Culture and social norms of any community or a country traditions can have long-reaching effects on everything from sexuality and socially acceptable behavior to how a community deals with handling individuals with autism. After all, while in a city like New York City there is a general attitude of tolerance and countless resources and groups set up to help educate others about autism, in a small rural town in the Midwest, autism can have a certain stigma to it and thus it is our goal to better understand how culture shapes our perception of autism.
Culture plays a large role in parents’ expectations regarding developmental milestones, such as speaking their first words or phrases, toilet training, and walking or crawling. Since cultural factors are intertwined with thoughts and behaviors, they may assume a major role in the way families think about deviations in their children’s development.
Specific to autism, studies have found that Indian parents are more likely to identify delays in socialization than delays in speech, while American families are more likely to detect general developmental delays or regression in language skills rather than social deficits. In fact, one study found that parents of children with autism in the United States did not provide any information specific to their child’s social interactions unless probed by their clinician.
Another way in which culture can effect whether or how a child is diagnosed with autism can be due to whether a child is a native English speaker or not.
Children from non-English-speaking families are less likely to be identified for screening and evaluation, and are often diagnosed at later ages than children whose parents are proficient in English. To ensure that these children have access to the early screening and the intensive interventions that predict better long-term outcomes, clinicians need to understand the important cultural nuances and proceed in that context.
Concepts such as culturally valued behaviors, stigma attached to disability, and the use of language can create barriers to identification and treatment. On top of this, providers may lack the knowledge and skills needed to discuss developmental concerns with families from different cultural backgrounds.
To overcome such cultural barriers when assessing and diagnosing autism, clinicians should initiate lines of questioning regarding both socialization and communication if parents bring up concerns in one of these areas. It also means that, while parental concerns are often highly predictive of developmental delay, clinicians cannot wait for parents to bring up concerns, but must initiate screening themselves.
Even if parents’ recognize the symptoms of autism, there may be cultural differences in to what they attribute them. For example, a child’s failure to respond to parental direction may be interpreted as “willfulness” and other unusual behaviors as falling within the bounds of normalcy. For example, Asian/Pacific Islander and African American parents are less likely than white parents to agree with teachers that their children’s behavior is indicative of an underlying disorder. Clinicians may have to work with parents to help them understand that symptoms are indicative of an underlying pathology that can benefit from treatment.
Ultimately, the most important weapon that clinicians or those providing treatment can utilize when treating a child with autism is opening clear and effective lines with parents. After all, even more than culture, parents can have the greatest influence on how a child develops and thus, if a doctor is able to jump over cultural hurdles to better educate parents, they are then that much more prepared and able to care for their child with autism.