Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder whose prevalence has increased dramatically over the past several decades (Baio et al., 2018). In alignment with this increase, research efforts have targeted effective assessment processes and related clinical activities to identify individuals with ASD. This paper will systematically review literature pertaining to an essential assessment-related consideration—the diagnostic assessment process and factors related to parental (dis)satisfaction with it. This topic has been explored by many researchers; however, the information arising from these studies has yet to be formally reviewed and synthesized for the benefit of clinicians and researchers. We begin by providing a brief description of ASD and an overview of common assessment approaches. We then report on literature pertaining to parental (dis)satisfaction with the assessment process and conclude with implications for clinical practice and suggestions for further research.

ASD Assessment

ASD is a pervasive (i.e., lifelong) neurodevelopmental disorder characterized by impairment of socio-communicative functioning in conjunction with restricted and/or repetitive patterns of behaviours, activities, or interests as described in the current Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychological Association [APA], 2013). Affected individuals experience qualitative impairment of social reciprocity, nonverbal communication, and peer relationships in addition to the demonstration of stereotyped or repetitive speech, motor movements, or use of objects, insistence on sameness or adherence to routines/rituals, fixated interests, and/or sensory interests or sensitivities. There is heterogeneity in phenotypic expression of these behavioural symptoms with varying severity and number of symptoms across individuals and, in some cases and domains, across time (Richler et al., 2010; Szatmari et al., 2002). As such, ASD is considered a ‘spectrum’ disorder with affected individuals demonstrating differential cognitive, language, social, and behavioural abilities (National Research Council, 2001).

As a result of the variability of symptom presentation, clinical assessment and diagnostic practices for ASD are complex. Assessment and diagnosis of ASD most often, though not always, occurs before elementary school (Centers for Disease Control and Prevention, 2007; Shea & Mesibov, 2009). Clinicians often strive to diagnose children as early as possible (i.e., at or before the age of 2), as formal assessment and earlier diagnosis result in enhanced prognosis (Fernell et al., 2013), enabling children to access interventions and supportive services at an earlier stage in development, thus improving developmental outcomes (Remington et al., 2007).

The diagnostic process typically begins when a parent or another individual (i.e., a relative, family friend, teacher) notices developmental or behavioural atypicalities in the child. Such atypicalities may include delayed or lack of imitation, sharing of attention and focus with social partners, orienting to socially important stimuli, and/or atypical language development (APA, 2013). These concerns may subsequently lead parents to seek out professional opinion on the nature of the behavioural differences, including a possible diagnosis (Mansell & Morris, 2004). Although there are many domains to be assessed (i.e., behavioural atypicalities, cognitive development, language development, sensory needs, gross and fine motor development) and approaches to assess each domain (Klin et al., 2005), best practice standards dictate a comprehensive and developmental assessment that ascertains an accurate picture of the child’s behaviours in relation to both normative and ipsative standards of development (Campbell et al., 2014; National Institute for Health and Care Excellence, 2011). In addition, the use of a multidisciplinary team (i.e., paediatricians, psychologists, speech-language pathologists, occupational therapists, etc.) is recommended so that professionals with specific yet unique training and experience can evaluate the child’s skills and abilities across a variety of domains (Volkmar et al., 2014). Parents then typically receive the results of the assessment upon its conclusion and seek support and services for their child.

Parental (Dis)Satisfaction with the ASD Assessment Process

Raising a child is a difficult endeavour that can be made more challenging when the child has a neurodevelopmental condition, such as ASD. Indeed, this additional struggle can enhance stress regarding parents’ skills and decisions (Huws et al., 2001). Researchers have indicated that parents of children with ASD experience substantial stress (Schieve et al., 2007), even more than parents of children with other developmental disorders (Sanders & Morgan, 1997). One potential source of this stress is the process of receiving a formal diagnosis for the child—a context that clinicians can influence directly by their professional approach, demeanour, and skill. A deeper understanding of the factors that can influence parents’ experience of the assessment process holds promise to inform clinical approaches to diagnosis and enhance care provided to families of a child with ASD. To that end, this systematic review (1) summarizes research on factors pertaining to satisfaction and/or dissatisfaction with an ASD assessment for their child, (2) provides considerations for enhancement of assessment processes based on this summary, and (3) outlines future potential research in this area.

