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There is a gap in autism research from Low- and Middle-Income Countries (LMIC) where most children with autism live. This has contributed to a lack of culturally validated diagnostic instruments for autism and is a major barrier to early diagnosis, intervention, and research. The Arabic Language Autism Diagnostic Inventory (ALADIN) was developed based on the DSM-5 criteria and adapted to Arabic language and culture using primary source data. The aim of this study was to validate the Arabic Language Autism Diagnostic Inventory for the diagnostic evaluation of autism. A case–control study design was used to test the instrument for sensitivity and specificity for diagnosis of autism in children 2–5 years of age. Parents of 48 children with autism and 152 neurotypical children in Jordan completed the ALADIN. Demographic information from the participants in each group was summarized, and a Receiver Operating Curve (ROC) was fit to the data. A total score of 24 on the ALADIN had 77% sensitivity and 98% specificity for autism. The area under the curve (AUC) was 0.976, indicating strong performance in identifying children with autism. The ALADIN is the first instrument created specifically for Arab populations and is informed by cultural and linguistic data from the target population. Initial validation shows it has high diagnostic specificity for autism. Culturally informed instruments can improve access to early diagnosis and intervention and enhance autism research to improve care and outcomes in global populations.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Introduction
Autism is one of the most common neurodevelopmental conditions and impacts individuals across their life span (Hyman et al., 2020). Autism affects 1 to 2% of the world’s children and is characterized by deficits in communication and social interaction (Elsabbagh et al., 2012; Maenner et al., 2023; Zeidan et al., 2022). Autism is a leading mental health-related disability in both children and adults (Baxter et al., 2015; Kang et al., 2023), and imposes a heavy burden of disease on communities worldwide (GBD 2015 and Eastern Mediterranean Region Mental Health Collaborators, 2018); Kang et al., 2023; Salari et al., 2022). Early diagnosis and intervention can reduce lifelong disability and dependence (Carruthers et al., 2020; Daniolou et al., 2022; Pickles et al., 2016; Sandbank et al., 2023).
Diagnostic delays are a major barrier to accessing timely interventions for children with autism (Elder et al., 2016; Yingling et al., 2018; Zavaleta-Ramírez et al., 2020; Zuckerman et al., 2015); these delays are compounded in low-resource settings (Divan et al., 2012; Durkin et al., 2015; Masri et al., 2013). Additionally, most published research on autism is conducted in high-income countries (HICs) and validated on high-income populations (Durkin et al., 2015; Li et al., 2022). This is problematic as the research may lack culturally relevant factors and solutions for low- and middle-income countries (LMICs). LMIC is a World Bank designation based on per capita gross national income. (Canino et al., 1998; Daley, 2002; Grinker et al., 2021). In particular, the unavailability of diagnostic instruments validated in LMICs and diverse populations is one of the major barriers for early diagnosis and intervention. It also is a barrier to conducting much needed research on autism in LMICs (Nasir et al., 2020; Patel et al., 2013). Ashrafun et al., (2024); AlQahtani and Efstratopoulou (2023).
Social communication, child-raising, and socialization practices are primarily shaped by culture (Hwa-Froelich et al., 2004). Consequently, what is considered a deficit or alteration in social communication in inextricably linked with cultural norms. Very little is known about cultural differences in the manifestation of autism and how these differences impact presentation. Cultural norms shape what is considered a deficit or alteration in social communication, detection and societal significance of autism. It also influences decisions that trigger parental help seeking behavior (Golson et al., 2022).
