Thesis

29 Perspectives of preventive care physicians on early detection of autism spectrum disorder 2 Autism spectrum disorders (ASD) affect about 1% of the population and are associated with lifelong impairments in functioning, substantial family burden, increased mortality and high medical costs (Buescher et al., 2014; Elsabbagh et al., 2012). Over the last years, the importance of early detection and access to early intervention of ASD is widely recognized (French & Kennedy, 2018). Due to the dynamic and plastic nature of the brain, early interventions can alter the development in children with ASD. Early detection and intervention can increase social communication outcomes and can reduce comorbid problems, negative impact on families and lifetime costs to the individual, family and society (Dawson et al., 2012; Fuller and Kaiser, 2019; Horlin et al., 2014). Despite these benefits, significant delays exist in access to screening, diagnosis and healthcare services for young children with ASD (BishopFitzpatrick & Kind, 2017). Research has established that developmental abnormalities associated with ASD become evident in some children as early as twelve months (Jones et al., 2014) and that a reliable ASD diagnosis can be made before the age of two (Guthrie et al., 2013). Despite increasing awareness of the importance of early detection, in the Netherlands, the average age children with ASD are diagnosed is around five years (Begeer et al., 2017) and thus receiving access to appropriate intervention later than preferred. In the Netherlands, about 15 years ago, a successful program known as the ‘DIANE project’ was implemented in order to improve early detection of ASD. In this program, physicians and nurses at well-baby clinics and members of special infant-toddler development teams were trained to a) recognize early signs of autism and b) use a specially designed referral protocol existing of a two-phase screening approach for ASD which included a screening questionnaire, the CoSoS (Communication and Social development Signs, previously known as ESAT; Dietz et al., 2006) after concerns were raised during routine developmental screening. The strategies of the ‘DIANE project’ mainly led to an improvement of early detection of children with severe ASD (Oosterling et al., 2010). However, eight years after the program ended, effects in early detection were not maintained in clinical practice (Pijl et al., 2017) and highlights the importance to continue studying improvement strategies for early detection of infants and toddlers at risk for ASD. In order to improve early detection of ASD, a Dutch guideline was developed for use within preventive care (van Berckelaer-Onnes et al., 2015). In the Netherlands, all infants and toddlers are systematically observed at well-baby clinics during thirteen visits between 0-4 years (program varies slightly per well-baby clinic). Well-baby clinics are a form of preventive healthcare where physicians and nurses have regular contact with young children and their parents, mostly for routine vaccinations, medical and developmental screening. Preventive care physicians (PCPs) have an important surveillance role in the Dutch healthcare system and can therefore play a critical part in early detection, as well as guiding children to early interventions. The Dutch ASD guideline provides PCPs action-oriented advice in early

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