Introduction

Disparity within the autism spectrum disorder (ASD) diagnostic process and variable professional standards across countries are leading to what has been described as a worldwide discrepancy of ASD prevalence (Zaroff & Uhm, 2012). With limited comparable studies across countries, there has been a lack of clarity as to whether a uniformed approach to an ASD diagnosis is being applied, including diagnostic measurement tools, length of time in assessment, the standard age of diagnosis, and the teams involved in making the diagnosis. Furthermore, added to the issue of fidelity is the impact of the ASD diagnostic process on parents whose child is being assessed. Each of these variables have been identified as potential detrimental risks into a family’s trajectory, from the moment of diagnosis (Ekas et al., 2015; Elder et al., 2017; Harstad et al., 2015). The aim of this review is to identify and compare findings published from a spread of countries on the topic of, reported parental dis/satisfaction and the diagnostic processes applied through their child’s ASD assessment. For the purpose of attempting to display reported similarities and disparities in the diagnostic process across location and cultural contexts are displayed visually in evidence gaps, and to explore potential themes leading to higher levels of reported parental satisfaction explored.

Prevalence of Autism Spectrum Disorder

In 2012, a systematic review was conducted with a primary aim to establish prevalence rates worldwide (Elsabbagh et al., 2012). The secondary aim of that review was to establish relational links between reported prevalence rates with outstanding factors. Areas under review included, but were not limited to, socio-economic, geographic, or cultural factors. It was suggested that the worldwide prevalence of ASD in 2012 sat at approximately one child in every 160 children. A limitation highlighted was that, due to the worldwide discrepancy in diagnostic criteria being used to make a formal diagnosis, it was difficult to gain a reliable estimate of prevalence. The dearth of research available on the current prevalence rates worldwide may be due to a lack of comparable standards of what ASD is comprised, and so comparing worldwide results is a disputable process. Thus Zaroff and Uhm (2012) claim that “available evidence suggests that methodological factors are largely responsible for differences in ASD prevalence across studies” (pp. 395).

Parental Experience

Parents of children with ASD are reported as experiencing higher levels of stress, lower quality of life (Hsiao, 2018), increased family stress (Donovan, 1988), and lower marital intimacy (Fisman et al., 1989) when compared to parents of children with a diagnosis of another childhood disorder or no disorder. Studies have explored moderators which increase parental stress, including isolation and individual coping styles (Dunn et al., 2001). Ergüner-Tekinalp and Akkök (2004) attribute increased stress to parental expectations of their many roles, including primary caretakers, managers, behaviour models, disciplinarians, agents of socialisation, and effective teachers. The extended responsibilities are often exacerbated with the often entirely new or different approaches to parenting following the ASD diagnoses, particularly if their child’s symptoms are severe or in the presence of a co-morbidity, such as a learning disability (Dunn et al., 2001). Such research suggests that parents’ levels of reported stress can vary drastically throughout their parenting journey with their child with autism.

The use of psychological interventions for parents of a child diagnosed with a developmental disorder, including ASD, have shown to be effective in reducing parental anxiety, depression, and stress, at the immediate moment they are delivered. However, results appear to fade over time when follow-ups have been conducted (Sohmaran & Shorey, 2019). One experience, that all parents of children who have been diagnosed with ASD share, is the process of diagnosis. This begins from the point of raising concerns about their child, or being made aware of potential concerns, through to receiving an actual diagnosis. Correlations that show a ‘resolved’ parental reaction to a diagnosis of ASD for their child can be attributed to a younger age of diagnosis and a speedier diagnostic process (Barnett et al., 2006). Parents who were left with negative feelings around their child’s ASD diagnosis suggested areas of improvement to include a quicker, easier process with coherency, and structure; increased professional awareness of ASD; stronger interpersonal skills between professional and parent; and dissemination of accurate and current information on ASD (Osborne & Reed, 2008).

Having reviewed the factors that can impact the life of a child with ASD, a key link can be established between the importance of the parental relationship. There is also the potential for increased stress during the diagnostic process. It is therefore vital to acknowledge that the process leading to a diagnosis of ASD may not only set a particular trajectory for that parent, but subsequently for the diagnosed child (Reed & Osborne, 2019).

