pripisali cepljenju ali pridruženim psihiatričnim motnjam. Strokovnjaki so vzroke videli v nastopu avtističnih znakov ali nastopu znakov obsesivno-kompulzivne motnje, nekateri tudi v vedenju staršev, bolezni, psihičnih dejavnikov, a so te možnosti tudi ovrgli. V obdobju, ko so otroci nazadovali, so starši potrebovali več pomoči in podpore, ki so jo iskali v društvih in podpornih skupinah, pri domačih ter drugih starših s podobnimi izkušnjami. Iskali so čim več informacij, preoblikovali so tudi svoja pričakovanja do otroka in cilje v življenju ter se, po začetnem zanikanju težav, osredotočili na otrokova močna področja. Pogrešali so pomoč strokovnih delavcev, ki jo je bilo, po njihovem mnenju, premalo, zato so bili s pomočjo nezadovoljni. Kljub temu so izpostavili nekaj svetlih izjem v sistemu, ki so jim nudile ustrezno in zadostno pomoč, s katero so bili zelo zadovoljni. Želeli bi si, da bi jim strokovni delavci nudili več realnih in konkretnih informacij ter usmeritev, da bi med seboj delovali bolj povezano, da bi jih bolj poslušali in upoštevali ter poskušali razumeti.

• Language: Slovenian
• Keywords: avtizem
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Year: 2021
• PID: 20.500.12556/RUL-128563
• COBISS.SI-ID: 70637827
• Publication date in RUL: 16.08.2021

Secondary language

• Language: English
• Title: Parents' approach to the regression of their autistic child's previously acquired skills or behaviour

Abstract

Our master’s thesis researched the personal experiences of parents with children who have autism and have regressed with their already acquired knowledge of skills or behavior – what were the circumstances of the regression? How did the parents face them? Which types of assistance did they make use of? Did they go through stages of grief? Which professionals reached out to help them? How? For how long? In the theoretical section of the thesis we defined the concepts of autism, presented the main signs of autism, theories that define it and educational establishments which take care and provide for children with autism. We defined regression shown in children with autism and introduced key domestic and foreign relevant scientific findings, probable causes for regression and ways of coping with them. We presented the parents’ point of view, the coping and grieving process related to the diagnosis and hardships situations. Described below are different types of help, support and strategies useful to parents with children who experience regression of already established knowledge of skills or behavior. In the empirical part of the thesis we prepared questions for parents of children with autism, who have regressed at least once. We conducted semi-structured interviews interpreted with qualitative research and open coding data processing. The results are depicted through summarization. Our findings show that all the observed children had a normal early development but started showing regression around their second year which is what led to a diagnosis – autism. One of the children regressed again at the age of 18. We affirmed there were some restrictive factors which can increase the possibility of regression (lower intellectual abilities, distinct autistic marks, joined psychiatric disorder) and refuted others (epilepsy, mitochondrial and metabolic dysfunction). Regressions were evident in several fields (linguistics, social, mixed, behavioral regression). While experiencing their child regressing all parents went through phases of grief which did not differentiate the ones they went through when the diagnoses were set. Mostly the parents did not search for the causes and when they did they attributed them to vaccinations and joint mental illnesses. Some experts saw grounds for regression in the autistic development or the introduction of obsessive-compulsive disorder signs, some experts also attributed them to parental behavior, disease and mental factors, but later refuted these options. In the period of regression, the parents sought more help and support with societies and support groups as well as other parents with similar experience. They sought information but also redefined their expectations towards their child as well as life goals and after the initial denial focused on the child’s strengths. The parents expressed a lack of professional help from experts in the field and were therefore dissatisfied. They did however express some highlights in the system which did manage to offer suitable and sufficient help that did satisfied their needs. They would have wished for the experts to offer them more realistic and concrete information as well as guidelines so they could act relatively. They wished to be heard, considered and understood.

• Keywords: autism