Parents’ experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia?

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Highlights

  • It took 12 months and eight appointments on average to obtain an autism diagnosis.

  • Passive responses (e.g., advising ‘wait and see’) predicted longer waiting times.

  • Single parents reported that it took longer to receive a confirmed diagnosis.

  • Parents of older children reported a longer time between raising concern and diagnosis.

Abstract

Background

The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support. Few studies have examined the association between potentially modifiable characteristics of the service system and timelier diagnosis.

Methods

An online survey was conducted to examine parental experiences of service pathways to an autism diagnosis for their child, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis. Participants included 107 parents of children with autism who were diagnosed by 7 years of age and a smaller subgroup of 29 parents who were diagnosed after 7 years of age.

Results

Parents of younger children reported that, on average, it took approximately 12 months and 8 professional consultations to receive a confirmed diagnosis for their child. Parents of older children, as well as those who reported they were a sole caregiver, or were advised by professionals to ‘wait and see’, reported more time between first raising concerns and diagnosis.

Conclusions

The findings reiterate the importance of proactive professional responses to parental concerns. They also highlight the need for standardised screening and assessment and professional development and training to build capacity in the sector to deliver timely and accurate autism diagnoses.

Introduction

Autism spectrum disorder (ASD) is an umbrella term used to describe a group of neurodevelopmental conditions characterised by difficulties in social-communication and interaction as well as repetitive or restricted interests and behaviours, which are first evident from early childhood (American Psychiatric Association, 2013). The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support services. Intensive early intervention leads to improvements in language, cognition and adaptive functioning for many children on the autism spectrum (Dawson et al., 2010; Perry, Blacklock, & Dunn Geier, 2013; Rogers & Vismara, 2008), which may translate into substantial economic benefits for families and communities (Cidav et al., 2017). While support at any age is beneficial, younger children may benefit most from early intervention due to early brain plasticity (Dawson et al., 2012). Indeed, the age that a child commences early intervention, cognitive ability pre-treatment, and the amount of intervention received have been identified as important indicators of developmental gains (Clark, Vinen, Barbaro, & Dissanayake, 2018; Flanagan, Perry, & Freeman, 2012; Perry et al., 2013; Smith, Klorman, & Mruzek, 2015; Vivanti, Dissanayake, & The Victorian ASELCC Team, 2016).

Early behavioural markers of ASD, such as inconsistent or reduced: eye contact, orientation to name, use of gestures, social smiling, response to joint attention and imitation are evident from the first year of life (Barbaro & Dissanayake, 2009; Barbaro & Dissanayake, 2010). Many children can be reliably diagnosed from 24 months of age, and research suggests these early diagnoses are stable into later childhood for 85–90 % of cases (Barbaro & Dissanayake, 2016; Chawarska, Klin, Paul, & Volkmar, 2007; Clark, Barbaro, & Dissanayake, 2016; Guthrie, Swineford, Nottke, & Wetherby, 2012). Although feasible, the diagnosis of ASD in young children can be complex, due to marked variability in presentation and rapid development during the first years of life (Steiner, Goldsmith, Snow, & Chawarska, 2012). The diagnostic criteria acknowledges that for some children difficulties may not emerge until a later age, when social demands exceed capabilities (American Psychiatric Association, 2013). Factors which may contribute to a child being diagnosed with ASD at a later age also include the type and severity of symptoms the child presents with, their developmental level, variability in symptom onset, fewer parental concerns and lower socio-economic status, together with the availability of diagnostic services and lengthy waiting lists to access these (Daniels & Mandell, 2014). Indeed an international literature review found that the average age at diagnosis reported across studies ranged from 38 to 120 months (Daniels & Mandell, 2014), highlighting the variability in families’ diagnostic experiences. Similarly in Australia, the average age of diagnosis of autism is reported to be approximately 4 years of age in children younger than 7 (Bent, Dissanayake, & Barbaro, 2015) and 6 years in children aged up to 12 years (May & Williams, 2018).

Large surveys in the United Kingdom (UK) and United States (US) have investigated parents’ experiences of the service pathway to an autism diagnosis, finding general dissatisfaction and long wait times throughout the pathway to diagnosis (Crane, Chester, Goddard, Henry, & Hill, 2016; Howlin & Asgharian, 1999; Howlin & Moore, 1997; Oswald, Haworth, Mackenzie, & Willis, 2015; Zuckerman, Lindly, & Sinche, 2015). Howlin and Moore (1997) examined the diagnostic experiences of 1295 parents enrolled with autism societies in the UK, over 20 years ago; the average age of diagnosis of children in this sample was more than 6 years, despite parents reporting first seeking help an average of 3 years and 9 months earlier. Crane et al. (2016) sought to replicate and extend on this study by conducting an updated survey of 1047 parents. The average age of diagnosis of children in this sample was 7.5 years, an average of 3.5 years after parents first reported seeking help from a health professional (mostly commonly general practitioners and health visitors). These findings suggest that there has been no substantial reduction in age of diagnosis in the UK since Howlin and Moore conducted their original survey. Indeed, a slight increase in the average age of diagnosis is evident over time, which may be attributable to the inclusion of more participants with Asperger’s, some of whom may present with more subtle symptoms and experience a longer diagnostic delay (Crane et al., 2016). Across both studies, greater parental satisfaction with the diagnostic process was associated with less time taken to receive a diagnosis (Crane et al., 2016; Howlin & Moore, 1997).