Considerable studies have been published on parental experiences in the diagnostic process, yet there is an absence in the corroboration and thematic analysis of these findings. Furthermore, there is a continued absence in comparing these findings within a cultural context and the potential further impact this may have. Therefore, it is hard to determine which variables contribute to a satisfactory experience and those which weigh against it. It is timely to draw on these variables in a systematic way in order to create a comparative inquiry.

Purpose

The purpose of the study was to examine the potential contributing variables that occur within the experience of an ASD diagnostic assessment, with particular focus on the reported parental lived experience of parents whose children are assessed within a given national context. Through a comparative lens a selection of thematic variables were identified, collated, represented, and discussed, in relation to potential variables that may have contributed to feelings of satisfaction or dissatisfaction to their child’s ASD diagnosis.

The central research question framing this project was ‘Which national variables are identified within parents’ reporting of the experience of ASD diagnostic assessment of their children?’.

Methods

Study Design

A systemic literature review approach was employed for this review. Within PRISMA framework (Moher et al., 2009) for systematic literature reviews, the authors searched, selected, collated and organised the available studies into a comparable state; critically engaged with the included studies to allow for the presentation of emerging themes; and identified gaps in the current research, which informed recommendations for future research.

Sample Selection

To avoid duplication with this review, a preliminary search was conducted prior to commencement on the Cochrane Database of Systemic Reviews. Key terms (namely autism; diagnostic; experience; parents; country; comparative) ascertained that previous studies related to this topic have not been completed nor retained there.

To reduce publication bias and given the small sample pool of appropriate studies, the search for this review included grey literature, published, and peer-reviewed journals and non-peer reviewed research. The databases listed in Table 1 were accessed in the months of March–July in 2020.

Table 1 List of dxatabase search engines and grey literature sources utilised for this review
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The key terms used in this review were a combination of controlled vocabulary texts (Table 2), covering a selection of key themes, and natural language to enhance the searching procedure in procuring appropriate and valid studies (guided by the approach of Higgins et al., 2019). Boolean operators, such as AND, OR, NOT, and truncation symbols, such as *, were applied to broaden the potential scope of studies that may be included (EBSCO, 2018).

Table 2 Key terms applied within the online database search
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Text selection was based on the PRISMA (2009) protocol, which outlines key features of consideration to include, namely participants, interventions, comparisons, outcomes, and study design (PICOS).

The review collected studies with participants who were the adult(s) responsible for the care of child(ren) undergoing the assessment and diagnosis of ASD. This was inclusive of birth-, adoptive-, foster parents, legal guardians, and immediate or extended family members residing with the child. For ease of reference, ‘parent’ is the term utilised in this review. Inclusion criteria extended to studies that explicitly reported a confirmed diagnosis of ASD, as a result of a diagnostic process. Positive and negative outcomes of parental experiences were included, with the addition of terms such as outcomes, satisfaction, or experiences.

The terms ‘satisfaction’ and “dissatisfaction’, which are used in this review, relate to a parent’s reported perceived experience of diagnostic process of having their child diagnosed with ASD. This includes, and is not limited to, those who identified a clear satisfactory or dissatisfied outcome; those who reported feelings of acceptance as a result of a satisfactory process; and those who felt unsettled or unaccepting of the diagnosis, as a direct response to the diagnostic process not meeting expectations.

The threshold for inclusion of a country was one available study that met the inclusion criteria. The initial approach was to include both primary and secondary studies. After extensive searches, no secondary datasets were located which met the inclusion criteria. There was no discrimination related to research design, including qualitative, quantitative, and mixed methods data. Language restrictions were limited to texts either published or publicly available in the English language (including translations). This was to aid the diversification of appropriate studies across the globe to be included in the review.

Screening and Risk of Bias

Initial title screening led to 1175 articles selected for consideration. Of these, 222 results were selected from abstract review, with an additional 44 studies derived from reference trawling. From these 266 articles, 54 studies were included for full text screening. Duplicates were then removed (n = 32). From the full text screen, 34 studies were selected for inclusion in the final data range (Fig. 1). They are listed in ‘Further Reading'. The 34 studies in this review captured 4169 parental testimonies.

Fig. 1
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Flow chart of inclusion

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Methodological designs of the included studies were delineated as follows: qualitative (14), quantitative descriptive studies (11), and mixed methods (9), as categorized by the mixed methods assessment tool, MMAT (Hong et al., 2018). Qualitative studies accounted for highest sole portion (41%) of the entire sample in this review. As study research paradigm was not a criterion for inclusion or exclusion, this well-balanced representation of study paradigm was naturally occurring within the available sources.