Methods

A systematic review of the literature as of February 2019 was conducted following PRISMA guidelines (Moher et al., 2009). PRISMA guidelines highlight the process of using pre-determined search terms to identify articles through databases and/or other sources (e.g., journals; Moher et al., 2009). All duplicates are removed, and articles are screened for inclusion based on specific inclusion/exclusion criteria (Moher et al., 2009). At all stages, the number of articles found, excluded, and included for analysis is reported (Moher et al., 2009). In alignment with these guidelines, the Medline & Psych-Info databases were searched concurrently for the combination of the following keywords: (1) autism spectrum disorder or autism, (2) diagnosis, and (3) satisfaction. The search was limited to articles involving humans, written in English, and that were peer reviewed. The search yielded 50 identified articles whose abstracts were screened for inclusion in the review by both authors. The criteria for inclusion were as follows: (1) diagnosis of autism, ASD, Asperger’s disorder/syndrome, or pervasive developmental disorder—not otherwise specified was a primary topic and (2) parental satisfaction or dissatisfaction with the diagnostic assessment was described.

Seventeen articles met the inclusion criteria. To ensure full inclusion of relevant studies in this review, these articles were reviewed to identify cited articles on the topic of parental (dis)satisfaction with the ASD diagnostic process for consideration in the review. This search yielded an additional 3 articles. As well, five prominent journals (the Journal of Autism and Developmental Disorders, Autism, Focus on Autism and Other Developmental Disabilities, Research on Autism Spectrum Disorders, and Autism Research) dedicated to research on ASD were also searched for “satisfaction”. The abstracts of identified papers were screened; this search produced an additional 14 articles, for a total of 34. Upon closer inspection of these articles, it was determined that 8 did not align with the inclusion criteria outlined above (e.g., (dis)satisfaction was not directly addressed). If there was disagreement regarding article inclusion, the authors met to reach a consensus. The final count after this analysis of the articles yielded 26 articles (see Table 1) that met criteria to be included within this systematic review. Figure 1 outlines this process.

Table 1 Identified factors and their relation to satisfaction/dissatisfaction
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Fig. 1
figure 1

Flow chart diagram illustrating the identification and selection of articles. This diagram is a minorly adapted version of the PRISMA flow diagram (Moher, Liberati, Tetzlaff, Altman, & the PRISMA Group, 2009)

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Data Extraction

Data extraction was completed independently by each author who then met to discuss findings and reach consensus. Extraction categories included (1) factors related to satisfaction and (2) factors related to dissatisfaction. Following this, the first author (A. M.) grouped extracted data into factors related to (1) satisfaction within pre-assessment, assessment, diagnostic disclosure, and post-assessment, and (2) dissatisfaction within pre-assessment, assessment, diagnostic disclosure, and post-assessment. The second author (S. G.) extracted data from articles pertaining to (1) article type (e.g., quantitative), (2) sample size, (3) mean age of sample, (4) sample demographics, (5) time from diagnosis to satisfaction assessment, (6) diagnostic professionals and environment, and (7) measurement method. Tables 1 and 2 outline this process.

Table 2 Identified factors and their relation to satisfaction/dissatisfaction
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Article Characteristics

Articles came from various journals including Autism (8); Child: Care, Health and Development (2); Journal of Autism and Developmental Disorders (2); and Research in Developmental Disabilities (2). Published years ranged from 1994 to 2019. From the articles that reported time elapsed between ASD diagnosis and parent ratings of satisfaction, five took place within a year or less from diagnosis and 10 were within five years following a diagnosis. A range of countries and socio-economic backgrounds was represented; however, White/Caucasian was the predominant ethnic background represented by these articles. Diagnostic assessment was most common using a multidisciplinary team (9), with paediatricians (5), psychiatrists (5), and psychologists (5) being the most common single professions seen. Most studies created their own questionnaires to determine levels of parental (dis)satisfaction. Examined articles included qualitative, quantitative, or a combination of these to measure parental satisfaction. Generally, measures sought information on when parents first became concerned, the diagnostic process, care from medical professionals, concerns parents had during/following the diagnostic process, and reasons for (dis)satisfaction. Qualitative measures were frequently analysed by at least two researchers and focused on identifying themes that appeared across participants. Quantitative measures frequently utilized a 4- or 5-point Likert scale (e.g., very dissatisfied to very satisfied) and analysed via chi-square, ANOVA, or regression. Although the articles included in this review span multiple decades and recognizing that the assessment and treatment of ASD has advanced throughout the years, general study designs, sample characteristics, and findings followed consistent themes (e.g., length of time on a wait-list was a significant factor related to dissatisfaction throughout the decades).

