Service use, unmet needs, and barriers to services among adolescents and young adults with autism spectrum disorder in Poland

Abstract

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.

Parents’ experiences of accessing respite care for children with Autism Spectrum Disorder (ASD) at the acute and primary care interface: a systematic review

“…Eligibility criteria included parents of children with an ASD who had accessed respite care and offered their views and experiences of the process through qualitative enquiry. The focus on children was influenced by the potential of increasing needs for children with ASDs from childhood through to adolescence which can make them and their parents susceptible to physical and mental health crises because their specific needs are often unmet [26]. There is considerable evidence that the upbringing of a child with an ASD is complex and associated with an important change in family dynamics and family stress is higher in families raising a child with an ASD [4][5][6][7].…”

Paediatric to adult healthcare transition in resource-limited settings: a narrative review

“…19 In a Polish survey of young adults with autism spectrum disorder, high cost and unavailability were the most frequently reported barriers to services. 20 In Zambia, when the studied intervention did not show widespread impact on the cultural norms that lead to adolescent vulnerability, the authors hypothesised that one limitation to sustained programmatic success was the need for more tailored interventions based on individual and community needs. 16 Partnering with adolescents to identify their needs for system change can be a valuable strategy.…”

Autism in Adulthood: Clinical and Demographic Characteristics of a Cohort of Five Hundred Persons with Autism Analyzed by a Novel Multistep Network Model

“…Adolescents and adults with ASD are largely an underserved population. In a survey in Poland, the vast majority of parents of young PWA complained about the lack of assistance and support for PWA (93.5%) and the many difficulties in accessing the available services (82.7%) [6]. Indeed, low-income families and those living outside large cities have to deal more frequently with barriers to service access.…”

“…In this regard, stakeholders emphasize that supports should be individualized and focused on the changing aspects of the young adult's social and physical environment rather than on behavioral changes [12][13][14]. Thus, there is widespread consensus that policymakers should address economic, regional, and age-related inequities in access to services among PWA [6,15]. Furthermore, adult-oriented healthcare services should work directly with PWA and their support networks to facilitate successful engagement with services and enable adults to manage their mental health needs [16].…”