62 Chapter 3 3b. Waiting lists Next, parents were often confronted with long waiting lists, both for behavioral experts connected to daycare facilities and intakes at specialized mental healthcare centers. According to parents, waiting lists caused unnecessary delays and feelings of annoyance and impatience (“being sent from pillar to post”) and prolonged suffering due to worries and insecurities of parents. 3c. Fragmentation of care Parents felt that the healthcare system is divided into “isolated little islands” where, for example: a) a general practitioner or preventive care physician refers the child and its family, b) a psychologist and/or psychiatrist is involved during the intake process c) one or more other professional(s) provide(s) the diagnosis, d) sometimes another professional offers therapy and treatment, etcetera, e) another healthcare organization is involved in the family for proving care to a sibling, f) a professional from the municipality is involved etcetera. Due to this fragmentation, within and between healthcare organizations, parents found it difficult to find the right person at the right time. This fragmentation, as mentioned by parents, causes unnecessary delays and prolonged periods of stress for the child and its family. Parents wished for a (lifelong) case manager: someone who keeps an overview of all the different parties involved in the care of the child at risk of ASD and supports parents in navigating the healthcare system. Enhancing communication and collaboration between all parties would, for an example, be a job for the proposed case manager. Parents wished for this case manager to also provide emotional support for parents. Furthermore, parents mentioned the importance of a closer collaboration between first line healthcare and specialized mental healthcare. As an example, two parents recalled their positive experience with a child psychiatrist offering consultation at the general practitioner’s office, providing a quick referral to the specialized mental healthcare. Lastly, parents mentioned that the availability and quality amongst care providers can differ a lot and is often highly depending on the family’s residential area. Thus, parents stated the need for quality checks on (ASD) healthcare providers, due to this variety in quality and availability.
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