Autism, though a well-known concept that has been around for about a century, is still a relatively new term for some regions of the world – namely, Eastern Asia. In fact, it was not recognized by researchers until the 1980s in China, merely 40 years ago. Today, there is still a gap between the understanding of autism between China and other Eastern Asian countries and more developed Western countries such as the United States; the disorder is widely under-diagnosed in the former and even when it is recognized, there is still a scarcity of resources for helping autistic individuals.
SOLVING THE MYSTERY OF UNDER-DIAGNOSIS
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It is important for families to recognize autism in order to best support their child’s needs.
Why is it that despite the prevalence of autism and the importance of its awareness, ASD is so widely under-diagnosed in Eastern Asian countries? One explanation is that Asian individuals define autism differently: compared to those of Western countries, people in Asia are more likely to view autism as an intellectual disability. In fact, one study shows that while 25% of parents in the United States considered their child to differ than neurotypical children in intellect, whereas 70% of Japanese parents said the same. Thus, because of perceived difference in intelligence condition, it is common for Asian health care workers to misdiagnose autism as “mental retardation”. Asian parents were also more likely to state that their child had a “developmental delay or communication problem” or “no problem at all” when compared to parents from the Arab world or North America, who mentioned autistic traits. Based on this information, one may infer that Asian parents view autism as a curable medical condition, or one that will fade with time, when contrasted to mental disabilities and genetic disorders, for which there is no treatment. Furthermore, Asian parents were less likely to mention autistic traits, suggesting low awareness or a different perception of the term.
Another explanation for under-diagnosis is the stigma surrounding the concept of autism. Asian parents of autistic children report significantly higher levels of stress when compared to mental disabilities such as cerebral palsy and genetic disorders. Chinese parents in particular feel more stress and stigma, as they are found to focus more on their social status and identity. An autistic child means that all members of the family are less suitable for marriage and more likely to be socially shunned. Getting diagnosed with autism is shameful to the point where families will do almost anything to avoid it. In South Korea, the stigma is so intense that health care professionals purposefully misdiagnose autism as reactive detachment disorder, which refers to social withdrawal caused by parental abuse. This diagnosis is easier for the family to bear because they can take the bullet and protect the family’s image better.
A PREDICTION FOR THE FUTURE: PROMISING CHANGES
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The Angels Walk for Autism is an annual advocacy event that promotes awareness.
Although the current perspective in Eastern Asia is that autism is misunderstood and wrongly shamed, there are signs of change regarding awareness of the topic. More people are becoming more knowledgeable about signs of autism and methods of treatment. In fact, the overall reported prevalence of ASD in Asia is higher than previously reported, and screening measures such as the Chinese Autism Behavior Scale (CABS) and the Autism Behavior Checklist (ABC) are gaining recognition and usage. I believe that with increased awareness and knowledge about autism, the stigma surrounding it will gradually fade, and new knowledge and treatment methods will be discovered, predicting promising changes in the near future regarding ASD in Eastern Asia.
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Blue ribbons worn in China for Autism Awareness Day.
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