61 Parental experiences with early identification and care 3 them that there was “nothing wrong” with their child, instead of asking more questions in order to clarify parental concerns. However, marginalizing and dismissing concerns did not lead to parents feeling relieved. Instead, parents felt insecure, thinking: ‘if there is nothing wrong with my child, then there must be something wrong with me that I feel this way.’ Parents emphasized that it is of great importance that they feel heard when initially contacting preventive and primary professionals about their concerns. Now, parents sometimes experience that they are being dismissed as an overly concerned parent. Parents value a healthcare professional that supports the child and their family, is easily available and is willing to go the extra mile. 2b. Risk of social isolation and prejudice Many parents described a risk of social isolation: they had to start working part-time, or even resign entirely, because their child could not fully function or thrive when attended in daycare, by other family members (i.e., grandparents), or by babysitters. Some parents mentioned that they feel judged by their family, friends and healthcare professionals: as if their child’s divergent behavior is caused by their parenting style. These experiences cause parents to feel shame, guilt and frustration. Improvement strategies on how to target the risk of social isolation were not discussed amongst parents, since they almost all struggled with it. According to parents, an improvement strategy on how to reduce prejudice amongst first line healthcare workers was to increase their knowledge about ASD in young children, so that a better distinction can be made between child behavior, ASD symptoms and parenting styles. 3. System & Organization The third and last theme surfaced from the data was Systems & Organization, divided into: a) inflexibility of the system, b) waiting lists, c) fragmentation of care. 3a. Inflexibility of the system The majority of parents described various struggles due to the inflexibility of the (healthcare) system. Parents describe having to push and complain to their preventive care physician or general practitioner in order to get a referral to the specialized mental healthcare for their young child at risk of ASD. Additionally, parents experienced inflexibility of the system regarding daycare and schooling facilities. Parents mentioned that they were obligated to switch to a different daycare and/or schooling facility when their child did not “fit in”. Instead, parents wished that their child would have received additional and adequate guidance at regular daycare and schools. Parents stated the need for improved, customized care, since parents now felt that they were forced to conform and adapt to the healthcare system. Two parents during the focus group mentioned an opposite experience: they felt that their regular daycare was able to provide adequate guidance and support.
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