64 Chapter 3 Table 2. Continued 1. Knowledge & Expertise 3b Waiting lists ‘Everybody says: ‘let’s wait, maybe things will improve in time’. Then follows a waitlist: we have to wait six months until someone is available. Then, another waitlist, and before you know it a full year has passed.’ – Participant 1 ‘I called them [specialized healthcare] and - maybe I don’t have enough patience and I don’t know how the systems works - but I called them and she said: you have the know, we have to screen the file first, that takes time.’ Yes, but how long does it have to take? For a mother, it takes very, very long.’ – Participant 9 3c. Fragmentation of care ‘We have had meetings with ten or twelve people. We, two parents, the rest of them all therapists and doctors.’ – Participant 8 ‘City X, I hear has very good care. Then they jokingly say: “you should have moved to city X’ – Participant 3 ‘Much depends on the muncipality, where you live.’ – Participant 10 Discussion This mixed-method study investigated the experiences of parents regarding the first steps (before diagnosis) in the process of getting help when they themselves and/or their professional signaled developmental problems and/or suspicions of autism spectrum disorder (ASD). From parents’ perspective, barriers in the early identification of young children with ASD, as well as potential improvements were studied. During the first phase of the study, an online survey was completed by 45 parents. During the second phase, an additional focus group was hosted with ten parents. Generally (as becomes apparent from questionnaire data), findings seem to indicate that this group of parents experience more severe concerns regarding ASD and their child’s development than first line healthcare workers (preventive care physicians and general practitioners), and they expressed to be fairly satisfied with the early identification process. Parental initial concerns include a variety of worries. Additionally (as discussed in the focus group), parents revealed several barriers in the process of getting access to appropriate healthcare and suggested improvement strategies in the early identification ASD. These barriers and strategies can be divided into three domains: “Knowledge & Expertise”, “Attention to Parental Needs” and “System & Organization”. Findings will be discussed below.
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