54 Chapter 3 The few recent studies that looked into parental experiences during the phase of early identification suggest that parents find it difficult to discuss their initial concerns due to their concerns being dismissed or professionals adapting a ‘wait and see’ approach, instead of validating parental concerns (Johnson et al., 2020; Locke et al, 2020). Other barriers experienced by parents during early identification were the lack of using ASD-specific screening tools by PCPs and a lack of knowledge regarding appearance of ASD in girls and underrepresented populations (Crais et al., 2020; Locke et al., 2020). These previous studies have all been conducted in the United States, where the American Academy of Pediatrics (AAP) guideline recommends universal screening (i.e., all children at 18 and 24 months are screened for ASD; American Academy of Pediatrics, 2020). However, less is known about parents’ perspectives with the early identification process in countries where another approach to screening is being followed (i.e., screening in high risk groups). The current study is one of few studies conducted outside of the US to take parents perspectives into account in a country where there is no universal screening for ASD (i.e., parents are likely to be the first ones to identify initial concerns). Therefore, the current study will explore parental perspectives with regard to the early identification of ASD in the Netherlands. The Dutch national guideline recommends that children should be specifically screened for ASD when one or more red flags for ASD are identified during general health surveillance at the well-baby clinic (van Berckelaer-Onnes et al., 2015). Well-baby clinics are a form of preventive healthcare where physicians and nurses have systematic contact with young children and their families during the first four years of life, mostly for routine vaccinations and developmental surveillance. In the current study, three specific questions will be addressed: 1) what were parents’ initial concerns regarding their child’s development and when were they expressed; 2) what barriers did parents experience in the early identification process of their child with ASD and 3) according to parents, which strategies are needed to improve early identification and access to healthcare of young children with ASD? This study is linked to a study of perspectives and experiences of preventive care physicians (as opposed to parents) regarding early identification of ASD, which covers the same research questions though from a different angle (Snijder et al., 2021). Hence, in the discussion section, results of the current study will be integrated with the PCPs viewpoints on the same topic, as investigated by a previous study of our group (Snijder et al., 2021). Methods Study design The current study engaged a two-stepped, mixed-method design. The first step involved an online survey (N=45) targeting the process from initial concerns to enrollment in specialized mental healthcare services for diagnosis and intervention. The second step consisted of
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