1 15 General introduction concerns regarding their child’s development due to the apprehension of being dismissed by a professional (Johnson et al., 2020; Locke et al., 2020). From parents’ point of view, the aforementioned might be reasons to not pursue follow-up steps (for example diagnostic assessment) which contributes to the delay of early detection and intervention. From a professional and organizational perspective, previous studies show that limited knowledge of ASD in infants and toddlers, limited use of screening instruments and limited capacity of suitable intervention options are main components in late detection (Pinto-Martin et al., 2005). Within young children, developmental concerns can still be diverse and seen as falling within the broad variation of “average” development, making it difficult to determine whether development is “delayed” or “deviant.” For this reason, preventive care professionals often opt for a “wait and see” approach. This approach is sometimes fitting, but often not. As is elsewhere in the world, the process of early detection and access to early intervention in the Netherlands can be complex and lengthy. In 2018, when the current SCOPE project (as presented in this thesis) started, there was limited knowledge about how the aforementioned obstacles related to the Dutch context. Therefore, one of the objectives of this thesis was, through qualitative research, to identify and gain a deeper understanding on how these barriers relate to the Dutch healthcare system, with the ultimate aim of proposing strategies for improvement (see Chapter 2 and Chapter 3). Previous research of early detection and screening in the Netherlands Over the course of the past few decades, significant research in the Netherlands has been conducted with the aim to improve early detection and intervention for infants and toddlers with (possible) ASD. The SCOPE (Social Communication Program supported by E-health) project in Nijmegen builds upon the knowledge, expertise, and findings of previous research, specifically the SOSO study (initiated in the late 1990’s, Utrecht) and the DIANE project (initiated in 2003, Nijmegen). The SOSO project and the DIANE-project brought the clinical field pivotal insights into how early detection and screening of infants and toddlers at elevated likelihood for ASD could be improved. Both projects led to the development and implementation of important innovative strategies, such as the development of a Dutch screening guideline and the founding of the Dutch interdisciplinary expertise network called ‘Stichting Autisme Jonge Kind’. First, we offer a summary of both research projects and their impact below. Finally, we discuss how the current SCOPE project as described in this thesis relates to the previous work. 1. SOSO Study The SOSO study brought the scientific and clinical field a screening instrument to detect ASD at an early age (14 months), under the name: ESAT (Early Screening of Autistic Traits Questionnaire, Dietz et al. 2006). Nowadays, the ESAT is known as the CoSoS
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