Publication dates of included studies within this review span from 2004 to 2021. Figure 2 is a box plot and whiskers statistic table representing the data spread of the studies included in this review and their year of publication. This table shows the median year of publication as 2016, with box range quadrants ranging from 2018 to 2012. The whiskers demonstrate minimum and maximum year of studies included.

Fig. 2
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Box plot and whisker diagram representing data spread of publication date of studies included

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The MMAT is a risk of bias critical appraisal tool, used to appraise the methodological quality in systematic mixed study reviews. Studies appraised using the MMAT were scrutinized across 5 areas, resulting in a score, reflecting the studies potential bias. The risk of bias assessment, according to the MMAT protocols (Hong et al., 2018), placed 23 studies with a full high score of 5, one study with a score of 4.5, six studies with a score of 4, three studies with a score of 3.5, and one study with a score of 2.5. No studies were excluded based on these results.

Analytical Approach

Once collected, the population of studies was analysed to produce key themes in relation to the study objectives. A manual thematic analysis highlighted compounding themes and provided space to explore emerging themes. EPPI-Reviewer 4 was utilised as a research synthesiser for this review. From each study included, a parental outcome was recorded. These outcomes were as delineated by the reported outcomes reported in the original text and labelled, as satisfied or dissatisfied. However, it should be noted that each study representing a satisfied or dissatisfied outcome, may not have been representative of a unanimous participant group, but rather a consensus agreed on by the participant group. The variables, as described within the original text of each study, were used to build the barriers and enhancement sub-categories of this review, as displayed in a series of evidence gap maps further on.

Representation of Data

An evidence gap map is typically used to consolidate research into demonstrating what is currently known and where gaps exist (Higgins et al., 2019). In this paper, five gap maps have been designed to demonstrate the results of this review, each of which demonstrate different key areas in relation to the objectives identified within this review. They provide readers, researchers, policy makers, and those involved in a knowledge transfer process, a clear and indicative view of each of these elements within a specific country. They enable the reader to gauge how each different country compares; the variables that can or should potentially be replicated for satisfaction; and gaps that represent perceived negative experiences within the diagnostic procedure of ASD which may be causing higher levels of dissatisfaction.

Results

Countries Represented

Of the 34 studies included, 16 countries are represented by at least one study per country. Figure 3 displays the number of studies included by country. Those with one publication included were Australia, Denmark, Ethiopia, France, India, Malaysia, New Zealand, Singapore, and South Africa; countries with 2 studies included China, Ireland, Sweden, and Vietnam; one country, Canada, was represented with 3 studies; United States of America (USA) in 6; and the UK in 9. The latter included representation from the four devolved nations (England, Wales, Scotland, and Northern Ireland), in addition to the Republic of Ireland, which is not in the UK, with one paper causing dual counting of that within the UK. Indicated by grey shading in the figure, many countries are not represented in this sample due to a lack of available or appropriate studies. Figure 3 acts as an overall geographic evidence gap map indicating published, accessible knowledge about parental satisfaction of their child’s ASD assessment and diagnoses.

Fig. 3
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Map of countries indicating where published studies report on parental satisfaction

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The evidence gap maps included in this review were coded and designed using the EPPI-4 reviewer software. The primary evidence gap map is A cross country comparative analysis of reported parental satisfaction with the autism diagnostic process (Supplementary Figure S1).

There were 26 studies which reported that parents were unsatisfied with the diagnostic process of having their child diagnosed with ASD, with eight reporting satisfaction. For the countries with one study included, such as France, Singapore, Ethiopia, Malaysia, India, and South Africa, it was not possible to reach a thematic consensus when considering sample size compared to population rates and further factors that may influence a reliable sample population spread. As each study included within this review represents varying numbers of participants, one cannot assume that each study included is equal in size to another. The term ‘rate of dissatisfaction’ is used to reflect studies that reported at least a majority response of dissatisfaction and were therefore categorised as studies reflecting those dissatisfied with the diagnostic process. Ireland and Vietnam included two studies with 2/2 rate of dissatisfaction; Canada included three studies with 3/3 rate of dissatisfaction; USA was included by six studies with 6/6 rate of dissatisfaction; and UK was included by nine studies with a dissatisfaction rate of 6/9. China was represented in this review by the inclusion of two studies and reported the rate of dissatisfaction as 1/2; as was reported for Sweden. Australia, New Zealand, and Denmark reported 1/1 parental satisfaction with a representation of one study per country.

