65 Parental experiences with early identification and care 3 Initial concerns Overall, parents reported first concerns about their child’s development at an average age of 22 months (with a range from 0-48 months), as is in line with previous research (Landa et al., 2008; Zwaigenbaum et al., 2015). The nature of these initial concerns are behavioral problems and delays in language development, social communication and motor development of their child. Parents reported an average gap of 26 months between first concerns and receiving an ASD diagnosis for their child, which is also in line with previous studies (gaps varying between 1.5 and 3.5 years) (Crais et al., 2020; Crane et al., 2016; Zuckerman et al., 2015). A possible explanation for the gap between initial concerns and an ASD diagnosis given in the current study is that first line healthcare workers experience less severe concerns than parents, as experienced by the latter. This was also apparent in the focus group data, where parents felt that their concerns were not being acknowledged by a healthcare professional. Especially mothers experienced more severe initial concerns, which can explain why a majority of mothers signed up for participating in the focus group. Notably, parents reported a wide range of satisfaction ratings with the process between initial concerns and receiving an ASD diagnosis for their child with the majority of parents being content. In comparison, Crane et al. (2016) reported a dissatisfaction amongst parents regarding the diagnostic process. This dissatisfaction was partly the result of a long delay of 3.5 years between first contacting a healthcare professional and receiving a formal ASD diagnosis. In the current sample, though smaller, this delay was, on average, one year less and might be an explanation for the higher satisfaction score. The ultimate goal of early identification is to improve and accelerate access to appropriate healthcare, not just speeding up the process of obtaining a diagnosis. However, a (working) diagnosis is often an important initial step for treatment (Blijd-Hoogewys et al., 2017; Gunnewijk & de Boer, 2021). Despite the relative positive satisfaction score, still plenty of improvement points arose amongst parents in the process of early identification which will be further discussed below. Barriers and improvement strategies regarding early identification of ASD The first barrier parents experienced in the early identification process of ASD was limited knowledge & expertise amongst first line healthcare professionals. Limited knowledge and expertise about ASD symptoms in infancy and toddlerhood in primary and preventive healthcare professionals is a commonly heard barrier, both mentioned by parents and professionals (Crais et al., 2020; Locke et al., 2020; Pinto-Martin et al., 2005; Snijder et al., 2021). Based on the frequency with which this barrier is reported, it can be considered a fundamental one to target in order to improve the early identification of ASD. To enhance the quality of care for children with ASD, the parents in the current sample strongly recommended additional training in the early behavioral symptoms of ASD to all primary
RkJQdWJsaXNoZXIy MjY0ODMw