157 Summary and general discussion 7 The results of these two studies highlight the importance of an integrative approach. For parents, this means a more family-centered care approach and shared decision making. Family-centered care emphasizes the importance of a beneficial partnership between families and health care professionals with shared decision making as an important principle (Kuo et al., 2012; Locke et al., 2020). To establish shared decision making, an active role for parents during the decision making process is strongly encouraged (Crais et al., 2020). Examples on how to promote an active role for parents are the use of parent reports and specific screeners, such as the M-CHAT-RF (Modified-Checklist for Autism in Toddlers Revised and Follow Up; Robins et al., 2014) or the CoSoS (Communication and Social development Signs, previously known as ESAT; Dietz et al., 2006) or to let parents observe their child during daily routines, in order to reach consensus about developmental concerns. A useful resource in this context is the website of “Stichting Autisme Jonge Kind” (www. autismejongekind.nl, as mentioned in the General Introduction chapter). In addition to providing easily accessible information about ASD in very young children, the website also offers the CoSoS questionnaire, which can be filled in online and/or downloaded. Both the website and the CoSoS is now available in Dutch, English, Turkish, and Arabic. For preventive care professionals, an integrative approach also means raising awareness of the benefits regarding early detection of ASD in preventive care, the need of continuous investment in easy and accessible training and active screening, and a closer collaboration between preventive care organizations and ASD experts in to boost access to appropriate and “easy” care. Furthermore, it is vital that the importance and benefits of early detection of ASD is brought to the attention of policymakers, governments and municipalities. The goal of early identification is to improve and accelerate access to appropriate healthcare, rather than merely speeding up the process of obtaining a diagnosis. However, a (working) diagnosis often serves as an important initial step for treatment (Blijd-Hoogewys et al., 2017; Gunnewijk & de Boer, 2021). Research suggests that it is possible to provide a relatively stable ASD diagnosis even at a very young age in many cases (Cleary et al., 2023; Guthrie et al., 2013; Lord et al., 2022; Zwaigenbaum et al., 2018). Yet, this raises the question of whether it is always necessary to confer such a diagnosis (or label) in clinical practice, given that young children are still in the early stages of development. Harstad et al. (2023) argue that it might be more appropriate to conceptualize ASD in young children as an “early ASD profile” that requires treatment and monitoring, rather than as a final diagnosis. In this thesis, we proposed that a (working) diagnosis is not an essential condition for initiating early intervention, by studying a new pre-emptive approach: the BEAR intervention. The focus of this thesis shifts from the urgency of early identification of ASD to emphasizing the need to address developmental concerns in very young children and their families in a timely manner.
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