Results

The results of the included studies were initially categorized into factors pertaining to satisfaction and those related to dissatisfaction. There was some overlap across these two terms (i.e., the presence of a factor could be reported to lead to satisfaction and an absence of the same factor to dissatisfaction); however, this connection between the two outcomes was not consistent and each appears to have uniquely related factors (see Table 2). As such, this initial categorisation was seen to fit the data effectively. Subsequently, topics relating to pre-assessment, assessment, the process of diagnostic disclosure, and post-assessment were identified within each category. Statistical significance of results is stated for quantitative studies when available.

Factors Related to Parental Satisfaction

Pre-assessment

Eight articles contained information pertaining to factors related to parental satisfaction with pre-assessment aspects of the clinical process(es) for their child. Participants reported significantly greater satisfaction when their initial concerns for their child’s development were accepted by professionals (Brogan & Knussen, 2003; Moh & Magiati, 2012), and generally when their referral to a diagnostic team was facilitated by their family doctor in a seamless manner (Minnes & Steiner, 2009; Ryan & Salisbury, 2012). Once the referral was initiated, families indicated significantly greater satisfaction when they were provided information about the process and time commitment required (Abbott et al., 2012; Hackett et al., 2009; Moh & Magiati, 2012). Finally, parents who self-reported as having greater education and family income reported significantly greater satisfaction with the diagnostic process (Goin-Kochel et al., 2006; Hidalgo et al., 2015; Ho et al., 1994), presumably arising from enhanced ability to access health and clinical services.

Assessment

Seventeen articles described factors related to parental satisfaction with the process of diagnosis. Specifically, parents reported significantly greater satisfaction when their child was diagnosed earlier in development (Andersson et al., 2014; Goin-Kochel et al., 2006; Howlin & Moore, 1997; Renty & Roeyers, 2006; Ryan & Salisbury, 2012; Siklos & Kerns, 2007) and when their child demonstrated greater communication impairment (Siklos & Kerns, 2007). Parents also experienced significantly greater satisfaction when the diagnostic process was speedy and efficient (Crane et al., 2016; Ryan & Salisbury, 2012), with one study suggesting that less than a year was ideal (Howlin & Moore, 1997) and another indicating two months to be an ideal amount of time (Andersson et al., 2014). Parents appreciated when the assessment was perceived as comprehensive (Abbott et al., 2012) and significantly preferred collaboration between themselves and the clinicians (Abbott et al., 2012; Brogan & Knussen, 2003; Chamak et al., 2011; Hackett et al., 2009; Moh & Magiati, 2012). Parents were more satisfied when the assessment was conducted by multidisciplinary teams (Andersson et al., 2014; Hidalgo et al., 2015; Ho et al., 1994) whose members were perceived as specialists in ASD assessment (Howlin & Moore, 1997; Midence & O’Neill, 1999; Sansosti et al., 2012). Parents significantly appreciated receipt of a definitive diagnosis upon conclusion of the assessment (Abbott et al., 2012; Brogan & Knussen, 2003; Howlin & Moore, 1997) and when teachers or other school personnel were involved in the assessment (Andersson et al., 2014).

