154 Chapter 7 grounded theory revealed that most participants did not follow-up general surveillance with an ASD-specific screener, as recommended by the guideline. Six barriers in early detection were identified and categorized into personal, guideline-related, and external factors. Barriers included: 1) limited knowledge about ASD symptoms in infant-and toddlerhood, 2) professional attitude towards early detection, 3) challenges in discussing initial concerns with parents, 4) limited use of screening instruments, 5) perceptions regarding cultural and language differences and 6) constraints regarding availability of healthcare services. The results of this study highlight the importance of an integrative approach, with the need of 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. The study described in Chapter 3 details a two-stepped mixed-method design that focused on parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. As a first step, an online parental survey was held amongst 45 parents of children diagnosed with ASD at age six or younger (between 2016 and 2018). Parents were invited through this online survey to reflect back on their experiences during the period before the diagnosis was established. The second step included an additional, exploratory focus group (n=10) to gain more in-depth insight into parent’s experiences with the process of early detection and referral to appropriate care, as well as to identify barriers and potential improvement strategies for this process. Results of the online survey (n = 45) showed that, on average, initial concerns regarding the child’s development started at 22 months. Upon receiving an ASD diagnosis, children had an average age of 48 months, meaning an average gap of 26 months between first concerns and an ASD diagnosis. Initial concerns, as experienced by parents, are often not specifically about autism; in fact 62.2% of concerns are related to problem behaviors, and 44.4% are related to language development. Overall, parents reported that they had visited a wide range (0-6) of different healthcare professionals before receiving an ASD diagnosis for their child. On average, parents visited two or three different healthcare professionals (for example a speech therapist, physiotherapist, pediatrician, child psychologist) before their child received an ASD diagnosis. The additional focus group (n = 10) revealed multiple barriers and proposed strategies of improvement in three domains: 1) Knowledge and Expertise, 2) Attention to Parental Needs and 3) System and Organization. Furthermore, the two perspectives of preventive care physicians and parents are integrated and summarized in a diagram, presented in Chapter 3. The proposed diagram can be a useful tool that will help to better understand how difficulties in early identification of ASD relate to perspectives of parents, professionals and child characteristics. Additionally, new strategies that focus on improving family-centered care and shared-decision making should be developed, evaluated and, when evidence based, implemented.
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