Study shows vast discrepancies in autism diagnoses in US, Indian subcontinent
LAWRENCE — The United States and countries like Pakistan, India and Bangladesh are quite different culturally. But the people residing in those nations are not so different that Americans would have double the rates of autism spectrum disorder. Yet, international statistics show that is the case, and a new study from the University of Kansas finds that the glaring differences in diagnoses are largely due to cultural biases and a lack of tools available to doctors, educators and families in the Indian subcontinent.
Dr. Nida Taufiq is a pediatrician working in Pakistan. With an 11-year-old son with ASD and as a doctor who would sometimes see nearly 100 patients a day, she was acutely aware of the lack of diagnostic tools in her nation. Taufiq recently completed the KU graduate certificate program in autism to learn more about diagnostic and screening tools for ASD, as well as to better serve children and families. The autism program is one of KU’s special education online programs, which are ranked No. 1 by U.S. News & World Report.
Taufiq and Glennda McKeithan, associate teaching professor in the KU Department of Special Education, conducted a study examining screening and diagnostic practices for ASD in the Indian subcontinent, one of the most populous regions in the world. They found that the advanced diagnostic and screening tools used in the United States are not commonly available in India, Pakistan and Bangladesh, and that cultural biases may further inhibit diagnosis and support.
“From my experience as a pediatrician, I know most here are not familiar with the screening and diagnostic tools for ASD,” Taufiq said of her work in Pakistan. “I completed the KU program because once diagnoses are made, there are very few supports that are available. My son is now doing very well thanks to the supports I learned about in the KU program.”
Taufiq noted that the Western "gold standard" tools are expensive, time intensive and often not available in low- and middle-income countries. The DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) is the most widely used, but when used in isolation it only gives a general overview. Most of the diagnoses in India and Pakistan are made without supplementing DSM-5 with the most advanced tools, she said.
The authors conducted a systematic literature search, then screened 554 relevant research articles and analyzed 12 studies on ASD to learn more about screening and diagnostics in the Indian subcontinent. The studies, 11 from India and one from Pakistan, show the lack of availability of the most effective tools, coupled with cultural biases likely contribute to the disparity in numbers of diagnoses when compared to the United States and result in countless children and families not getting supports that could help them.
“Centers for Disease Control reports used to show that more children from predominantly white, higher-income families were more likely to be diagnosed with ASD,” McKeithan said. “Thanks to the improved awareness of ASD as well as the accessibility to diagnostic screening and assessment tools, that is not the case anymore. The research shows that lower-income countries have lower rates. We know the differences cannot be as great as the numbers suggest, and the CDC says the rates of ASD are likely higher.”
The CDC estimates that 1 in 36 American children have ASD. The World Health Organization estimates the rate to be 1 in 100.
Taufiq and McKeithan point out that cultural issues such as high poverty rates exacerbate the issue, leading to a failure to diagnose, misdiagnosis or delay in diagnosis and subsequently, lack of access to appropriate supports. Further, families in low- and middle-income countries may tend to accept children as they are and not focus on helping them build skills needed for independence in a similar fashion to the United States. The issue may be compounded by embarrassment, shame or negative community perceptions of families that have members with disabilities.
The authors point out that cultural differences only paint a partial picture. The study showed very few of the diagnostic tools used in the West have been translated to Hindi, Urdu or Bengali, the most spoken languages in the Indian subcontinent. Taufiq said that while the DSM-5 is routinely used, without supplementing it with standardized tools like ADI-R (Autism Diagnostic Interview-Revised) and/or ADOS-2 (Autism Diagnostic Observation Schedule), the higher end of the spectrum is generally missed.
Furthermore, families in the region often do not seek such screening for children until they are 4 or 5 years old and nonverbal. The American Academy of Pediatrics recommends universal screening for autism at 18 and 24 months.
“If you have a child that is verbal, you’re probably not going to admit anything is wrong,” Taufiq said of Indian subcontinent families. “Culturally, if you can work and support a family, it is not considered a disability. It becomes a quality-of-life issue.”
“The studies we reviewed agreed there is a delay in diagnosis,” McKeithan said. “Early recognition and intervention are linked to positive outcomes later in life.”
After completion of the KU program, Taufiq has started helping more families with children on the spectrum to better understand the diagnosis and become aware of appropriate evidence-based practices. She has plans to share what she has learned with other doctors as well as with medical schools in Pakistan. The discrepancies in prevalence rates mean untold numbers of children and families are not getting support that could improve education and quality of life, the authors wrote. They presented their research at the North Carolina Council for Exceptional Children annual conference, and the study is currently in peer review.
“Governments and the international community must work together to address this issue. Indigenous translated versions need to be available, and doctors have to be trained on them,” Taufiq said.
“The development of culturally appropriate and cost-effective tools can help to improve the identification and treatment of ASD in these regions, leading to better outcomes and a reduction in the global burden of this condition,” the authors wrote in the study. “By investing in research and resources to address these gaps, policymakers and stakeholders can help to ensure that individuals with ASD in developing countries receive the care and support they need to reach their full potential.”
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