Diagnostic Disclosure

Twelve articles described factors related to parental satisfaction with disclosure of the diagnosis upon completion of the assessment. Parents reported that receipt of a written report at the time of disclosure (Abbott et al., 2012; Brogan & Knussen, 2003), which did not contain too may confusing medical terms (Hackett et al., 2009), significantly enhanced their satisfaction with the process. Parents were most satisfied when provided understandable and detailed information as to why their child met the diagnostic criteria for ASD (Abbott et al., 2012; Andersson et al., 2014; Crane et al., 2016; Hackett et al., 2009; Jashar et al., 2019; Moh & Magiati, 2012; Renty & Roeyers, 2006; Siklos & Kerns, 2007; Whitaker, 2002) and significantly when afforded the opportunity to ask questions of the clinical team during disclosure (Abbott et al., 2012; Brogan & Knussen, 2003; Hackett et al., 2009). Finally, parents expressed greater satisfaction when there was sufficient time allocated for the disclosure meeting (Abbott et al., 2012; Chamak et al., 2011; Hackett et al., 2009) and when the clinical team was perceived as professional and sensitive to parental needs (Jashar et al., 2019).

Post-assessment

Seven articles discussed factors related to parental satisfaction regarding post-assessment issues. Specifically, parents reported that provision of detailed information regarding community-based supports for their child led to greater satisfaction with the assessment process (Andersson et al., 2014; Moh & Magiati, 2012; Renty and Roeyers, 2006). Similarly, parental satisfaction was improved when they were able to connect with, and receive support from, such agencies (Whitaker, 2002), and significantly when they were able to be connected to other parents who have completed the diagnostic process for their child(ren) who could provide advice/guidance to families of a newly diagnosed child (Chamak & Bonniau, 2013; Crane et al., 2016; Renty and Roeyers, 2006; Whitaker, 2002). Finally, parents described greater satisfaction when afforded the opportunity for a follow-up session with the diagnostic team subsequent to disclosure to discuss issues or questions that may have arisen (Abbott et al., 2012).

Factors Related to Parental Dissatisfaction

Pre-assessment

Twelve articles described factors related to parental dissatisfaction with the pre-assessment phase. Parents experienced greater dissatisfaction when their concerns for their child’s development were minimized or not appreciated by clinical care providers (Chamak & Bonniau, 2013; Chamak et al., 2011; Crane et al., 2018; Ho et al., 1994; Ryan & Salisbury, 2012; Sansosti et al., 2012). Parents also experienced heightened dissatisfaction when they visited medical clinics multiples times before their concerns were taken seriously (Andersson et al., 2014) and when they felt blamed for their child’s symptomatic behaviours (Chamak et al., 2011; Crane et al., 2018; Midence & O’Neill, 1999). They were also dissatisfied when they experienced difficulty in referral to, or access of, the ASD diagnostic clinic (Chamak et al., 2011; Goin-Kochel et al., 2006; Hidalgo et al., 2015) and when their child presented with more severe ASD symptomatology (Moh & Magiati, 2012).

Assessment

The most common factor discussed was parental dissatisfaction with the diagnostic process, with 16 articles describing this issue. Parents were dissatisfied when their child was assessed by professionals they perceived of as non-specialists, such as general practitioners or professionals who were perceived as being disconnected from contemporary understandings of ASD (Midence & O’Neill, 1999; Sansosti et al., 2012) and when their child presented with greater behavioural difficulties during the assessment (Crane et al., 2018), potentially reflecting the diagnosticians’ challenges with working with those with ASD. Parents also became significantly distressed with a greater number of different professionals involved in the diagnostic team (Goin-Kochel et al., 2006; Renty & Roeyers, 2006). They expressed frustration when the diagnostic team presented as unprofessional or uncaring of the parents’ concerns (Chamak et al., 2011; Crane et al., 2018), and when they did not feel as though rapport with the clinical team had been appropriately established (Crane et al., 2018). The most common variable described in the review was significant parental dissatisfaction with the length of time the family remained on a wait list to undergo the diagnostic assessment (Abbott et al., 2012; Brogan & Knussen, 2003; Chamak & Bonniau, 2013; Chamak et al., 2011; Crane et al., 2016; Howlin and Asgharian, 1999; Keenan et al., 2010; Moh & Magiati, 2012; Potter, 2017; Renty & Roeyers, 2006; Sansosti et al., 2012; Whitaker, 2002). Specific timelines were not often reported; however, dissatisfaction increased following as little as a 1.5-year delay from referral to diagnosis (Keenan et al., 2010).

