36 Chapter 2 Table 1. Continued Selective codes Axial codes Illustrative quotes 3b. Parental recognition and perspective on diagnosis and healthcare “I have noticed that parents aren’t really there yet. They find it incredible difficult. [To hear the word autism?] Yes. That is a real grieving process that they have to go through. You have to be patient.” – Participant 11 “I believe that parents think that their child is too young and that everything will be OK in time. It will be fine. A language delay is different, that is something you can discuss with parents. But I believe firmly that parents think: my child is too young [to have autism]” – Participant 5 4. Screening instruments 4a. Unfamiliarity with ASD specific screening tools “To be honest, I don’t use it that much. I am not to perform a diagnostic assessment. It is starting the referral process that is important and not if I say: your child may have autism.” – Participant 4 4b. Time constraints “We see 98-99% of the children. Of course, we can and identify them. We can follow them; we can do all that. But you have to be realistic and tell us that we get more time to do so. They ask us to do so many things, in the same amount of time. But in order to do them, we need to get more money, in order to give us more time.” – Participant 8 4c. Parental acceptance “When a parent has a request for help, a healthcare trajectory is easier to start. But when parents don’t have any questions, I believe that introducing a questionnaire like this [CoSoS] can be threatening.” – Participant 9 5. Cultural differences “And well, maybe when there are cultural differences, they [parents], don’t truthfully tell how things are going at home” – Participant 2. “In some cultures it is more appropriate that to tell the doctor that everything is going well. Parents only feel the need or freedom to ask questions when they are ready to leave with the doorknob in their hands, so to speak” – Participant 12
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