Autism Across Cultures: How Cultural Norms Shape Diagnosis and Experience

Overview: This article explores how autism symptoms may differ by culture, how those symptoms impact people in different cultures in different ways, how different communities view autism, and how assessment may be skewed by cultural differences.

Introduction

Popular culture too often erroneously presents autism as a homogeneous disorder of the smart, white, cis-male. Prime examples are the popular characters played by Dustin Hoffman in Rain Man and Jim Parsons’ Sheldon in The Big Bang Theory. Similar to Hollywood’s skewed depictions, most autism research was historically conducted in wealthy, primarily Caucasian environments. This has resulted in a biased understanding of autism and led many people to believe that individuals on the autism spectrum are primarily quirky white males who love trains and Star Wars. This assumption is not only wrong but can be an impediment to diagnosis and treatment for individuals outside of the stereotype.

It is incumbent on individuals, families, and care providers to break through stereotypes and understand that cultural differences impact autism symptoms, assessment, and care. This article is not an exhaustive analysis of all cultural differences, but rather a primer on the patterns in different presentations, assessments, and understandings of the diagnosis across cultures.

Differences in Symptoms by Culture

Autism is most commonly diagnosed using the Diagnostic and Statistical Manual of Mental Health Disorders (DSM) or the International Classification of Diseases (ICD)*. These tomes were developed in the United States and Europe respectively, and they contain the current scientific definitions and diagnostic criteria that form the western understanding of most mental health and health disorders, including autism. Not every culture has adopted the same practices and standards as these western monoliths, and the differences may have a profound impact on the understanding of autism in different areas of the world.

Although social deficits are a significant component of any autism diagnosis, it is also true that social norms and practices differ wildly throughout the world. For instance, in China it is considered impolite for children to make eye contact with their elders. Therefore, a lack of eye contact is not considered abnormal or symptomatic of a disorder (Zhang, Wheeler & Richey, 2006). In contrast, in the Western world a pattern of avoidant eye contact is unusual and often indicative of autism symptoms. It would thus be inappropriate to compare the eye contact behaviors of a child raised in China to that of a child living in America with western social practices. To obtain fair and accurate diagnoses it is imperative that a child’s behaviors be compared to the behaviors of others from similar cultural communities. An awareness of social norms is essential to determine if a behavior deviates in a way that indicates an autism diagnosis or if it is merely a behavior that varies from Western norms but is otherwise typical behavior in that person’s culture.

We know that there are worldwide differences with verbal communication and social interactions. In Ethiopia it is expected that people greet one another in ritualized and highly practiced routines. The result of these cultural standards is that most young Ethiopians, whether or not they are on the autism spectrum, will be quite adept at greeting and saying goodbye to one another (Hoekstra, 2018). An autistic child demonstrating a high level of social skill in a different culture might not be considered for an autism diagnosis due to the learned ability to adroitly greet others. Again, like the eye contact example above, the key to assessing symptoms within these social norms is to compare individuals to the culture and community in which they were raised and live, and not to the overwhelmingly western communities that produced the standards established in the DSM and ICD.

Interestingly, even seemingly non-social symptoms vary widely across cultures. A young person in a western country would likely set off autism alarms for being overly focused on certain objects and having a restricted range of interests. However, this behavioral pattern is rarely found in young people diagnosed with autism in Nigeria (Bello-Mojeed, et al., 2017), perhaps because of the reduced material focus within Nigerian culture. Cultural and ethnic behavioral differences are also prevalent within the United States, as is evident by how Latinx autistic people in the United States have significantly lower rates of restricted and repetitive behaviors than their non-Latinx autistic peers (Magaña & Smith, 2013). These differences tell us that even slight community changes in the same larger culture may result in different autistic behaviors. Once again, an awareness of different cultural norms is essential in procuring an accurate autism diagnosis.

A final difference in symptom presentation that demonstrates the power of culture is the practice of imaginative play. A common assessment point for autism in western cultures is whether a child can engage in imaginative play with others. However, in many African countries, parents report significantly less imaginative play for autistic and non-autistic kids alike (Smith et al., 2017), suggesting that imaginative play is an unreliable measure in their cultures. Indeed, children in India, Kenya, and Mexico are found to engage in significantly less make-believe play than their American peers, regardless of whether or not they have an autism diagnosis (Edwards, 2000). This makes the use of imagination an unreliable assessment point when comparing a young person from India or Mexico to the standards of imaginative play in the United States.

The critical take away from this research is that autism symptoms need to be assessed in comparison to the community where the individual lives. Assuming western standards when determining the presence or absence of symptoms is likely to result in misdiagnosis and do a profound disservice to entire communities.

Differences in Impact by Culture

In order for an individual to be diagnosed as autistic using the DSM the autism symptoms must have a significant impact on daily functioning. What is a “significant impact on daily functioning” may vary widely from culture to culture due to the variance of behavioral norms, daily demands, and family structures. An awareness of the differing standards is critical to culturally informed autism diagnosis and treatment.

