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Why is India not diagnosing Autism?

April 01, 2022 | Aditi Vasudevan

Every child deserves the best start in life. This means providing them with resources that cater to what they need. A child with an aptitude for music may not do as well with only a paintbrush in her hand. Every child has different needs, and it is our societal duty to identify and provide them. In such a scenario, identification of developmental disorders, such as Autism Spectrum Disorder (ASD), is vital. The diagnoses of intellectual and developmental disorders have grown vastly in the last few decades. However, studies indicate that many people have slipped under the radar.

Autism was first used to describe a subset of schizophrenic patients who appeared reclusive. Over the decades, medical research has progressively refined the understanding of autism as studies have thrown up new symptoms and identified mental development as the main cause of autism. In 2013, Diagnostic and Statistical Manual of Mental Disorders (DSM) folded other conditions like Asperger’s syndrome into ASD. DSM-V defines ASD as persistent issues in social interaction and restricted and repetitive patterns of behaviour that cause impairment in various areas of functioning. ASD is a developmental disorder, wherein symptoms typically manifest in the early development period of a person’s life.

The diagnosis of ASD is not very clear-cut. Symptoms manifest in myriad ways, and severity is also not pre-determined, which makes identification difficult. Medical professionals, therefore, become instrumental in identifying and diagnosing ASD. Moreover, the choice of test used can also greatly affect the resulting diagnosis.

ASD appears to be much less common in India, as compared to first-world nations like the USA. The US’ CDC reported that one in forty-four children had autism in 2021. On the other hand, data on the prevalence of autism in India is lower, albeit ambiguous. The 2011 survey noted that 1.3% of people in India have a neurological condition. However, non-governmental research conducted after that finds this percentage to be extremely inaccurate. A 2017 study by INCLEN Trust International found that the number was, conservatively, at least ten times higher than the government estimate.

The main cause for this disparity is the lack of official diagnostic protocol. While the government survey relied on medical data, the INCLEN study assessed children for ASD with the INDT-ASD test. We can therefore conclude that most people on the autism spectrum remain undiagnosed in India. But why?

Parental ignorance and misinformation on child development is an important factor. Many parents brush off important red flags that could indicate ASD. Instead, they attribute signs like refusing eye contact or withdrawn social behaviour to shyness. More obvious sensory issues exhibited as children grow up are attributed to poor manners, playfulness or disinterest in education. There is substantial, and widespread denial to acknowledge developmental issues with children.

This is partly due to inadequate awareness about child development milestones. They rely on traditional oral knowledge that is often inaccurate. Platitudes like “Boys develop slower than girls” or “The child is just developing slowly” are often used to dismiss concerns. Indian society prizes a traditional source of authority more than experts. Parents often rely on family or local elders for advice, which is often unscientific or inaccurate.

Parents are often extremely concerned about prevalent social prejudices and stigma, especially in rural India. Mothers, especially, are accused of parental neglect, which has resulted in the child’s neuro-divergence. This was based on an out dated medical theory of “refrigerator mothers”, which has never quit the public perception of ASD.

Religious superstition contributes to the stigma. Many believe that autism is caused by supernatural visitations or curses. This perception is only strengthened by various god men and trusted religious authorities. Given the prevalence of such thought, parents seek aid from religious figures, often without medical diagnoses. Developmental disorders then become a result of curses or a lack of faith. As such, parents may choose to perform religious ceremonies rather than search for medical advice. Popular Hindu philosophies such as Karma, declare that any disorder or condition is retribution for past actions. This adds to the negative attitudes towards people with ASD. Many of these beliefs remain so entrenched that even out-migrants retain such superstitious beliefs.

The strength of societal prejudices also affects parents’ ability to get an official diagnosis. Quacks are commonplace. Uncertified doctors are often cheaper and easier to access, especially for parents who may lack awareness on the importance of certified doctors. Such doctors may also make grandiose and unverified claims to cure ASD, rather than treat it. These promises also make them more appealing.

Moreover, misdiagnoses are also very common. Many children with developmental issues are often shepherded into specific treatment such as speech therapy, while doctors hesitate to diagnose ASD, which can be reliably tested only by the age of two.

Children can only live up to their potential and grow to be their best, if they are aided appropriately. People on the spectrum should have access to resources that help them. Therefore, the low rates of diagnoses in India, as compared to prevalence of ASD, must be remedied. Parents must be better educated on child developmental milestones, and encouraged to seek medical advice for any perceived problems in children’s growth and development.

You can read about red flags in child development in Amrit Foundation of India’s Baby Milestones and Red Flag tracker here.

About the Author: Aditi Vasudevan is a public policy student at NLSIU, Bangalore and an intern with Amrit Foundation of India. She is passionate about child development and education.