A recent New Zealand study of 516 parents (Eggleston, Thabrew, Frampton, Eggleston, & Hennig, 2019) found that higher satisfaction with the diagnostic process was predicted by satisfaction with the diagnostic report, lower parent stress, less time spent on waiting lists, multidisciplinary assessment and absence of a concurrent ADHD diagnosis. Parents in this sample reported first becoming concerned about their child’s development at a mean child age of 3.2 years, seeking professional advice (most frequently from General Practitioners, Paediatricians and Well Child Health providers) when the child was 3.5 years, and a mean age of diagnosis of 6.6 years. A relatively small proportion of parents in this sample (3.8 %) were advised “to return if problems did not improve”, while 13.8 % were advised “not to worry” or “they’ll grow out of it”, which is concerning given that these families went on to receive a diagnosis.

Lengthy diagnostic delays were also reported in the 2011 Survey of Pathways to Diagnosis and Treatment, conducted by the Centers for Disease Control and Prevention in the US. This sample included 4032 parents of children with special health care needs aged 6–17 years (n = 1420 parents of children with autism). Parents of children on the autism spectrum reported becoming concerned about their child’s development earlier than children with other developmental conditions; yet they received a diagnosis for their child at a significantly later age (ASD: M = 62.8 months; Other: M = 55.4 months). These parents were more likely to report that health care providers responded to their concerns in a reassuring or passive way (e.g., saying ‘nothing was wrong’ or that their child would ‘grow out of it’), and these responses were associated with longer diagnostic delays (Oswald et al., 2015; Zuckerman et al., 2015). However, proactive responses to parents’ concerns (e.g., referring to a specialist, conducting a developmental assessment) were associated with a more timely diagnosis (Zuckerman et al., 2015). Conducting a developmental or behavioural assessment, administering a screening tool, regular attendance at well-child health checks, and having to consult fewer health professionals have also been associated with relatively earlier diagnoses (Daniels & Mandell, 2013; Goin-Kochel & Myers, 2004).

No known studies have investigated parents’ experiences of the service pathway to an autism diagnosis in Australia and there is not one established pathway to care, with prominent state and provider-based differences. Parents may raise concerns with a primary health care professional (e.g., general practitioner or maternal and child health nurse), who may then refer to a paediatrician, families can also present directly to a paediatrician. Paediatricians can make a diagnosis and/or refer for further assessment to relevant allied health services (e.g., speech pathologist, occupational therapist, psychologist) or a multi-disciplinary assessment team (e.g., the Child and Adolescent Mental Health Service). It may also be the case that an education professional raises concerns with a parent, who may then seek further advice from a general practitioner or paediatrician.

Several reports have examined practitioners’ perceptions of current diagnostic practices in Australia. The findings suggest that substantial variability exists, which may influence families’ experiences of diagnosis by increasing uncertainty and impacting equitable access to post-diagnostic support. The use of standardised assessment tools in combination with clinical judgement can be an essential component of ensuring accurate and efficient diagnosis, particularly when a diagnostic decision is not clear. Indeed, the recently released National Guideline for the Assessment and Diagnosis of ASD in Australia (Whitehouse, Evans, Eapen, & Wray, 2018) recommends that information relevant to a diagnostic evaluation and assessment of functioning be collected in a structured way, and include standardised measures as appropriate. However, only 47 % of 173 health professionals reported using a standardised behavioural measure (Taylor et al., 2016). Lengthy waiting lists to access initial Paediatrician appointments, as well as allied health and specialist assessment services have also been reported in Australia (Randall et al., 2016; Ward, Sullivan, & Gilmore, 2016). Approximately one-third of Paediatricians reported that they made a diagnosis without input from allied health professionals, and that waiting times to access assessments was the primary reason for not considering this information (Randall et al., 2016).

The findings to date highlight the need for ongoing research investigating the service pathway to an autism diagnosis in Australia, and barriers to a timely diagnosis. While a relatively large body of research has investigated factors associated with the age of diagnosis of ASD in recent years, few studies have identified modifiable characteristics associated with the service system (such as professional behaviour and responses to parent concerns). Furthermore, the majority of research in this area has been conducted in the UK and US, and further research is needed to ensure generalisability of these findings across samples and service settings. Therefore, the aims in this study were to (1) describe parents’ service experiences of the pathway to an autism diagnosis in Australia, and (2) identify child, family, and service level characteristics that predict the age and timeliness of an ASD diagnosis.

Section snippets

Participants

Parents and caregivers of children diagnosed with an ASD (since January 2008) living in Australia were invited to participate in the study. This period was selected to limit the impact of recall bias, and changes in the service environment prior to 2008 (when an autism-specific early intervention funding package was introduced in Australia, which provided up to $12,000 to children with a documented diagnosis of ASD who were under 7 years of age). Parents and caregivers were recruited through an

First professional consultation

Parents’ of younger children reported that they first sought professional advice when their child was an average of 29 months of age (M = 29.39, SD = 16.48). Parents most commonly reported first raising concerns with a general practitioner (30 %), paediatrician (27 %), or maternal and child health nurse (22 %). The most frequently reported professional responses were to refer to another professional (54 %), to acknowledge parents’ concerns (49 %), to advise ‘not to worry’ or that there was no

Discussion

In this study, we aimed to describe parents’ experiences of the service pathway to an autism diagnosis in Australia, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis. To our knowledge, this is the first study to examine parents’ experiences of autism diagnosis in Australia and few international studies to date investigating factors associated with age of diagnosis have identified modifiable characteristics associated with the

Funding

This research was funded by the La Trobe University School of Psychology and Public Health, and the first author was supported by a Postgraduate Research Scholarship while undertaking this research project.

CRediT authorship contribution statement

Catherine A. Bent: Conceptualization, Methodology, Formal analysis, Writing - original draft. Josephine Barbaro: Conceptualization, Methodology, Writing - review & editing, Supervision. Cheryl Dissanayake: Conceptualization, Methodology, Writing - review & editing, Supervision.

Acknowledgements

We would like to acknowledge the parents and caregivers who participated in this study and generously shared their experiences.

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