67 Parental experiences with early identification and care 3 causes unnecessary delays and prolonged periods of stress. The complex infrastructure of the healthcare system and the stress it causes has also been reported in previous studies in other countries (Boshoff et al., 2018; Crais et al., 2020; Crane et al., 2016), which illustrates the importance of a) parents receiving additional support in navigating the system and b) a closer collaboration in regional networks between healthcare professionals that contributes to a less fragmented system. Parents in the current study expressed the need for customized care centered around families. They also mentioned the necessity of a case manager who helps them navigate the healthcare system and provides emotional support. The importance of a central contact or case manager can be viewed as a clinical best estimate (Blijd-Hoogewys et al., 2017) and an essential piece in improving early identification of children with or at risk of ASD. The lack of support parents experience in navigating the system again illustrates their need for a more family-centered care approach in the early identification process of ASD. Combining parental and professional perspectives In this last section, results of the current study will be integrated with the preventive care physicians (PCPs) viewpoints on the same topic (Snijder et al., 2021). In our previous study, PCPs expressed their concerns about having limited knowledge about early ASD symptoms, professional attitude in general towards early detection, problems in discussing initial concerns with parents, limited use of screening instruments, problems derived from cultural differences, and constraints regarding availability of healthcare services. Barriers related to these topics have a great overlap with the viewpoints of parents in the current study, with the exception of ‘the limited use of screening instruments’ and ‘problems derived from cultural differences barriers’. The absence of the screening and cultural barriers can be explained by the fact that parents are often not aware of the existence of specific screening instruments and that the current sample existed of native Dutch speaking participants only. Based on the overlapping barriers, parents and PCPs seem to experience the same issues regarding early identification of ASD, albeit from a different point of view. Given both perspectives, there seem to be two main difficulties in the parent-PCP conversations when there are concerns of the child being at risk for ASD. The first is where parents feel that their concerns are not acknowledged by PCPs at well-baby clinics and that they are told to ‘wait-and-see.’ The second is where PCPs feel that parents find it difficult to recognize and accept that their child’s development might be divergent and PCPs therefore find it hard to discuss their suspicions of ASD and refer for diagnostic assessment. Amongst others, these two situations are visualized in Figure 2 as first presented by Oosterling and colleagues (2019). The green compartment in the figure represents children where both parents and PCPs express no concerns and the child will probably develop typically. The red compartment represents children about whom both parents and PCPs have concerns and strongly suspect ASD. These “red” children represent a group that will generally be referred
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