It has been suggested that while the basic pathophysiological processes of disease are similar across populations, symptom expression, illness significance and narrative vary widely among cultural groups (Berry et al., 2011). One study that analyzed autistic traits across three cultures using the Autism Quotient-Child instrument found that although there was an overlap in items that performed well across cultures, only 10% were common across all three cultures (Carruthers et al., 2020). In another study from rural India, cultural factors influenced which autism symptoms parents recognized as abnormal and prompted them to seek help (Daley, 2004; Divan et al., 2012). For example, social impairments were more readily and commonly recognized by parents than abnormal language development, probably because social relatedness carries a high value within traditional Indian society. Family and social tolerance of variability and the “acceptance of some degree of abnormal as part of the normal” (Daley, 2004) in Indian culture may also play a role. A study from the United Arab Emirates examined Islamic perspectives on disease and disability, including autism. The authors presented evidence from primary Islamic sources to support a tolerant and supportive interpretation of Islam regarding these conditions (AlQahtani and Efstratopoulou, 2023). Similarly, a study from Bangladesh investigated community narratives surrounding autism and revealed significant cultural influences on the perception, interpretation, and causal attributions of autism (Ashrafun et al., 2024). Other studies have highlighted differences in parental perceptions of developmental delays within the same country (Tek and Landa, 2012). For example, Latino mothers were less likely than white mothers to perceive subtle language delays and reported fewer ASD symptoms in their children, regardless of socioeconomic status. Collectively, these findings underscore that cultural norms significantly shape both the perception and reporting of autism symptoms, further complicating diagnosis in diverse settings.
In Arab countries, several additional barriers to the care of children with autism have been described. These include a lack of recognition of autism by family and primary care health workers; a lack of both first line and specialist professionals with the training to make a diagnosis of autism; and financial, logistical, and social barriers to accessing the few diagnostic services that may be available (Hassan, 2019; Samadi and McConkey, 2011; Taha and Hussein, 2014).
Qualitative research that explored cultural expressions of autism symptomatology in Jordan identified several key differences from Western cultures in presentation of and parental reactions to autism. (Personal communication, Nasir et al., 2024). These included a high parental tolerance for developmental variability and the acceptance of individual differences in children. Additionally, there was a culturally driven tendency to minimize symptoms and to attribute developmental delays to positive individual personality attributes such as thoughtfulness or timidity. While language delays were frequently noted, symptoms such as social withdrawal, manifested by lack of response to name, limited interaction with family, and unusual motor behaviors caused greater concern. Importantly, there were cultural idiosyncrasies in normative parenting and parent–child interaction, communication, and play behaviors that influenced parental expectations and perceptions of their children, including lax limit-setting in early childhood and a reliance on social shaping of behaviors as children matured. Social phenomena that included allowing children unlimited access to screen entertainment and a heavy reliance on foreign domestic helpers in childcare also influenced patterns of interaction between parents and children. Stigma and misconceptions about autism also played an important role in parents’ help-seeking behaviors. In the Jordanian culture, parents, especially mothers, are primarily responsible for their children’s acculturation and learning, and therefore failure to achieve these milestones are viewed as failure on the part of the parents, especially the mother. (Oweis et al., 2012; Sama Consulting, 2024) This dynamic tends to lead to denial of the child’s problems leading to delays in diagnosis and treatment (Table 2).
Most of the autism diagnostic tools currently used worldwide were developed in high-income countries (HICs) (Lord et al., 2022). Some of these tools have been translated into other languages including Arabic (Table 1). The Childhood Autism Rating Scale (CARS) has been translated into Arabic (Akoury-Dirani et al., 2013); however, this translation did not include cultural adaptation. The Gilliam Autism Rating Scale (GARS) has been translated to Arabic and culturally adapted by a research team from Saudi Arabia (Alasmari et al., 2024). The Rapid Interactive Screening Test for Autism (RITA), a level 2 screening tool that does not require language for administration, was validated on a sample of 48 children with autism and found to have good sensitivity and specificity (Choeiri et al., 2023). The Social Communication Questionnaire was also translated into Arabic (Aldosari et al., 2019). All these tests are proprietary, require special training, and are time- and labor-intensive to administer. This makes their use in low-income settings challenging. The Autism Diagnostic Observation Scale Version 2 (ADOS-2) (Lord et al., 1994), considered to be the gold standard in the US has not been translated or validated in Arabic at the time of this writing.