Applied Diagnostic Methodology

When comparing the approaches across countries, diagnostic methods demonstrated great variability and showed a non-conformity to any unified method. This is indicated in the evidence gap map Diagnostic procedure applied, parental dis/satisfaction, and cross country comparison (Supplementary Figure S2).

Twelve studies did not provide explicit information about the diagnostic methods used. These are represented in the ‘Unspecified’ section of the map.

None of the studies included in this review identified the ICD-10 as criteria applied to diagnosis. Some studies indicated a variety of methodologies used within the diagnostic process; all variables identified were selected in these instances. Studies with parents reporting ‘other criteria identified’ included Denmark, Ethiopia, India, UK, and the USA. Of these were 3 studies which indicated that the ADOS tool was applied; 3 studies which indicated clinical judgement was used; 1 study which reported that the DSM-IV; and 1 study which indicated the use of the DSM-IV-TR. This may be indicative of the lack of clear directive on how autism is diagnosed worldwide.

In a number of contexts in the global South, specifically China, Vietnam, India, and Ethiopia, a diagnosis made by a single person was more common. In all of these, it was highlighted as a barrier by parental report. The 6 studies that indicated a multi-disciplinary approach, had the highest frequency of reported parental satisfaction compared to any other variable. Yet it is important to highlight that this was matched with six unsatisfied studies within the same criteria of a multi-disciplinary approach.

Enhanced Satisfaction

The evidence gap map Identified enhancers of experiences, parental dis/satisfaction and cross country comparison (Supplementary Figure S3), shows each of the main themes within enhancement variables as identified by parents.

These enhancements may have been experienced by the parents directly or may have been identified within recommendations from the parents when reporting on what would have improved their satisfaction. There were 16 identified themes as indicated in Table 3. Table 3, and subsequently Table 4, are ordered on the y-axis of most frequently cited through to least frequently cited.

Table 3 Enhancers of parental experience, from most to least frequently reported
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Table 4 Barriers to parental satisfaction, from most to least frequently reported
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The most frequently identified variable, noted in all but three studies, was that of ‘Obtaining useful information or resources’ (n = 18); closely followed by ‘Improved sensitivity of professionals involved’ (n = 17); and ‘Receiving strong support from other professionals’ (n = 17). The most frequent suggestion to enhance the process did not relate to the methodologies but rather the usefulness and support for the parent through knowledge, responsiveness, and relations to professionals involved. Parents highlighted inconsistencies in the diagnostic process and that a ‘Clear and measurable diagnostic process’ would enhance the process. This was reported in 15 studies, representing findings from the countries of Ireland, China, UK, Vietnam, New Zealand, Ethiopia, India, South Africa, and the USA. Parents frequently identified long duration times as a barrier. Yet conflicting to this notion, some studies indicated that those parents who had experienced a fast diagnosis were also dissatisfied. Such processes were experienced as being hasty or not thorough enough, with recommendations for enhancement including a longer duration within the diagnostic process in China, UK, and Vietnam.

‘Cultural sensitivity’ was indicated as an enhancer across countries, including China, Vietnam, Ethiopia, Malaysia, and the USA. The studies highlighted within the USA under this variable were specially focused on the testimony of African-American parents or Latinx parents living in America. These findings may suggest that parents, of ethnic groups minoritised in that context, may have experienced that their cultural needs were not as appropriately addressed as those of the majority ethnicities during the diagnostic process.

Barriers to Satisfaction

Over 75% of the studies included in this review, highlighted a consensus of parental dissatisfaction with their experience, indicating major shortcomings in the diagnostic process. The evidence map Identified barriers or experience, parental dis/satisfaction, and cross country comparison (Supplementary Figure S4), indicates the thematic coding of barriers highlighted by parents, parental satisfaction, and the country associated.

There were 16 identified themes as represented in Table 4. The most reported barrier was ‘Lack of time/resources’ (n = 20), followed by ‘Professionals did not address parental concerns well’ (n = 17). The theme of ‘Lack of time/ resources’ was wide and covered many subthemes, which may have been a potential oversight in this review. Various subthemes fell within ‘lack of time/resources’ theme and were predominantly cited within countries with a privatised healthcare system. A privatised healthcare system was generally reported as a barrier to diagnosis, due to post-diagnosis interventions being expensive and sometimes unaffordable for many families (Tait et al., 2016). Another subtheme was that families who lived in rural areas had to travel long distances to find the appropriate healthcare professional to complete the assessment (Zeleke et al., 2018), thus impacting on parents citing a lacking of time/resources as a barrier. This barrier was also typically cited in relation to a lack of available services due to overburdened waiting lists (Crane et al. (2016).

