Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders
Highlights
► This study examined factors associated with parental stress and satisfaction during the diagnosis of children with ASD in 102 parents of 2–17 years old children. ► Duration of diagnostic period, number of professionals consulted, relationship with professional(s), perceived helpfulness of information and autism severity were investigated. ► Professional perspectives on diagnosis were also obtained. ► Parents from higher educational backgrounds raised concerns about their child at an earlier age. ► Higher parental stress was associated with more professionals consulted and lower perceived collaboration with professionals. ► Higher parental satisfaction was associated with higher perceived collaboration with professionals, higher perceived helpfulness of received information, lower ASD severity, and lower parental stress.
Introduction
Early identification and diagnosis of Autism Spectrum Disorders (ASD) in young children has received considerable research and clinical attention in recent years (Matson et al., 2007, Shattuck and Grosse, 2007, Volkmar et al., 2009). Yet, ASD diagnosis often involves complex and heterogeneous presentations which require thorough investigations by various health professionals (Selfe, 2002), while concerns about misdiagnosis and labeling often deter many professionals from diagnosing ASD in young children (Nissenbaum, Tollefson, & Reese, 2002). Recently published national clinical guidelines (i.e. Filipek et al., 2000, SIGN, 2007) aim to guide clinicians in the diagnostic process. A thorough diagnostic assessment should consist of integration of detailed developmental history-taking with a caregiver interview, findings from clinical observations and assessments of the child in more than one setting (clinic, home, nursery/school) by a multi-disciplinary team (Bruey, 2004, Jordan, 2001).
The process of obtaining a diagnosis of ASD has often been described as stressful and unsatisfactory for caregivers (i.e. Mansell & Morris, 2004). Delays in obtaining the diagnosis (Daley, 2004, Howlin and Asgharian, 1999, Howlin and Moore, 1997, Siklos and Kerns, 2007, Wiggins et al., 2006, Young et al., 2003), communication between caregiver and professionals (Osbourne & Reed, 2008), number of professionals involved (Goin-Kochel, Mackintosh, & Myers, 2006) and the amount of support and information provided during and immediately after diagnosis (Osbourne & Reed, 2008) have been studied in relation to understanding parents’ experiences of the process of the ASD diagnosis.
One consistent negative experience reported by caregivers is the long delay between first raising concerns and receiving a formal diagnosis (Howlin and Asgharian, 1999, Howlin and Moore, 1997, Siklos and Kerns, 2007, Wiggins et al., 2006, Young et al., 2003). In a landmark UK study of 1200 parents, children with ASD were diagnosed on average at 6 years old, despite parental identification of symptoms at 18–24 months (Howlin & Moore, 1997); parents who waited longer for the diagnosis were also less satisfied with the process. Such delays are often associated with parental uncertainty, helplessness and anxiety (Bruey, 2004, Midence and O’Neill, 1999, Schall, 2000) with parents reporting “not knowing” and “being in a desperate race against time to help their children” as the most difficult aspects of the process (Cohen, 2006, Midence and O’Neill, 1999). Thus, a delay in obtaining a diagnosis, which may hamper efforts at providing appropriate early intervention, often leads to increased parental dissatisfaction and stress.
Parents often consult a number of professionals before a diagnosis of ASD is finally confirmed (Goin-Kochel et al., 2006). Siklos and Kerns (2007) found that the process of obtaining a diagnosis of ASD could involve a waiting time of up to 3 years and consultation with an average of 4.5 professionals. Goin-Kochel et al. (2006) found that parents were less satisfied when they had to consult more professionals to obtain a diagnosis.
Parents are often more satisfied with the diagnostic process when they were given opportunities to ask questions, when professionals took into account parents’ early concerns, when useful information was provided by the professionals and when the professionals engaged with the families in a supportive and empathic manner (Brogan & Knussen, 2003). In focus group discussions, parents revealed their wishes for information sheets to be provided upon receiving a diagnosis (Osbourne & Reed, 2008). They also commented on the interpersonal skills of professionals, requesting for them to be open-minded, honest and understanding (Osbourne & Reed, 2008). Thus, a good relationship with professionals may contribute to making the diagnostic process a more respectful and satisfactory experience. Conversely, parents who have a positive diagnostic experience are then more likely to assume more effective roles in partnership with the professionals (O’Brien & Daggett, 2006).
Studies examining parental adjustment well after a diagnosis has been have shown that higher ASD symptom severity is positively associated with increased levels of parenting stress (e.g. Osbourne & Reed, 2008). On the other hand, the only study which examined parental stress specifically relating to the diagnostic process (Siklos & Kerns, 2007) found that parents of ASD children with more severe communication deficits reported lower stress in relation to the process of diagnosis. The authors proposed that greater severity of ASD symptoms were clear indications of significant problems and the process of diagnosis was more of a starting point to accessing services rather than a complete surprise.
Our understanding of the factors that affect parental experiences of the diagnostic process is still emerging. Little is known about the variables that influence parental stress and satisfaction in settings where diagnosing children with ASD is still relatively new and less well established. In addition, most of the studies reviewed above have typically investigated these factors independently. To our knowledge, few studies have attempted to understand the shared contribution of a number of variables associated with parental stress and satisfaction during the diagnostic process. The first diagnosis of autism in Singapore was not made until 1987 (Bernard-Opitz, Kwook, & Sapuan, 2001), although increasingly more diagnostic and educational services are being developed for children with ASD and their families in Singapore in the last 10–15 years and considerable achievements have been made (Balakrishnan, 2005). The prevalence of ASD in Asia has also been consistently rising (Sun & Allison, 2010). With this in mind, the current study aimed to assess parental experiences of the process of diagnosis of ASD in the last 10 years and to explore possible factors associated with parental stress and satisfaction, namely duration of the diagnostic process and associated delays, number of professionals consulted, perceived helpfulness of information received and perceived collaborative relationship with professionals. In addition, we examined professionals’ reports of current ways of working to ascertain if these follow recently published clinical practice guidelines (AMS-MOH, 2010, Filipek et al., 2000) and are acceptable to parents.
Section snippets
Participants
One hundred and two parents of children with a diagnosis of autism, ASD, Asperger's syndrome or Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS) obtained by qualified health professionals in Singapore after 2001 and 17 professionals from public and private organisations providing ASD diagnostic services participated in the study.
The diagnostic process
Table 3 presents important time points and characteristics of the diagnostic process. On average, parents received an ASD diagnosis for their children approximately a year after they first raised concerns. At their first contact with professionals, 43 (42.2%) children were given a formal ASD diagnosis. Fifty-three (52.0%) parents were referred to other professionals for further assessment, three were told that there were no problems, four not to worry, three to return if the problem persisted
Discussion
This study aimed to understand the experience of ASD diagnosis from the perspectives of parents of children with ASD and to investigate aspects of the diagnostic process that are related to parental stress and satisfaction. Parental education level and monthly household income were found to be associated with earlier age of recognition of problems, but not with duration of diagnostic process or number of professionals consulted. The fewer the professionals consulted and the better the perceived
Acknowledgments
We would like to thank all parents and professionals for their participation, time and valuable contributions. We would also like to extend our gratitude to the following organizations and support groups for their kind assistance and participation:
Aquafins, Association for People with Special Needs (APSN Chaoyang and Katong), Autism Association Singapore (Clementi and Simei), Autism Partnership Pte Ltd., Autism Recovery Network, AWWA School and Early Intervention Centres, Children's Partnership
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