AUTISM AWARENESS MONTH: Life of Adults with Autism Spectrum Disorder

Many adults with autism spectrum disorder (ASD) live with their elderly parents who are unable to provide quality care. Considering the increase in the number of people with ASD, it is necessary to ensure a greater number of living communities, where these people would have 24-hour care and meaningful activities after the death of their parents. 

Author: Ivana Vranješ 

The need for deinstitutionalization, improvement of institutional and non-institutional lifelong care for adults with Autism Spectrum Disorder, and creation of conditions for their full acceptance into society was discussed at the Cultural and Information Center (KIC) on the panel  “Life of Adults with Autism Spectrum Disorder” Organized by the Association for Autism – Zagreb.

Igor Ružić, president of the Association for Autism Zagreb, recalled that in 2010 the Association founded two living communities for adults with ASD. Six people live in the adapted building of the district school in the town of Mostari in the municipality of Dubrava, and five people live in an apartment on preferential rent in the Zagreb settlement Sopnica – Jelkovec. By autumn, a third living community will be opened in the building of the old school in Gornji Vukšinac, where eight people will be housed, which is part of the project of the Association for Autism – Zagreb “Our Blue World – the establishment of our third living community of people from the autism spectrum”.

Ružić said that related associations and non-profit organizations should start such communities as well. However, 14 years after the establishment of the first living communities, the Association for Autism in Zagreb is still the only non-institutional provider of the most complicated social service, organized housing, in the Republic of Croatia.

Living communities are started thanks to the initiative of parents

Prof. Ph.D.Sc. Jasmina Frey – Škrinjar, a member of the expert service of the Association for Autism Zagreb, recalled that living communities started to open in Canada and the USA in the early 80s, which were initially intended for people with intellectual disabilities. As Frey – Škrinjar points out, institutions have failed in their mission and function, because they are organized to provide security to people with developmental disabilities, but isolating these people in institutions is not providing security at all.

In an ideal living community, five people with ASD should be cared for by two assistants on the same shift, stressed Prof. Ph.D. Frey – Škrinjar. Unfortunately, in the two living communities of the Association for Autism – Zagreb, there is only one assistant on shift who cannot meet all the needs of the people he cares for.

“People who want to be assistants in these communities must understand the nature of autism. What is common in people with autism are undesirable forms of behavior, and the point is that each person has their own individualized program that takes care of preventing or mitigating undesirable forms of behavior. The assistant must know what is the trigger of such behaviors,” said prof. Ph.D. Frey. She praised the living communities of the Association for Autism Zagreb, which serves as a good example for countries like Italy and Slovenia, pointing out that such communities are still being started thanks to the initiative of the parents themselves.

Photo: Facebook @KIC

Snježana Palić, mother of a 23-year-old boy with ASD and intellectual disabilities, shared her experiences with the system. Her son had auto aggression and was often hospitalized during puberty. As Snjezana said on the panel, her family’s experience with the system was bad, and she believes that if the system does not respond to needs, parents must do everything in their power to help and support children with autism spectrum disorders. She is satisfied that today her son is attending a half-day stay at the Association for Autism Zagreb, whose activities have influenced the reduction of auto-aggression. She emphasized that in the future she would like her son to be in a living community because it is the most humane way of life for a person with an autism spectrum disorder.

Kristina Karlović, head of the Organized Housing Program of the Association for Autism – Zagreb, described life in a living community, pointing out that people with autism participate in daily activities with the support and supervision of assistants, and have the right to make their own choices. Because of these activities, some people no longer show undesirable forms of behavior and aggression.

There is no routine in the community, for example getting out of bed at the same time, but it is individual, people independently choose and prepare food for their breakfast and participate in household chores. Some things that are generally done by people in their lives are also done individually. How each day will look depends on the users themselves,” said Karlović.

Cover photo: Juliana Perdomo

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