63 Parental experiences with early identification and care 3 Table 2. Themes and categories representing barriers, accompanied by illustrative quotes. 1. Knowledge & Expertise ‘What I would like to specify is that there is not enough knowledge at the general practitioners and at the well-baby clinics regarding ASD signals and young children.’ - Participant 6 ‘First they referred us to a child psychologist. We had an intake there and three days later, they called us. They couldn’t begin anything with such a young child, showing this kind of behavior. So, they couldn’t help us.’ - Participant 5 ‘If the healthcare professionals just would notice what early signals are…’- Participant 1 2. Attention to parental needs 2a. Acknowledgement of parental concerns ‘When my child was 1.5 years old, I recognized the signs again [older sib already diagnosed with ASD]. They didn’t have concerns in preschool but still consulted a behavioral psychologist . She did not recognize the red flags either, nor the general practitioner, nor the preventive care professional at the well-baby clinic. Then I thought: it must be me, I am projecting things’ – Participant 6 ‘Well, they literally see you as an overprotective mother. Or in my case, someone who brings her work home and project on her own child. Yes, I’ve heard it all.’– Participant 5 2b. Risk of social isolation, prejudice and stigma. ‘They [family and friends] often told me “you spoil him too much, you are always carrying him” and I would think: yes but if I don’t he will not stop crying.’ – Participant 2 ‘We do not have social lives. (…) And people move on because ‘there are always “issues” with us.’ – Participant 8 3. System & Organization 3a. Inflexibility of the system ‘We always had good contact with the staff members at preschool. They alwas said; “there is something special about [Name]”, but they always looked at what[Name] needed. If I hear other’s stories, I realize I have been lucky. That we had a preschool that always acted according to [Name]’s needs. If he for example needed one-on-one guidance, they always offered it.’ – Participant 4 ‘We persued a diagnosis since, otherwise, we wouldn’t get any mony from the muncipality to pay for care. They were born premature and that wasn’t enough to meet criteria. You are being pushed into the direction [of diagnostic assessment] just because you have to.’ – Participant 8
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