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Understanding Autism Across Cultures: Have We Reached Clarity?

The Evolution of Autism Spectrum disorders (ASD) 

The importance and evolution of understanding Autism Spectrum Disorder (ASD) extends beyond India to countries worldwide, where research and awareness have advanced considerably over the years. In nations such as the United States, the United Kingdom, and many others, ASD has garnered significant attention due to its increasing prevalence and impact on individuals and families.

The evolution of what we know today as Autism Spectrum Disorders (ASD) is expansive and diverse. For those in a clinical setup, ASD is a major component of clinical practice and one of the major disorders underrepresented and researched in India, unlike more developed nations like the USA and UK.. Culturally, the treatment and policies for ASD have remained equal. However, access to these treatments and the extent to which it is socially and culturally accepted vary- owing to stigma, acceptance, and un-tailored interventions for those with ASD. Most treatment interventions and assessment tools are not designed for an Indian population and do not take into consideration the income level, family setups and daily living style such as that of a culturally diverse country like India. As a result, countries outside of India have seen significant progress in addressing the multifaceted challenges associated with ASD, paving the way for more inclusive and supportive societies for individuals across the autism spectrum.

Cultural differences in ASD 

Recent research has shed light on the challenges individuals and families face in accessing resources and care for Autism Spectrum Disorder (ASD). Families encounter barriers such as lack of resources, limited access to care, and a deficiency in social support. These obstacles are particularly evident in regions like India, where the social and cultural structure complicates the landscape of ASD research and treatment. Despite the evolution of understanding ASD globally, deep-rooted theories often prove culturally insensitive in diverse contexts. The lack of resources and supportive social structures further exacerbate the situation in the Indian landscape. 

Gender disparity has been a major issue in cities within India. Keeping this in mind, the access to resources for those diagnosed with ASD and multifaceted and overlays those of social norms and how each gender is treated within a community. Traditional views often lead to differential treatment based on gender, with girls facing particular neglect in diagnosis and treatment. This intersects with broader cultural norms, perpetuating stigma and hindering inclusive diagnostic practices.

The empathizing-systemizing theory by Baron-Cohen also tries to state that there are cognitive differences between males and females that could be further applied to individuals diagnosed with Autism. The extreme male brain theory suggests that men are prone to be more systematic than empathetic; hence the skewed gender ratio in diagnoses of autism among boys and men. However, this may not be true for collectivistic cultures such as India. Tight-knit communities and the general shame, stigma, and taboo of autistic individuals do not pave the way for diagnosis. Culturally and psychologically, there are many more barriers to overcome. The male brain theory could be better explained in an Indian sub-context as part of the patriarchal views. In modern times, girls with autism although rarely diagnosed are less likely to seek diagnosis or treatment than their male counterparts.  Patriarchal views such as a preference for boys and leaving lesser resources for girls is common especially when it comes to medical services. On the flip side, it is true that early detection, diagnosis and treatment are on the rise but in urban high income economic groups. 

Other studies also reflect this, showing differential diagnostic rates and the recent influx of a different set of traits for females diagnosed with ASD. A recent study has delved into the intersection of gender and autism diagnosis, highlighting the influence of cultural contexts on these dynamics. Gender norms and expectations also seem to have a hand in this with a particular gender being less diagnosed, and less accepted and how it impacts the access to resources in a collectivistic culture like India’s. These studies emphasize the need for culturally nuanced perspectives on gender and autism, challenging stereotypical notions and promoting inclusive diagnostic practices.

Challenges and Opportunities in Addressing Autism in Diverse Sociocultural Contexts

Recent research has highlighted the complex challenges with limited resources and the societal stigma surrounding those diagnosed with ASD. Families face barriers such as lack of resources, lack of access to care, and no social support. Having a rich cultural background is great, but it also has a downside. Sometimes, there are strict rules and negative labels that are deeply ingrained in the culture. These rules can be hard to break, especially for people who don't have the same opportunities as those in Western countries.

Culturally adapted interventions too do not hold high promise in developing nations like India. The first step in nations like India would be to destigmatize and widespread psychoeducation. With widespread conversations about the disorder and treatment alike as well as the advent of technology in India, a more widespread acceptance to start with would be tremendous. Policies for better healthcare and social support, similar to those of many developing and developed countries as well as inclusion and not just diversity policies at workplaces would make a significant difference.  In addressing these challenges, recent research underscores the critical need for policy measures and resource allocation.

 Limited resources and societal stigma continue to impede progress, necessitating destigmatization efforts and widespread psychoeducation. Policy interventions aimed at improving healthcare and social support, alongside inclusive workplace policies, are crucial steps forward. However, the current landscape highlights the inadequacy of existing approaches, underscoring the urgent need for policy measures to foster greater awareness, acceptance, and support for individuals and families affected by ASD may be all-consuming and the imminent need for policy measures from central agencies seems like a gaping hole.  These findings underscore the urgent need for policy measures and resource allocation to address the multifaceted challenges of ASD within diverse cultural landscapes. 

Vaishali Ramesh