Table 1
Autism Diagnostic Tools Available in Arabic
Autism assessment tool
Origin
Cultural adaptation
Sensitivity
Specificity
Proprietary
The Childhood Autism Rating Scale (Moon et al., 2019)
Does not demonstrate adequate criterion validity for use in assessment of complex community samples
Yes
The Rapid Interactive Screening Test for Autism (Lemay et al., 2020)
US
No
0.97
0.71
Yes
Social Communication Questionnaire (Barnard‐Brak et al., 2016)
US
No
0.64
0.72
Yes
Arabic Social Communication Questionnaire (Aldosari et al., 2019)
US
No
0.79
0.96
Yes
This lack of a practical, scalable diagnostic tool has contributed to a bottleneck between suspected cases and confirmed diagnoses, leading to significant delays in time sensitive interventions. In high-resource populations, even those with minimal barriers to specialist access, many children wait months or even years for a confirmed diagnosis of autism (Crane et al., 2016; Oswald et al., 2017; Zuckerman et al., 2017). In low- and middle-income countries (LMICs), the situation is considerably worse, with far fewer specialists and often substantial geographic and financial barriers to diagnosis new citation (Samms-Vaughan et al., 2014). Indeed, it is likely that the vast majority of the worlds children with autism never receive a diagnosis.
There is an urgent need for an easily administered sensitive, specific and culturally appropriate diagnostic tool that can be administered at the point of first contact with the health system. Such a tool would be crucial in ensuring timely diagnosis and access to early intervention, taking advantage of the limited but critical window of heightened neuroplasticity in early childhood. A diagnostic tool designed for use in primary care settings would help reduce the cost and logistical challenges associated with current diagnostic practices. Additionally, it would enable the collection of essential epidemiological data on autism in LMIC populations.
In this paper we describe the development and validation of the Arabic Language Autism Diagnostic Inventory (ALADIN), a novel 40-item Arabic-language autism symptom inventory developed by the authors, based on the DSM-5 diagnostic criteria and informed by Jordan’s cultural and linguistic environment.
Methods
Inventory Development
The first step in the development of the inventory was to generate a list of the behaviors associated with the core symptoms listed in the DSM-5 criteria for autism. This list, which consisted of 40 questions, was created simultaneously in English and Arabic, ensuring that the Arabic-language version accurately described the behavior in the context of the language and culture. The authors of the inventory are bilingual in English and Arabic and have extensive experience in autism diagnosis and research in both the US and Jordan. The selection of the behaviors and language included in the questionnaire was informed by qualitative data obtained from parents of children with autism and the naturalistic descriptions of their children’s symptoms in the Arabic language (personal communication: Nasir et al., 2024). Linguistic adaptation required the use of colloquial language to describe some of the behaviors, as the classical Arabic terms for these behaviors are not customarily used and lack wide currency. For example, the word conversation in Arabic حوار is a formal term and is not used in the context of an interaction with a child. Instead, we used the word كلام which simply means “talk” and دردشة which means “chat”. Other modifications included the use of certain expressions frequently used by parents to describe some of the behaviors associated with autism, such as using the term يكسر عينه literally meaning “breaks his eye” (gaze) to indicate poor eye contact. Another expression used by parents to describe food pickinessانتقائي translates literally to “selective”. The inventory was reviewed by an expert in the Arabic language, professionals with experience in the diagnosis and treatment of autism in Jordan, and groups of other medical professionals and lay parents. Minor adjustments were made based on the feedback from the reviewers. Two Arabic-language scripts were included for each question, one in classical Arabic and the other in the colloquial dialect of Arabic used in Jordan. The interviewer stated the questions in classical Arabic first, following with the colloquial Jordanian Arabic if the interviewer perceived that the parent did not understand or if the parent requested clarification of the question.
Validation Study
A case–control study design was used to test the sensitivity and specificity of the ALADIN in identifying children with autism. This design was selected to allow for initial validation by comparing responses between children confirmed to have autism and typically developing children. Parents of children 2 to 5 years of age who had been diagnosed with autism within the past 12 months, were recruited from Jordan University Hospital’s child neurology clinic. The autism diagnosis was made using the standard of care for diagnosis in Jordan: A clinical evaluation by a child neurologist. A control group consisting of parents of typically developing children were recruited from the general pediatrics clinic in the same hospital.
The inventory was administered by a research assistant with a Doctorate in Pharmacy, who had been trained in research methods and parent interviews. The assistant read the questions verbatim to the parents, first in classical Arabic and then in Jordanian colloquial Arabic and recorded the answers. The inventory administration took an average of 12 min to administer.