Studies that represented responses from parents based in USA, were included in almost every barrier theme, except the two barriers themes ‘Quick diagnosis’ and ‘Too many professionals included in process’. The country where parents reported the lowest frequency of identified barriers was New Zealand. The only barrier reported in that country was ‘Process was too long including waiting time’. Studies of parents who received diagnosis in Australia, Singapore, and Denmark were noteworthy for the low frequency of identified barriers, each with studies identifying only two barriers to parental satisfaction.

‘Culture’ as a barrier was identified in over 60% of the countries included in this review, including China, Vietnam, Canada, Denmark, Ethiopia Malaysia, Sweden, India, South Africa, and USA. Following on from this, over two-thirds of these countries also identified a ‘Lack of understanding from community & extended family’, which may relate to socio-cultural stigmas found within communities when it comes to developmental disabilities, such as ASD. As a potential emerging theme within this review, this may be a novel finding. Cultural stigma in relation to an ASD diagnosis is not widely discussed nor reported as being problematic for parents within published studies and may be an area for further exploration. However, the contention of cultural sensitivity in diagnosis is not unique to ASD, with reporting on ethnic minorities in predominantly white contexts including diagnosing conduct disorder for African-American children (Mizock & Harkins, 2011), asthma for American Indian children (Rose & Garwick, 2003), and conducting speech and language assessments using standardised protocols for Indigenous Australian children (Pearce & Williams, 2013). Within the limited studies available in this area, most appear to relate to those racialised or marginalised in the Global North, with a gap of evidence pertaining to issues of in/sensitivity or discrimination of diagnoses of children of varying ethnic or cultural identities within the Global South.

Chronology of Diagnosis

The chronology of diagnosis was recorded in 25 studies. This included the child’s reported age when they received a diagnosis and how long the process of diagnosis took. The evidence gap map, chronology of diagnosis and age, parental dis/satisfaction and cross country comparison (Supplementary Figure S5), shows the mean age of diagnosis, the mean duration of diagnosis’ procedure, and the country applicable.

Diagnoses were made when the child was over the age of 5 in 7 of the 25 studies, representing 5 countries. A diagnosis was made between the ages of 4–5 in 6 studies, representing 5 countries. A diagnosis between the ages of 3–4 was in 8 studies, representing 5 countries. A diagnosis between the ages of 2–3 was in 5 studies, representing 4 countries. One study represented children diagnosed under the age of 2 years old.

The duration from the initial referral to diagnosis was identified most frequently as less than 18 months (n = 19), whilst some (n = 5) reported a period of over 24 months for this same process. The quickest reported diagnostic period was within the continuum of 0–6 months, in the parents reporting from Vietnam. The most cited duration was < 24 months (n = 5), closely followed by 12–18 months (n = 4) and 18–24 months (n = 4).

Of interest is that the country with the quickest diagnostic period, Vietnam, was also where parents cited ‘A quick diagnosis’ as a barrier to satisfaction within the same study (Ha et al., 2017). Unclear from such studies is what negatively impacted the parental experience of such a prompt procedure. This may be an area for further qualitative enquiry from parents about this procedural format and the associated experiences. It was highlighted earlier that studies from Vietnam reported a diagnosis was made by a single person in their methodology of diagnoses as well as being reported as making the quickest diagnosis. This may refer to parallel variables of how they are able deliver a quick diagnosis, as input and assessments are not from other professionals, which would allow one single person to make the diagnosis much quicker. However, 7 countries that indicated a single person diagnosis, including Vietnam, showed varying durations across every diagnostic duration theme recorded. This challenges the previous tentative interpretation that a single person diagnosis leads to a quicker diagnosis.

Discussion

Parental Satisfaction

From the 35 studies included, the number indicating a consensus of satisfaction by the participating parents was 8. The remaining 27 studies indicated higher prevalence of parental dissatisfaction. This indicates that, across a wide geographic spread, more parents reported that they did not have their needs or expectations met through this process, than those who did.