Diagnostic Disclosure

Eleven articles provided information relating to parental dissatisfaction with the diagnostic disclosure process. Parents experienced frustration when there was not a formal and effective process of diagnostic disclosure (Chamak et al., 2011). Specifically, parents disliked feeling overwhelmed by too much information (Jashar et al., 2019; Keenan et al., 2010), or when the clinical team was perceived as insensitive to parental needs during the feedback (Potter, 2017). Parents also expressed dissatisfaction when the outcome of the assessment was a lack of definitive diagnosis (Abbott et al., 2012; Chamak & Bonniau, 2013; Jashar et al., 2019) and when they did not receive specific details regarding how their child met the criteria for the diagnosis (Chamak et al., 2011; Jashar et al., 2019; Whitaker, 2002). Parents also disliked receiving vague details about what ASD is and when the clinical team used confusing terminology during the feedback session (Crane et al., 2018; Sansosti et al., 2012; Whitaker, 2002). Lack of sufficient time for the disclosure meeting and a process to clarify misunderstandings or uncertainties during the disclosure also reduced parental satisfaction (Whitaker, 2002). Finally, parents sought details regarding developmental outcomes for their child and were significantly dissatisfied when they did not receive such information (Mansell & Morris, 2004).

Post-assessment

Eight articles reported on factors related to parental dissatisfaction subsequent to the assessment process. Ho et al. (1994) reported that parents desired interventions specific to their child’s unique needs and were dissatisfied if none were provided. Parents also sought information about local/regional treatment or support options for their child and were significantly dissatisfied if they did not receive sufficient leads to follow up on (Crane et al., 2018; Mansell & Morris, 2004; Potter 2017; Sansosti et al., 2012; Siklos & Kerns, 2007; Whitaker, 2002). Finally, parents indicated a desire for a follow-up session with the clinical team to discuss issues or questions that had arisen subsequent to the disclosure meeting; a lack of such opportunity was related to dissatisfaction (Crane et al., 2018; Jashar et al., 2019).

Discussion

The increase in prevalence of ASD has led to greater focus on research to identify effective assessment processes. Such research serves to highlight important elements of parental experiences with clinical practices related to the assessment of ASD. This systematic review was undertaken to provide a synthesized examination of factors related to parental (dis)satisfaction with the assessment process and to provide important suggestions for clinical practice and future research. Thirty-six indicators of parental (dis)satisfaction with the assessment process were identified that can be considered through the context of a timeline (pre-assessment, assessment, diagnostic disclosure, and post-assessment), with 10 of these indicators spanning both positive and negative parental experiences (i.e., the presence of a factor contributes to satisfaction and the lack of a factor to dissatisfaction).

Given that the actual assessment process is typically a brief period of time in a family’s life (and that speed of referral, reduced time on a wait list, and speed of the assessment process were all indicators of satisfaction), a second context in which to consider the indicators can be discerned—those indicators that clinicians have (at least some) direct control over and those that they do not. Seen in this way, aspects of parental (dis)satisfaction vary in the degree to which clinicians may have direct influence. As clinicians operate within organizations that establish policies and practices around how referrals are received, the timelines for wait lists, team composition, and how assessments are conducted, some indicators of parental (dis)satisfaction are organizational in nature and so clinicians may have little influence in addressing them. As well, factors related to the severity of the child’s symptoms, or their degree of challenging behaviour coming into assessment, are outside of clinician control. When considering this context of clinician influence as embedded within the timeframe of assessment, the quality and effectiveness of clinician communication and relationship building with parents can be differentiated as more directly influenced by clinicians.

Communication and Relationship Building

Clinicians can influence parental (dis)satisfaction, ultimately aiming to increase satisfaction, by managing the communication between clinician(s) and parents and striving to enhance working relationships with parents and other professionals. A collaborative relationship between clinicians and parents that involves open and effective communication throughout the process may increase parental satisfaction. The reviewed studies indicated that clinicians, including those who are in initial receipt of parental concerns such as family doctors, can enhance parental satisfaction by first acknowledging and accepting parental concerns and reducing parental stress regarding assessment by having open discussions about the referral and diagnostic process (Abbott et al., 2012; Moh & Magiati, 2012). By explaining this information adequately and affording parents opportunities to ask questions, parents can enter the assessment process knowing what to expect and feeling as though their concerns were heard and appreciated. This avenue of open communication may allow clinicians to understand and recognize how parents are responding to the assessment process, as well as address possible misunderstandings (e.g., parents feeling blamed for their child’s behaviours), leading to greater satisfaction. Furthermore, parental satisfaction increases when clinicians create effective working relationships with parents and other professionals (e.g., teachers, occupational therapists, speech language pathologists, etc.; Andersson et al., 2014). Although multiple professionals involved in the assessment may enhance satisfaction (use of a multidisciplinary team), the involvement of too many professionals may decrease satisfaction (Goin-Kochel et al., 2006).