Much of the contemporary research on autism’s varying impact by culture can be understood by assessing China and the Chinese people’s treatment of the diagnosis. Doctors around the world expect children to say their first words around the one-year mark, and significant delays beyond that timeframe would likely prompt a western doctor to recommend assessment for potential developmental disorders such as autism. In China, however, speech delays are historically associated with increased intelligence (Sun et al., 2013), and Chinese parents are less likely to seek assessment and medical intervention for a non-verbal toddler. In fact, the average Chinese parent first reports autism concerns for children between 29 and 31 months of age (Tait et al., 2016) compared to the average western parents who first report autism concerns of children between 14 and 19 months of age (Matheis et al., 2017). This discrepancy is likely explained by the perceived impact of the autism symptoms. Western parents generally expect children to play with family members and otherwise actively engage in the family, whereas Chinese parents may expect children to play amongst themselves and remain quiet within the household. The latter behavior is common for children with autism but less noticeable in the culture where it is an expected behavior as opposed to one in which it is not. Hence, the differences in the age when the autism symptoms are first noticed.

Familial role and childhood expectations are not the sole reasons why autism may have a different impact in different cultures. Consider the social and vocational demands of a young person in Shanghai or New York City and compare them to a young person in rural Mongolia or a farming community in Kansas. Autistic people in urban settings may have larger class sizes in school, more social demands in daily living, and complex transportation systems to navigate whenever they leave the house, while their rural peers may have smaller class sizes, limited social demands, and more straight-forward daily routines. One study found that autistic people in Taipei were more likely to stay home to avoid socializing and having to deal with the stress of daily life than autistic people in rural Australia (Chen et al., 2017). This urban/rural divide, like other cultural variations, can significantly alter the impact of autism symptoms on daily living.

It is clear that because autism is in part a social disorder, the condition may have significantly different effects on people based on the cultures, social demands, and the daily expectations that they experience. It is therefore critical that assessment and treatment consider an individual’s culture and social situation to ensure the most accurate assessment and most relevant treatment.

Perception of Autism by Culture

Communities around the world vary widely in the ways that they approach health care, including the assessment and treatment of autism. While most western countries have consistent views of the causes of, and treatments for, autism, the same is not true in many other countries around the world. This can have a profound impact on the well-being of autistic people in those communities – for the better or worse.

Myriad cultures treat autism with skepticism or worse. Some coastal Kenyan communities believe that autism is the result of a curse, a sin, or a punishment from God (Gona Joseph et al., 2015). Other African countries believe autism is a curse or the result of witchcraft (Tilahun, 2016). These beliefs typically lead to autistic people being shunned, mocked, or isolated from their community, which can have negative impacts on the well-being of the autistic individual and their families. Unfortunately, the mistreatment of autistic individuals is not isolated to African countries. It is estimated that 67% of autistic children are bullied at some point in their life. While the occurrence of bullying is less in Western cultures that celebrate individuality (Park et al., 2020), even a slight negative cultural belief can have a large negative impact on the well-being of autistic individuals.

Interestingly, not all cultural variants are negative. Some cultures celebrate autism as a condition that provides a unique opportunity to experience life. In Pakistan it is common for people to see autism as a gift from Allah. An autistic individual provides a unique perspective within the community as well as an opportunity for people to prove their ability to care for someone in need (Minhas et al., 2015). This belief can result in better care and support for autistic individuals and their families. American culture, especially among teenagers, is increasingly supportive of autism. Roy Grinker (2020) argues that there is a shift in the capitalistic value of autism that many brands and companies are taking advantage of. One need not look hard to find a television show or movie with an autistic individual to see how the entertainment industry is capitalizing off the disorder and coincidentally shifting cultural understanding and tolerance of the condition. Even if the underlying goal is capitalism, there is implicit value to the “mainstreaming” of autism in that it will hopefully result in better understanding and care for autistic individuals.

Culturally Biased Assessment

Assessments for autism vary widely, but they all have the same basic goal of seeking to understand long-term social and behavioral patterns to determine whether someone qualifies for the diagnosis. At this point it is already clear that most assessment tools were created in the United States and Europe. Given the cultural variation in social patterns identified above it is no surprise that some of these assessments are less accurate in different cultures. For example, the Autism Spectrum Quotient, a test that is commonly used to diagnose young people with autism, has been found to be less reliable in Japan, Malaysia, and India (Carruthers et al., 2018) due to their differing social expectations. Cultural variation in-and-of-itself does not necessarily make an assessment less valid, but it does highlight the necessity of a culturally informed assessor. For a more in-depth discussion on assessment, please refer to the ALL article on psychological testing.

On a final note, it must be understood that a large roadblock to proper autism assessment is cost and complexity. A routine assessment can cost thousands of dollars and require the navigation of complex mental health systems and insurance red tape. The result being that psychological testing becomes a luxury out of reach to too many people, and a large percentage of low-income individuals and communities go undiagnosed and untreated for autism. Tragically, it is not just a lack of funding but often also a complete lack of resources for autistic individuals. Many countries have little or no mental health care systems and limited access to autism diagnostic tests. The CDC has shown that autism is a diagnosis that occurs across all socioeconomic statuses, so the gap in accessible assessment leaves many autistic people without the diagnosis and care that they deserve and may desperately need. 


Conclusion

Contrary to popular-cultural portrayals, Autism is a dynamic and unique disorder. It is essential for all citizens of our shared world to understand that culture can skew the symptoms and impact of an autistic disorder as well as the assessment process for the disorder. Research, common sense, and compassion tell us that an autistic individual is best diagnosed and supported when they are understood within their own unique cultural context. Without this understanding too many individuals are deprived of the care and support needed to live their best life.

References

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