There is no similar comparative synthesis of data currently available with which to compare these findings. However, a systematic review of parental satisfaction within the four countries of the UK concluded that parents reported a varied response to the diagnostic process (Legg & Tickle, 2019). That same study reported emotional, informational, and relational needs as requiring further support. Consistent with their finding of informational needs, in this review, it was found that ‘lack of time/resources’ was one of the three most stated reasons for dissatisfaction. This was followed by ‘professionals did not address parental concerns well’, which is consistent with Legg and Tickle’s (2019) finding of relational needs. While Legg and Tickle (2019) found emotional needs as an area of concern for parents, emotional needs were not identified in this study’s thematic analysis of potential barriers to satisfaction as a standalone concern. This may be due to the lack of clarity of what constitutes an emotional need within the reporting of, or the data collected for, studies. It could be suggested that all needs that are identified by parents will have some level of impact on their emotional needs, and so emotional needs may not be measured in a reportable way, but that they are interwoven throughout the barriers.

Culture

Unanticipated was the frequency of the identified barriers to parental satisfaction that were categorised as ‘the lack of cultural awareness and sensitivity’ to ASD as a disorder. This barrier was identified by parents in studies relating to the following countries: China, Vietnam, Canada, Denmark, Ethiopia, Malaysia, Sweden, India, South Africa, and the USA.

The customary response of how social groups respond to an ASD diagnosis is a prominent barrier to enhancing the lives of children diagnosed with ASD and the adults who support them. Insights such as these may be indicative of the need to address public perceptions and awareness. These findings would suggest that geographical location alone cannot predict a barrier of culture. It is more likely to become a barrier when applied to the surrounding community or collectivistic sociocultural context.

This barrier cannot be attributed to national economies, as the countries spanned high, middle and low income countries. Nor can it be attributed to geographical location as the countries identified were across continents and regions. It is important to highlight that the studies representing the USA were studies of African-American and Latinx parents living in the USA, raising further inquiry as to the thread that links this cultural barrier amongst these countries. Bauer et al. (2016) suggest that cultural variability issues in diagnosing ASD may be, in part, attributed to the red flag traits of ASD, typically identified in the USA and Western Europe, being viewed as typical or desirable by other parts of the world. A red flag trait is a behavioural indicator that would, in consideration with other factors, be used in identifying children who may benefit from an ASD assessment. These traits typically include areas of child development such as lack of eye contact, less responsive non-verbal cues, apparent regression in development including language and perceived difficulties in play and social settings (Kennedy Krieger Institute, 2006). An example of how a trait may be interpreted differently depending on culture is that of eye contact in a child. A lack of eye contact is considered within the diagnostic criteria of both the DSM-5 and ICD-10 as a trait of ASD. However, this criterion is disputed in some non-western contexts where children may have been taught to avert their eyes from adults or professionals as a sign of respect (Bauer et al., 2016). Bauer et al. (2016) found that preliminary investigations were beginning to be conducted across countries and cultures to investigate whether either diagnostic criteria, DSM-5, or ICD-10, are culturally appropriate to discriminate identifying traits amongst culturally typical or taught behaviours internationally. Carruthers et al. (2018) have since delved into the cultural differences and similarities of autistic traits across India, Japan, and the UK. They reported that whilst there was a small selection of discriminating traits unique to each of the countries included, generally there was a universality of typically identifying traits across those countries.

This element continues to raise further questions on the adaptability of applying diagnostic criteria that have been developed in ‘western’ countries, such as USA (DSM-5) and in Europe (ICD-10), to varied cultural contexts. Furthermore, it raises questions about the imposition of norms on different socio-cultural groups within those contexts, and on minority or migrant groups with differing cultural beliefs and practices around such behaviours. The DSM-5 (2013) published a statement about ‘Cultural concepts in the DSM-5’ in response to this concern for cultural amendments within the manual to enable intercultural sensitivities. Mandy et al. (2013) sampled the DSM-5 cultural sensitivity between diagnosis made within the UK and Finland, finding a coherence across both countries and declaring that the DSM-5 did provide adequate cultural sensitivities to cross those two countries. Furthermore, the application of the DSM-5 or ICD-10 to the diagnosis of ASD in South Korea has been suggested as an adequate criterion tool, with many of the identifiable behaviours being reciprocated by children with autism in this country (Kim et al., 2016). However, the application of cultural sensitivity studies across wider worldwide settings is still very premature in its development.