When assessment activities end and feedback regarding diagnostic outcome is initiated, effective communication again plays a key role in parental (dis)satisfaction. A formal feedback process that allows the clinician/clinical team time to explain diagnostic conclusions, supports parental processing of this information, and allows time for questions can lead to satisfaction (Abbott et al., 2012; Mansell & Morris, 2004). By engaging in an effective feedback process, clinicians demonstrate care and sensitivity to the needs of parents, facilitate stronger working relationships, and address possible misunderstandings and uncertainties (Jashar et al., 2019; Whitaker, 2002).

The reviewed articles indicated that parents desire an understanding of what ASD is and how their child does or does not meet the diagnostic criteria (Abbott et al., 2012; Chamak et al., 2011; Whitaker, 2002). Clinicians may increase satisfaction by ensuring appropriate language is used in both the feedback and written report (Crane et al., 2018; Hackett et al., 2009) to encourage open communication with parents and enhance parental understanding of the diagnosis. However, too much information can become overwhelming and stressful for parents (Mansell & Morris, 2004); clinicians should check in with parents frequently, help them to process information, and possibly separate the feedback process across multiple sessions to minimize information overload and increase parents’ perception of the clinician/clinical team as caring and open (Crane et al., 2018; Jashar et al., 2019).

Finally, after the assessment process comes to a close, clinicians may aim to increase satisfaction by providing parents with next steps. The outcome of an ASD diagnosis is likely to be a stressful and overwhelming experience that may lead parents to feel at a loss. Clinicians who provide information about next steps send parents a message of caring for the family that can enhance satisfaction. These next steps may include information regarding support groups, community and/or financial supports, and information about interventions that may help meet their child’s unique needs (Chamak & Bonniau, 2013; Moh & Magiati, 2012; Whitaker, 2002). Ultimately clinicians who seek to connect the parents with continual information and support may be perceived as more sensitive and caring, leading to higher parental satisfaction.

External Influences

As with any clinical work with families, there are some elements of the assessment process that are influenced by factors external to clinicians (e.g., organization, familial). However, these factors are important as they play a role in parental satisfaction.

Before parents even see clinicians regarding an ASD assessment, satisfaction is influenced by parental education, family income, and family doctors. Families report having gone to many clinics and seeing many professionals while being on lengthy waitlists before finally coming to the diagnostic team (Chamak et al., 2011; Renty & Roeyers, 2006; Sansosti et al., 2012). As access to effective healthcare and clinical teams is related to parental (dis)satisfaction, it will be important the efforts are dedicated to enhancing access to quality diagnostic services for a diverse population that varies in terms of race/ethnicity, religion, socioeconomic status, insurance coverage, etc. These factors influence parental (dis)satisfaction despite occurring prior to the initial clinician-parent meeting.

Another factor pertaining to parental (dis)satisfaction is the length of time needed for the assessment (Crane et al., 2016). Although clinicians can make many efforts to ensure that the assessment process is done in a timely manner, this is not always possible as there are organizational factors that influence the length and timing of the process (e.g., contacting other professionals, scheduling conflicts, etc.). One possible avenue to address this issue is greater training and awareness of primary care providers, such as family doctors, paediatricians, daycare and school teachers, etc., who interact with children frequently. Greater awareness of signs of ASD by these individuals may facilitate earlier referral for assessment and, subsequently, earlier age of diagnosis. Formal partnerships between educational and clinical professionals may also facilitate referral processes and ease of transition into the diagnostic process. As well, additional training to enhance the competence and/or number of available clinicians to conduct ASD assessment may increase parental satisfaction due to reduction in wait times. In line with this, healthcare systems need to be mindful that families with varying financial resources will try to access diagnostic services and so effort should be dedicated to addressing this need regardless of insurance coverage (e.g., the development of diagnostic teams in free clinics).

