How do we determine who has autism, and is this the same around the world?
As we mark World Autism Awareness Day on April 2, we — a developmental pediatrician, developmental scientist, and anthropologist — suggest approaching these questions with a broader lens, one that acknowledges that the very definition of autism is powerfully influenced by culture.
Looking first at the United States, questions about best practices for diagnosing autism emerge very early in our children’s lives. For example, the American Academy of Pediatrics recommends screening for autism at 18 and 24 months of age. But then the United States Preventative Services Task Force recently released a statement that there is not even enough evidence to assess the benefits of screening a young child for autism when no parental or clinician concerns have been raised.
Thus, they left decision making to clinicians and families, creating a gray area for concerned parents and clinicians as they work to support young children. In response, the American Academy of Pediatrics calls for more research in the area but also continued screening for autism, which has substantial evidence to support its use. To not screen for autism has significant consequences for early identification and intervention.
Because there is no single laboratory test for autism, diagnosis relies on a range of observed behaviors. For very young children, diagnostic screenings are based on parental perceptions of behaviors, including their child’s tendency to establish eye contact, to form relationships with others, to reach milestones in language development, and to display certain repetitive motor and play behaviors.
If you think about these diagnostic criteria for a moment, what becomes clear is that they make sense if we adopt a particular European-American expectation of what is ‘normal’. But these criteria are applied widely across a range of very different countries and cultural groups, even within the United States. This can be dangerous because the constellation of behaviors that physicians, educators and policy-makers tend to describe as autism may well be seen in a different light in different parts of the world.
Take eye contact as an example. In most European-American families, children are encouraged to make eye contact with others, but this is not universal. In other cultures or communities, establishing direct eye contact is considered a sign of disrespect, especially in children interacting with adults. Dr. Sandra Waxman, whose research has taken her to diverse communities in the United States and abroad, is convinced that using eye contact as a diagnostic criterion for autism is a matter of considerable concern. She’s seen first-hand that in native communities in the United States, Central and South America, children are much less likely to establish eye contact with adults than are children of European descent.
In southern Egypt, Dr. Jessica Winegar has similarly found that young children interacting with authority figures, such as doctors, frequently avert their gaze out of what is called “shyness” in the face of authority.
Another behavior that is used in diagnosing autism is how a child interacts and plays with an unfamiliar adult. But this, too, varies according to culture. In many communities, extending from the United States to parts of rural Kenya, children rarely play with adults. In cultural contexts like this, children may be wary when an unfamiliar adult invites them to play.
An additional tool in diagnosing autism is language development, including the age when children first begin to say words or to speak in phrases. Here, diagnosticians are on somewhat firmer footing since major milestones in language acquisition appear to be consistent across languages and communities. But it is important to bear in mind that children may be reluctant to talk directly to an adult, especially if they are from a different cultural group. Dr. Sarah Bauer has undertaken autism-specific medical education outreach, including extensive teaching and discussions with families, therapists, and physicians in the United States and abroad in Eastern and Southern Europe. She’s learned that these kinds of cultural differences are why it is crucial to work closely with people from the child’s own cultural community, people who understand intimately the expectations within that community for what autism means to them.
To be sure, the deepest concerns facing families of children with autism transcend cultural boundaries and may be universal. Parents want to understand when their children hurt and when they experience joy; they want their children to have friends and live productive independent lives as adults.
But even so, cultural perspective matters. It matters in assigning a diagnosis; it matters in how families understand their child’s behaviors and how they approach the possibility of intervention. Diagnosis matters because it opens doors to services and pathways to intervention.
There is no doubt that any child’s developmental path is shaped by how they are viewed by the people around them. Parents’ perceptions of autism color the ways in which they present their children within extended networks of friends and family. These perceptions color parents’ experience upon receiving an autism diagnosis and their likelihood of moving forward with recommended services. And for some families, it may not be autism to them.
So we suggest that as we continue to identify who has autism, we adopt a more inclusive, more global lens, moving beyond European-American cultural expectations of communication and behavior. After all, the behaviors that weigh most heavily in diagnosing autism are precisely the behaviors that vary so much across cultures and across individuals.
The authors participate in The OpEd Project’s NU Public Voices Fellowship.