Of the 40 questions in the inventory, 30 were of behaviors that are common in typically developing children and are usually lacking in children with autism. Each question was given a choice of Yes, No or Sometimes. The responses were mapped to values of 0, 1 and 2 respectively. Absence of these behaviors was scored highest. The remaining 10 questions were of behaviors characteristic of the core symptoms of autism and are uncommon among typically developing children. These were reverse scored so that presence of these behaviors was scored highest. Children with autism had more autism behaviors and less typical behaviors so that the addition of the scores from both categories of questions pointed in the same direction. The summary score was calculated by adding the scores of the 40 individual items. Higher values on the summary score indicate higher levels of reported autism behaviors.
Collected demographic information included the child’s age and gender and the relationship of the family member being interviewed. Demographics were compared between the autism and typical groups using a t-test for age and Fisher’s exact test for categorical measures. Mean autism scale responses were compared using a t-test. Response distributions to the individual ALADIN items were compared using Fisher’s exact tests. The diagnostic capabilities of the ALADIN were evaluated using sensitivity, specificity, and a Receiver Operating Curve (ROC). Analyses were done using Stata v18 (StataCorp, College Station, TX).
The study was approved by the IRB of the University of Nebraska Medical Center and the Joint Ethics Board of the University of Jordan and Jordan University Hospital.
Results
The patients’ demographic information is presented in Table 2. The average age of the autism group was slightly greater than that of the typically developing group (51.8 months vs. 46.9 months; p = 0.037). More of the children in the autism group were male (77%), compared to 47% in the typical group. In the autism group, the mother was interviewed 65% of the time compared to 81% in the typical group.
Table 2
Demographics by Standard of Care Diagnosis
Standard of Care Diagnosis
Typical
Autism
p-value
N
152 (76.0%)
48 (24.0%)
Age in months, mean (sd)
46.9 (13.7)
51.8 (15.4)
0.037
Gender, n (%)
Male
72 (47.4%)
37 (77.1%)
< 0.001
Female
80 (52.6%)
11 (22.9%)
Person interviewed, n (%)
Mother
123 (80.9%)
31 (64.6%)
< 0.001
Father
7 (4.6%)
14 (29.2%)
Grandmother
12 (7.9%)
1 (2.1%)
Aunt
10 (6.6%)
1 (2.1%)
Mother and Father
0 (0.0%)
1 (2.1%)
Figure 1 presents the autism scale scores by standard of care diagnosis. Typically developing children generally scored lower compared to children with autism (mean of 10.8 vs. 35.6; p < 0.001). A receiver operating curve (ROC) shown in Fig. 2 reflects this result with an area under the curve (AUC) of 0.976, indicating very strong performance in identifying children with autism. For use as a diagnostic tool, a total score of 24 on the ALADIN had 77% sensitivity and 98% specificity for autism. The score was selected to maximize specificity needed for a second level diagnostic tool.
Fig. 1
ALADIN summary scores for children with autism and typically developing children
Fig. 2
Receiver Operating Curve for Autism by ALADIN
×
×
Supplementary Table 1 contains results for individual ALADIN items by standard-of-care diagnosis. Most of the questions are significantly associated with autism individually with a p value less than 0.05. In six questions, the difference between autism and typically developing children was not statistically significant (p > 0.05). However, the entire inventory showed high discriminating power for distinguishing between children with autism and typically developing children.
Discussion
We found a high correlation between the ALADIN summary score and the gold standard of diagnosis of autism made by an experienced specialist clinician.
Six questions in the ALADIN, which assessed common symptoms of autism, did not significantly differentiate typically developing children from those with autism. These questions focused on “hand leading,” sensitivity to changes in plans, sensitivity to loud noise, repetition (echolalia), low facial expressiveness, and interest in lights and rotating objects. For some symptoms, such as echolalia, heightened or fixed interests in specific objects, and sensitivity to changes in plans, the lack of significant differences was due to typically developing children displaying high levels of these behaviors. Other behaviors, such as “hand leading,” were infrequently reported in children with autism. Additionally, children in the autism group exhibited typical levels of facial expressiveness. Possible explanations for these findings include the idea that certain aspects of normative communication and behavior—such as repetition and intolerance to change—may not significantly differ between typically developing children and those with autism at ages 2–5 in Jordan. Alternatively, the inventory questions may not have fully captured the essence of the behaviors or the dominant cultural metaphors, suggesting a need for further modifications in future studies. Removing these six items did not affect the sensitivity or specificity of the instrument.
