53 Parental experiences with early identification and care 3 Over the last years, early identification of autism spectrum disorder (ASD) has been deemed a priority since scientific evidence indicates that timely identification and access to appropriate interventions can alter child development and have a positive effect on individual, family, and society level (Dawson et al., 2012; Estes, 2015; Fuller & Kaiser, 2019; Green et al., 2010; Horlin et al., 2014; Pickles et al., 2014). In the early identification of ASD and thus the start of early interventions, both parents and primary/preventive care professionals play a pivotal role. Early identification of ASD generally starts with parents expressing worries about their child’s development during the first 2 years of life (Landa et al., 2008; Zwaigenbaum et al., 2015), and in some cases, they even express their concerns before their child’s first birthday. Unfortunately, large gaps varying between 1.5 to 3.5 years are common between initial concerns and receiving a clinical assessment and ASD diagnosis (Crais et al., 2020; Crane et al., 2016; Zuckerman et al., 2015). Due to this delay, parents often describe the process of obtaining an ASD diagnosis for their child as stressful (Crane et al., 2016). One the one hand, parents are (in some cases) the first ones to express concerns regarding the child’s development. On the other hand, there are cases where first line healthcare professionals such as preventive care physicians (PCPs) express initial concerns. For PCPs, it can be challenging to discuss these concerns with parents. For example, when parents do not seem worried about the possibility of their child having ASD, PCPs find it difficult to motivate parents for referral to more specialized facilities. Also, according to PCP’s, parents often try to avoid a diagnosis for their child at such a young age (Snijder et al., 2021). All in all, sometimes it appears to be difficult for parents and PCPs to understand and meet each other’s point of view. To reduce the delay and improve early identification of ASD it is highly important that the experiences and perspectives of parents in this process are well understood. Recognizing this importance, several studies have explored parents’ perspectives on the process of their child being diagnosed with ASD. Parents often report dissatisfaction with this process, due to the significant delay between initial concerns and the actual diagnosis (Chamak et al., 2011; Chao et al., 2017; Crane et al., 2016; Ho et al., 2014). Furthermore, these studies primarily focus on parental experiences and satisfaction with the diagnostic process itself and find that parents regularly experience the process as a stressful event, accompanied by feelings of shock, despair, depression, frustration, grief, worry and other negative emotions (Boshoff et al., 2018). Contributing to the stress of parents are an initial incorrect diagnose for their child, dissimilar advice, alternative explanations, a long and complex diagnostic process, limited support following diagnostic evaluation and frustrating paths to access appropriate healthcare services (Boshoff et al., 2018; Carlsson et al., 2016; Crais et al., 2020; Reed & Osborne, 2012). On the other hand, many parents eventually report a sense of relief and feeling validated by the diagnosis of their child (Boshoff et al., 2018). Although the experiences of parents regarding the diagnostic process of their child are relatively well documented, less is known about parental experiences during the first phase of early identification and discussing initial concerns with PCPs.
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