Unavailability of Screening Tool for Adults with Autism Spectrum Disorder: Indian Context

To the editor,

As a neurodevelopmental disorder, autism spectrum disorder (ASD) presents with “persistent deficits in social communication, social interaction, and restricted, repetitive patterns of behavior, interests, or activities”. ¹ In India, about 2.3 million children are affected with ASD. ² However, India lacks comprehensive screening tools covering all age groups, as existing tools only serve a minimum of 1.5 years to a maximum of 18 years of age.^3–5 Another recently developed parent-child social-emotional reciprocity questionnaire, i.e., the Nayak SER Questionnaire (NSERQ), is also meant for 3–10 years age. ⁶

Research indicates the existence of first-time reported cases of ASD in adults, ⁷ accentuated by ignorance and limited treatment access. Mental health professionals struggle with diagnosis due to classification systems focusing on childhood symptoms, for example, Diagnostic and Statistical Manual of Mental Disorders 5th edition (DSM-5). ¹ In the current scenario, professionals use the INCLEN Diagnostic Tool for Autism Spectrum Disorder (INDT-ASD) for diagnosis purposes for children aged 2–9 and the Indian Scale of Assessment of Autism (ISAA) for severity assessment purposes beyond 6 years of age. ⁸ If an adult with ASD seeks diagnosis at the hospital, the utilization of classification systems, for example, DSM-5 ¹ and INDT-ASD ⁸ is not suitable due to the age range. The ISAA tool ⁸ also cannot be employed in this context, as it has been designed for severity assessment. However, what is required is a diagnostic or screening tool prior to administering the severity tool, as detection is necessary before proceeding with severity assessment. In this scenario, mental health professionals also cannot use screening tools as the upper age limit for use is 18 years. ⁵ Therefore, screening ASD in adults is challenging due to lack of access to suitable assessment tools, problems in diagnostic classificatory systems, and a lack of trained professionals. Undetected ASD after age 18 shows a need for awareness and accessible screening tools by grassroots stakeholders, as existing tools are limited to health workers and not open to teachers or parents as only content validity of Nayak autism spectrum disorder has been evaluated. ⁴ But evolving autism definitions have left many adults newly identified with ASD. Although being diagnosed with a mental health condition is a human right, currently there is no specific tool developed for screening Indian adults with ASD. The available foreign-developed tools, for example, the Autism Behavior Checklist ⁹ and the Autism Screening Questionnaire (ASQ), ¹⁰ are inappropriate to use in India due to cross-cultural differences and their high cost.

The RPWD Act aims at equal rights. ¹¹ However, the present situation in India does not fully align with this principle, primarily due to the limited availability of screening tools for adults with ASD. Insufficient research on this specific age group further exacerbates the issue. Undetected cases miss the needed help due to poor detection, hindering timely interventions. Without proper diagnosis and certification, adults with ASD also may be ineligible for getting guardianship and various other benefits with regard to rights and entitlements, education, skill development and employment, social security, health, rehabilitation and recreation, etc. under government policies and laws. ¹¹ But there are hardly a few rehabilitation centers in India that provide services to adults with ASD, though adults with disabilities have the right to receive rehabilitation services, contingent upon the diagnosis of their disorder. However, if adults with ASD cases remain undetected, they cannot access appropriate rehabilitation services, which they are entitled to. Unsurprisingly, a significant portion of adults with ASD also live with their elderly parents, adding to an enormous burden on them. Adults with ASD who lack parental support end up homeless and wandering at large because of the absence of rehabilitation services. Even high-functioning adults with ASD can have problems dealing with unexpected challenges of daily life. In the absence of a protective net under the RPWD Act, they become unemployed. Hence, there should be mechanisms for reasonable accommodations for adults with ASD. This is dependent on the availability of better ASD screening tools for Indian adults, which could transform the above-mentioned current scenario in India.