Despite the lack of discriminatory power of these six questions, we chose to keep them in the inventory for two reasons: First, the possibility that the performance of the questions may have been an artifact of wording, which might be improved in future versions; or second that the significance of these behaviors may emerge in research on different or larger samples.
The ALADIN was designed for use in young children up to 5 years of age. Developing a tool for evaluating older children would necessitate a larger sample size and more complex process of validation and adaptation, due to the higher symptom variability observed in older children with autism. Given our limited resources, and the critical role of early diagnosis and intervention in improving outcomes, we chose to focus on toddlers and younger children.
A key limitation of this study is its retrospective design and single-center patient recruitment. Nevertheless, because Jordan University Hospital is a national referral center drawing patients from across the country, the sample likely reflects a broader population than might be assumed.
The administration of the inventory took 12 min on average in this retrospective population who may have become familiarized with the symptoms of autism through previous evaluation of their children. It could arguably take longer in a population that did not have any familiarity with autism symptoms and diagnosis. Finally, the authors chose to have a researcher administer the inventory rather than having parents self-administer it. This decision was informed by the observations of researchers in Jordan who have noted very low response rates on self administered questionnaires. It is theorized that prevailing cultural attitudes toward divulging personal or private information is a factor (Li et al., 2022). It has previously been noted that marked cultural differences in privacy regulation regarding written materials and surveys exist; individuals from collectivist cultures generally prefer personal interaction and tend to be more skeptical of written formats (Dolnicar and Grün, 2007; Johnson et al., 2010). Although the facilitation by a researcher maximizes responses and clarifies ambiguities, it may also introduce influences such as social desirability and researcher bias.
The study design also precluded the possibility of blinding. Future studies that validate the instrument on a prospective sample drawn from a larger, more diverse population will be needed.
The diagnosis of autism has traditionally been a complex, resource-intensive, multistep process. Currently, the default gold standard for diagnosing autism internationally is a structured evaluation by a specialist physician. In Jordan-as in most countries-even this standard poses a significant challenge, since children in low-resource areas often lack access to qualified specialists. Even in high-income countries, most children receive only a single evaluation by an experienced professional due to limited diagnostic resources. (Barbaresi et al., 2022). In contrast, the ALADIN offers a practical alternative by potentially enabling a secure and nearly equivalent diagnostic assessment in primary care settings. This innovation has the potential not only to bridge the diagnostic gap in low- and middle-income countries but also to address resource constraints even in higher-income settings. By enabling a diagnostic evaluation that approximates the accuracy of specialist assessments, ALADIN may offer a viable solution for overcoming the resource limitations that hinder timely autism diagnosis worldwide. (Hyman and Kroening, 2023; Masri et al., 2013; Nasir et al., 2024).
If the results of this study are confirmed in other settings and populations, the concept presented by the ALADIN represents a paradigm shift in autism care. This accessible diagnostic tool, with high specificity compared to an established diagnostic gold standard, has the potential to enable point-of-care diagnoses. By removing barriers such as limited manpower, financial constraints, and geographic inaccessibility, ALADIN can facilitate early diagnosis and intervention for significant numbers of children in Jordan and potentially worldwide. Early and effective treatment, in turn, could have life-changing effects for these children and their families. Moreover, ALADIN’s accessible design may make it suitable for general publication with clearly defined cut-offs. This approach could empower parents, particularly those who might be unaware of autism or hesitant due to community stigma, to seek diagnoses for their children.
The widespread availability of a validated and accessible test would also allow the generation of valuable data to support much-needed research on autism in Arabic-speaking populations. Additionally, its publication and dissemination could inspire the development of additional linguistically and culturally tailored diagnostic tools for autism and other neurodevelopmental disorders, not only in the Arab world but also in other regions with diverse populations. By addressing the global demand for culturally informed autism evaluation, ALADIN may represent an important step toward more effective neurobehavioral healthcare worldwide.
The ALADIN instrument has the potential to overcome many barriers to expeditiously identifying children with autism in Arabic-speaking LMICs. The short administration time, open access design and minimal training required make it suitable for administration in the primary care setting. The use of this tool has the potential to significantly improve the accurate identification of children with autism while addressing access and affordability issues for many families.
Declarations
Conflict of interests
The authors declare no conflict of interest pertaining to this research.
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