Introduction
Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects how people communicate and interact with others. ASD is diagnosed based on behavioral criteria, such as social communication difficulties, restricted interests, and repetitive behaviors. However, these criteria may not capture the full diversity and complexity of ASD across different cultures and contexts. In this paper, the authors review the current literature on how culture influences ASD diagnosis and highlight some of the challenges and implications for research and practice.
Cultural Variations in ASD Prevalence and Presentation
The prevalence of ASD varies widely across different regions and countries, ranging from 0.1% to 2.6%. Some of the factors that may contribute to this variation include differences in diagnostic criteria, assessment methods, service availability, awareness, and stigma. Moreover, the presentation of ASD symptoms may also differ across cultures, depending on the social norms, expectations, and values of each society. For example, some studies have found that children with ASD from collectivistic cultures, such as China and India, tend to show more social motivation and less social withdrawal than children with ASD from individualistic cultures, such as the US and the UK. Similarly, some cultural groups may view certain ASD behaviors, such as echolalia or special interests, as normal or acceptable, while others may consider them as abnormal or problematic.
Cultural Bias and Barriers in ASD Diagnosis
The diagnosis of ASD is largely based on standardized tools and criteria that were developed in Western countries, such as the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the Autism Diagnostic Observation Schedule (ADOS). However, these tools and criteria may not be valid or reliable for other cultural groups, as they may not reflect the cultural variations in ASD symptoms or the cultural preferences in communication styles. For instance, some studies have found that the ADOS may overdiagnose or underdiagnose ASD in children from non-Western cultures, depending on the language, gestures, eye contact, and social conventions of each culture. Furthermore, some cultural groups may face barriers to accessing ASD diagnosis and services, such as lack of awareness, stigma, discrimination, language difficulties, or mistrust of professionals. These barriers may result in delayed or missed diagnosis, underrepresentation in research, and unmet needs for support and intervention.
Recommendations for Improving ASD Diagnosis Across Cultures
The authors suggest several recommendations for improving the accuracy and equity of ASD diagnosis across cultures. These include:
- Developing and validating culturally appropriate and sensitive diagnostic tools and criteria that can capture the diversity and complexity of ASD across different contexts and populations.
- Providing training and guidance for professionals on how to recognize and address the cultural variations and biases in ASD diagnosis and assessment.
- Increasing the awareness and understanding of ASD among different cultural groups and reducing the stigma and discrimination associated with ASD.
- Enhancing the collaboration and communication between professionals, families, and communities from different cultural backgrounds and involving them in the diagnostic process and decision-making.
- Conducting more cross-cultural and longitudinal research on the epidemiology, etiology, and outcomes of ASD and ensuring the inclusion and representation of diverse cultural groups in ASD research.
Conclusion
ASD is a heterogeneous and multifaceted condition that is influenced by various biological and environmental factors, including culture. Culture affects how ASD is perceived, presented, diagnosed, and treated across different regions and countries. Therefore, it is important to acknowledge and address the cultural variations and challenges in ASD diagnosis and to develop more culturally appropriate and inclusive diagnostic tools and practices. This will help to improve the accuracy and equity of ASD diagnosis and to provide better support and services for individuals with ASD and their families from different cultural backgrounds.
Faq
How is ASD diagnosed in different countries and regions?
ASD is diagnosed in different countries and regions using various diagnostic tools and criteria, which may be based on international standards, such as the DSM or the ICD, or on local adaptations or developments, which may reflect the cultural variations and preferences of each country or region. For example, some countries, such as China, Japan, Korea, and Saudi Arabia, have developed or adapted their own diagnostic tools or criteria for ASD, such as the Chinese Autism Spectrum Rating Scale (CASRS), the Japanese Scale of Autism Spectrum Disorder (JS-ASD), the Korean Autism Diagnostic Schedule (K-ADS), and the Saudi Arabian Autism Diagnostic Observation Schedule (SA-ADOS).
How is ASD perceived and understood in different cultures and communities?
ASD is perceived and understood in different cultures and communities in various ways, depending on the cultural values, beliefs, norms, and practices of each culture or community. For example, some cultures or communities may view ASD as a medical condition, a developmental disorder, a mental illness, a genetic defect, a spiritual affliction, a divine gift, a natural variation, or a social construct. These different perceptions and understandings may affect how individuals with ASD and their families cope with and seek help for ASD.
How can professionals who are involved in ASD diagnosis improve their cultural competence and sensitivity?