Similarly, it has become apparent that ASD, as a disorder, is possibly premature in the development of our understanding. Diagnostic criteria continue to be updated, strengthened, and attuned with each new publication, making it more challenging to effectively test for variations in cultural sensitivity. This should be an area of immediate attention for gatekeepers within the realm of ASD, particularly those who may impact the trajectory of children’s lives within countries where the typically applied diagnostic criteria may be inappropriate.

The bleak reality of how some cultures customarily respond to an ASD diagnosis is a prominent barrier to enhancing the lives of children diagnosed with ASD and the adults who support them. Insights such as these confirm the continuation of public perception and awareness education. The findings from this study would suggest that geographical location alone cannot predict a barrier of culture. It is more likely to become a barrier when applied to the surrounding community or collectivistic sociocultural context.

Research Gaps

From the studies included, parents reported that approaches to diagnosing ASD — from the diagnostic tool used to the number of professionals involved in the process — were varied and inconsistent across the countries. This continues to affirm the need to produce constitutional recommendations for diagnosing ASD that can be applied internationally and inter-culturally.

The chronology of diagnosis displayed a range of reported age and time frames, from when a child is initially referred, the age at which they are diagnosed, and the length of time between those two markers. The importance of an early diagnosis has been explicitly directed with ASD research (Camarata, 2014; Eldevik et al., 2009; Landa, 2007). The results of parental reporting suggest that despite strong such strong evidence, children are still not receiving their diagnosis in a timely manner, and that parents are experiencing the diagnostic process for longer than is necessary or beneficial.

Gaps within the barriers and enhancements of a satisfactory ASD diagnostic process highlight considerable emerging gaps from the evidence. The gaps identified in these maps should direct understanding of what parents report they may need from the process of having their child assessed and diagnosed with ASD to improve their levels of satisfaction. These identified gaps may better inform decision makers of ways in which to proactively prevent future parents from experiencing such barriers and levels of dissatisfaction.

Several evidence maps were constructed for this study. Most notably, they demonstrate the context where more research should be undertaken to elicit the participation of parents. As services develop to support ASD diagnoses worldwide, it is important that this information is gathered and evaluations presented to practitioners and policymakers timeously, to allow for positive change for the benefit of parents and, in turn, their children with autism. From this review, the countries where published studies occurred were Australia, Canada, China, Denmark, Ethiopia, France, India, Ireland, Malaysia, New Zealand, UK, USA, Singapore, South Africa, Sweden, and Vietnam. Taking into consideration the limitation imposed by publication in English, this still does not account for the lack of reporting in Anglophone contexts or those where there is a prevalence of publishing or translating studies into the English language.

Limitations

This review reports only on those publications which included reporting on parental satisfaction. As such, we do not make claims about which studies have been published about ASD diagnosis for children in general, or about other stakeholders’ perceptions or experience.

Barriers to access, including language of publication and publication licencing agreements, impacted on which texts were included in this review. It is thus possible that publications do exist that match the criteria for inclusion for this review, which are published in languages other than English and/or are indexed on databases inaccessible to the university to which the authors are affiliated.

These points present limitations to the generalisability of the findings in this review. Claims made herein should be interpreted against these limitations, particularly for countries represented with fewer studies. It is hoped that the paper offers useful indications of both available information, within these parameters, and current gaps in reported academic for a about this area, to have been of sufficient value to interested readers.

Recommendation for Future Research

The studies that were included in this review were limited in selection and in the availability of appropriate studies published or translated to English. To gather a clear vision on the depth of this issue, within the area of parental satisfaction with the ASD diagnostic process worldwide, further exploration into finding and translating appropriate existing studies, would further contribute to a global evidence map.

This review attempted to map the testimony of parents through a collection of identified themes published by the original researchers. To genuinely represent the voices of parents’ worldwide, there should be opportunities created for such stakeholders to share their own testimonies, without prejudice, bias or direction. Doing so, would better enable direct, transparent, and nuanced insights from parents of how they experience and envision the matters that affect them and their children. Thus, there is validity in seeking to address the gaps identified in this review and to explore more deeply the concerns raised by this review, through participatory engagement with these stakeholders in future research processes.

Considering this review, recommendations for future practice within ASD should aim to focus on supporting, enabling, and empowering parents throughout the journey of autism, debunking sociocultural myths about autism, addressing cultural insensitivities, and promoting clear and concise diagnostic criteria.