Abstract:The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-relat… Show more
“…Most of the available studies have been conducted in the United States, Canada, and other Englishspeaking countries. Although we found a small number of studies, concerning mostly children, conducted in Western Europe [20] and Southeastern Europe [21], to our knowledge, there is no study published in an international journal on services for adolescents and adults with ASD in Central and Eastern Europe. Therefore, little is known from previous studies about the patterns of service use and needs that can be generalized to other countries across various sociocultural, economic, and systemic factors.…”
Background: Despite a growing number of adolescents and adults diagnosed with autism spectrum disorder (ASD), little is known about service needs and barriers to services in this population. Existing research shows that youth with ASD are more underserved as they approach final years of their high school education and that adequate services for individuals with ASD after transition to adulthood are even scarcer. However, few studies have directly compared differences in service availability between adolescents and adults with ASD, and even fewer studies are published on service use outside Anglo-Saxon countries. The purpose of the present study was to examine service access, perceived barriers, and unmet needs, as reported by parents of adolescents and young adults with ASD in Poland. Methods: The study used a subsample of parents of young people with ASD (aged 12-38 years; N = 311) from the Polish Autism Surveya survey covering different areas of functioning of people with ASD in Poland, based on a convenience sample. Responding parents were recruited via different service providers, social media, and press, and completed a survey using a web platform or a paper-and-pencil questionnaire. Results: As expected, adults used services less often than adolescents, with 80.1% of adolescents and 61.1% of adults with ASD using services in the previous 12 months. Mental health services were among the most used and the most needed services, followed by educational services, while needs for sensory/motor services remained largely unmet. Young people with a coexisting intellectual disability used more services than those without it. Nongovernmental organizations, private clinics, and schools were the most common service providers. Parents indicated that most of young people with ASD had unmet service needs for services (93.5%) and faced barriers to access them (82.7%). Low-income families and those living outside large cities were at the highest risk of facing barriers to service access. Conclusions: The results confirm still a thin body of evidence from different countries suggesting that adolescents and adults with ASD were both largely underserved populations. Policy-makers should address economic, regional, and age-related inequities in access to services for individuals with ASD.
“…Most of the available studies have been conducted in the United States, Canada, and other Englishspeaking countries. Although we found a small number of studies, concerning mostly children, conducted in Western Europe [20] and Southeastern Europe [21], to our knowledge, there is no study published in an international journal on services for adolescents and adults with ASD in Central and Eastern Europe. Therefore, little is known from previous studies about the patterns of service use and needs that can be generalized to other countries across various sociocultural, economic, and systemic factors.…”
Background: Despite a growing number of adolescents and adults diagnosed with autism spectrum disorder (ASD), little is known about service needs and barriers to services in this population. Existing research shows that youth with ASD are more underserved as they approach final years of their high school education and that adequate services for individuals with ASD after transition to adulthood are even scarcer. However, few studies have directly compared differences in service availability between adolescents and adults with ASD, and even fewer studies are published on service use outside Anglo-Saxon countries. The purpose of the present study was to examine service access, perceived barriers, and unmet needs, as reported by parents of adolescents and young adults with ASD in Poland. Methods: The study used a subsample of parents of young people with ASD (aged 12-38 years; N = 311) from the Polish Autism Surveya survey covering different areas of functioning of people with ASD in Poland, based on a convenience sample. Responding parents were recruited via different service providers, social media, and press, and completed a survey using a web platform or a paper-and-pencil questionnaire. Results: As expected, adults used services less often than adolescents, with 80.1% of adolescents and 61.1% of adults with ASD using services in the previous 12 months. Mental health services were among the most used and the most needed services, followed by educational services, while needs for sensory/motor services remained largely unmet. Young people with a coexisting intellectual disability used more services than those without it. Nongovernmental organizations, private clinics, and schools were the most common service providers. Parents indicated that most of young people with ASD had unmet service needs for services (93.5%) and faced barriers to access them (82.7%). Low-income families and those living outside large cities were at the highest risk of facing barriers to service access. Conclusions: The results confirm still a thin body of evidence from different countries suggesting that adolescents and adults with ASD were both largely underserved populations. Policy-makers should address economic, regional, and age-related inequities in access to services for individuals with ASD.
“…Affiliate stigma could lead the parents to react behaviorally by hiding their children's condition from others, withdrawing from social relations, or alienating themselves from the stigmatized individuals to avoid association [28,29]. There are a few studies that have reported a high level of affiliate stigma in the parents of children with ASD [27,[30][31][32][33]. Affiliate stigma is also found to negatively affect psychological well-being in these parents, leading to a reduced quality of life [24,27,30].…”
Children with autism spectrum disorder (ASD) are reported to participate less in everyday activities, and their parents face stigma on account of having a child with ASD, which they often internalize as affiliate stigma. Studies have examined the impact of affiliate stigma on parents’ psychological well-being and social behaviors, but little is known about how affiliate stigma impacts their children’s activity participation. This study aimed to investigate the relationship between parents’ affiliate stigma and activity participation of their children with ASD. Sixty-three parents of children with ASD (aged 2–6 years) were recruited. They completed questionnaires, which captured affiliate stigma, their child’s participation (frequency and involvement) in home, preschool, and community activities, and demographic characteristics. Results indicated that these parents had a moderate level of affiliate stigma, which did not correlate with the frequency of their children’s participation in activities. However, the parents’ affiliate stigma was found to have negative impacts on their children’s involvement in overall community participation and participation in one particular activity at home. The findings highlight the importance of destigmatization of parents of children with ASD in order to promote their children’s participation in community activities.
“…Croatian respondents, like families elsewhere (Daniels et al ., 2017), spoke of their experience of discriminatory behaviour and stigmatisation. In many cases, this was enacted through social exclusion, leading one parent to state that other people needed to understand that ‘autism is not a contagious disease, that that is not a reason you should separate your children from our children .…”
Section: Some Key Findings and Commentarymentioning
confidence: 99%
“…However, PE in autism is not accessible by all and is limited or unavailable in many regions, including south‐east Europe (Daniels et al ., 2017; Hansen et al ., 2017). A three‐year European Commission‐funded project, Equity and Social Inclusion through Positive Parenting (ESIPP), was established in 2015 to address this shortfall for families in Croatia, Cyprus and North Macedonia.…”
Section: Introduction: Parent Education In Autism and The Esipp Projectmentioning
Information and support for families of children on the autism spectrum is limited in south‐east Europe. A three‐year project, Equity and Social Inclusion Through Positive Parenting (ESIPP), was established to develop and provide parent education (PE) in autism for families in Croatia, Cyprus and North Macedonia. This paper presents findings from Croatia regarding family life and the impact of PE. Data were collected via pre‐ and post‐PE questionnaires and semi‐structured interviews. Participants discussed the impact of autism on family life, the difficulty of obtaining a diagnosis, the importance of family support (and varying experience of formal support), common experiences of stigma and social exclusion and concerns for the future. The value and benefit of PE is identified, and recognition of its impact within Croatia has ensured its ongoing provision.
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