Professionals who are involved in ASD diagnosis can improve their cultural competence and sensitivity in various ways, such as:
- Increasing their knowledge and awareness of the diversity and complexity of ASD and human cultures
- Developing their skills and attitudes to recognize and address the cultural variations and biases in ASD diagnosis and assessment
- Communicating and collaborating effectively with individuals with ASD and their families from different cultural backgrounds
- Seeking and using feedback and guidance from other professionals and experts who have cross-cultural experience and expertise
- Engaging in continuous learning and reflection on their own cultural assumptions and practices
How can professionals who are involved in ASD diagnosis collaborate and communicate with individuals with ASD and their families from different cultural backgrounds?
Professionals who are involved in ASD diagnosis can collaborate and communicate with individuals with ASD and their families from different cultural backgrounds in various ways, such as:
- Establishing rapport and trust with the individuals and their families by showing respect, empathy, and curiosity
- Using clear and simple language and avoiding jargon and technical terms
- Using interpreters or translators when necessary and ensuring their accuracy and reliability
- Using multiple sources and methods of information, such as observations, interviews, questionnaires, and standardized tests
- Involving the individuals and their families in the diagnostic process and decision-making and respecting their preferences and choices
How can professionals who are involved in ASD diagnosis evaluate and validate the diagnostic tools and criteria that they use for different cultural groups and contexts?
Professionals who are involved in ASD diagnosis can evaluate and validate the diagnostic tools and criteria that they use for different cultural groups and contexts in various ways, such as:
- Reviewing the existing literature and evidence on the validity and reliability of the diagnostic tools and criteria for different cultural groups and contexts
- Conducting cross-cultural studies and analyses on the performance and outcomes of the diagnostic tools and criteria for different cultural groups and contexts
- Adapting and modifying the diagnostic tools and criteria to account for the cultural variations and preferences of different cultural groups and contexts
- Developing and testing new diagnostic tools and criteria that are culturally appropriate and sensitive for different cultural groups and contexts
- Seeking and using feedback and guidance from other professionals and experts who have cross-cultural experience and expertise
How can professionals who are involved in ASD diagnosis contribute to and benefit from cross-cultural research on ASD diagnosis?
Professionals who are involved in ASD diagnosis can contribute to and benefit from cross-cultural research on ASD diagnosis in various ways, such as:
- Sharing and disseminating their knowledge and experience on ASD diagnosis across cultures and contexts
- Participating and engaging in cross-cultural research projects or initiatives that are related to ASD diagnosis
- Learning and applying new methods and measures for cross-cultural research on ASD diagnosis
- Accessing and utilizing new data and evidence on ASD diagnosis across cultures and contexts
- Collaborating and networking with other professionals and experts who have cross-cultural experience and expertise
How can cross-cultural research on ASD diagnosis inform and guide the development and implementation of policies and practices for ASD diagnosis and services?
Cross-cultural research on ASD diagnosis can inform and guide the development and implementation of policies and practices for ASD diagnosis and services in various ways, such as:
- Providing new data and evidence on the prevalence and presentation of ASD across different regions and countries
- Providing new data and evidence on the validity and reliability of diagnostic tools and criteria across different cultural groups and contexts
- Providing new data and evidence on the barriers and facilitators to accessing and utilizing ASD diagnosis and services across different cultural groups and contexts
- Providing new data and evidence on the needs and preferences of individuals with ASD and their families across different cultural groups and contexts
- Providing new data and evidence on the outcomes and impacts of ASD diagnosis and services across different cultural groups and contexts
How can cross-cultural research on ASD diagnosis promote the equity and inclusion of diverse cultural groups in ASD diagnosis and services?
Cross-cultural research on ASD diagnosis can promote the equity and inclusion of diverse cultural groups in ASD diagnosis and services in various ways, such as:
- Increasing the awareness and understanding of the diversity and complexity of ASD and human cultures among professionals, policy-makers, and the public
- Reducing the stigma and discrimination associated with ASD among different cultural groups and communities
- Addressing the structural and systemic barriers that may prevent or limit the access and utilization of ASD diagnosis and services by different cultural groups and communities
- Ensuring the availability and accessibility of culturally appropriate and sensitive diagnostic tools and practices for different cultural groups and contexts
- Ensuring the inclusion and representation of diverse cultural groups in ASD research and policy.
Source:
https://journals.sagepub.com/doi/full/10.1177/27546330241226811