Clinicians are also unable to control when in development children come to get assessed (Andersson et al., 2014; Goin-Kochel et al., 2006; Howlin & Moore, 1997; Renty & Roeyers, 2006; Ryan & Salisbury, 2012; Siklos & Kerns, 2007), the severity of childrens’ presenting symptoms (Moh and Magiati 2012), or the presence of problematic behaviours (Siklos & Kerns, 2007), all of which influence parental (dis)satisfaction. Although these factors influence parental dissatisfaction prior to initial contact with diagnostic clinicians, clinicians can seek to employ strategies to lessen the impact of these factors. For example, screening of at-risk children may help to increase early detection and clinicians can demonstrate effective strategies for managing difficult behaviours.

Lastly, parental (dis)satisfaction is influenced when it is unclear if the child meets the criteria for an ASD diagnosis (Abbott et al., 2012; Chamak et al., 2011). Although children may be referred for assessment, there are many cases in which the families walk away without a diagnosis due to influences outside of clinician control (e.g. incomplete assessments due to external factors, co-occurring conditions overshadowing symptoms, etc.).

Implications

Parents of a child undergoing a diagnostic assessment for ASD experience many stressors in their life that can be exacerbated by the timeline and process of assessment, and the ways in which the clinician/clinical team engages with the family. Clinicians who establish effective rapport and send a message of responsible caring for the family throughout the process of assessment can enhance parents’ satisfaction. When considering the factors able to be influenced by clinical teams, the inclusion of multidisciplinary teams and options for additional feedback sessions produces financial and insurance implications. Organizations and clinicians must work collaboratively to determine the most effective pathways into and through diagnostic processes so that services can be accessed by the most people in the most cost-effective and efficient manner so as to promote satisfaction with the process.

Future Research

Researchers may wish to examine how many clinicians parents perceive as “appropriate” to complete the assessment effectively and how many is too many before parental satisfaction is negatively influenced. Researchers could also explore ways in which clinicians may address children’s presenting symptoms and problematic behaviours appropriately so that parents do not experience dissatisfaction on that basis. Researchers may also wish to explore effective means of increasing the accessibility of health and clinical services for parents of diverse backgrounds. Another avenue of research could be investigation of the negative feelings that parents experience upon receipt of an inconclusive diagnostic outcome and how clinicians can help families experiencing such emotions to process the information, including next steps. Finally, researchers could seek to identify the length of time on a wait list, and to complete the assessment, after which parents report feelings of dissatisfaction, with the goal of mobilizing that knowledge to enact change to organizational policies/practices.

Limitations

As majority of the articles included within this review opted to create their own questionnaires to assess parental (dis)satisfaction, it is difficult to determine the reliability and validity of the scales used. This creates a barrier for generalizing results to other populations and made it more challenging to determine the quality of the research conducted. Future research should consider developing a consistent and robust parental (dis)satisfaction scale to strengthen the research done on this topic. Furthermore, the majority of articles did not include specific timelines when discussing factors related to parental (dis)satisfaction (e.g. when in development is satisfactory for assessments to happen, how long is too long on waitlists/from assessment start to end). This makes it difficult to draw definitive recommendations for clinicians pertaining to factors related to time. As well, the majority of articles relied on retrospective parental report at least one year post-diagnosis; this carries the potential for parental reports to be incorrectly recalled and/or modified by confounding factors (e.g. difficulties faced after the process).

Conclusions

This systematic review has summarized the literature on parental (dis)satisfaction with the ASD assessment process. Factors related to parental (dis)satisfaction can be understood as embedded along a timeline as well as being influenced either by the clinician(s) working with the families or by external factors. Clinicians who seek to increase parental satisfaction may do so through facilitating good communication and appropriate relationships. Furthermore, clinicians who are aware of and understand external factors influencing parental (dis)satisfaction may be better able to respond appropriately and minimize the impact of such factors on the working relationship between parents and clinicians. Ultimately, it is hoped that this review will reduce the potential negative impact of the diagnostic process and enhance quality of care and clinical approach with families.