Due to a dearth of systematic estimates, the prevalence of autism spectrum disorders (ASD) in India is a hotly contested topic. The majority of estimates come from studies on school-aged children, which show that over one crore Indians may be on the autism spectrum. However, there are significant cultural differences in diagnosing autism across nations, emphasising the importance of assessing the prevalence of autism spectrum disorders in the Indian setting.
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What exactly is autism?
- Autism is a neurodevelopmental condition that affects communication, social interaction, and behaviour. It is also known as Autism Spectrum condition (ASD). The term “spectrum disorder” refers to the fact that symptoms and severity can differ greatly between individuals.
- Autism symptoms include difficulties with social interactions, such as keeping eye contact or understanding nonverbal signals, delayed speech and language development, repetitive behaviors, and sensory sensitivities.
- Autism is thought to be caused by a combination of genetic and environmental factors, but the precise reason is unknown.
- Autism presently has no cure, but early interventions and therapies can help people with autism live more satisfying and independent lives.
Prevalence of Autism in India
- Autism is a worldwide problem that impacts people from all cultures, ethnicities, and socioeconomic backgrounds. However, systematic assessments of autism prevalence in India are lacking.
- Methos failed: Researchers tried to estimate prevalence through government hospitals, but due to the lack of central medical registries, this approach failed.
- Estimates are conservative: As a consequence, school-based assessments were used to estimate prevalence. Conservative figures place well over one crore Indians on the autism spectrum. This emphasises the importance of additional study and attention to address the prevalence of ASD in India.
Autism Spectrum Disorder Diagnosis:
- There are significant cultural variations in the diagnosis of autism spectrum disorder. The bulk of individuals with autism spectrum disorder in the United States and the United Kingdom are verbal, have an average or higher IQ, and attend mainstream schools.
- However, in India, the vast majority of individuals with autism also have intellectual disability and limited verbal ability. This disparity is caused by sociological variables such as access to suitable clinical expertise, inclusion in mainstream schools, and the availability of medical insurance coverage.
Challenges in Assessing Autism
- Autism spectrum disorder assessment is mainly behavioral, and the most commonly used autism assessment tools are not available in Indian languages.
- Indigenous autism screening tools difficulties: The creation of indigenous autism assessment tools has increased. Despite the advancement of these tools, comparing them across various assessment measures can be difficult.
India’s Demand and Supply
- Mental health workers are in short supply: The majority of autism assessment tools must be given by trained mental health professionals. However, India has a substantial shortage of mental health professionals, with less than 10,000 psychiatrists, the vast majority of whom are concentrated in major cities.
- Delays in interventions can be expensive for neurodevelopmental conditions like autism.
- The demand and supply gap must be addressed: The demand and supply gap cannot be addressed solely by specialists; parallel attempts to broaden the reach of diagnostic and intervention services by involving non-specialists are needed. Emerging evidence indicates that non-specialists can be involved in autism detection and intervention through digital technology and training programmes.
In the future: The Need for a Pan-India Program
- National autistic programme: The need of the hour is to create a national autism programme in India that connects researchers, clinicians, and service providers to end-users in the autism population.
- This programme must include three interconnected important components: assessment, intervention, and awareness.
- Research is required to create appropriate assessments and plan efficient implementation pathways.
- Intervention: The clinical and support service workforce must be expanded by training non-specialists so that a stepped-care model can be successfully implemented across the country.
- Large-scale initiatives must be launched to raise public awareness and reduce the stigma connected with autism and related disorders.
@the end
In India, there are difficulties in diagnosing and assessing autism, highlighting the need for a comprehensive and coordinated effort to resolve them. India can improve outcomes for those on the autism spectrum and reduce stigma associated with the condition by increasing the clinical and support service staff, training non-specialists, and creating appropriate assessments and interventions. Consultation with various stakeholders, with a main emphasis on end-users within the Indian autism community, is required to inform this national programme.
Source: https://www.sciencedirect.com/science/article/abs/pii/S1047279716301995