- Prelims: Current events of national importance(Different social service Schemes, NFHS, Autism, Rights of persons with disabilities act.,2016, digital India, ASHA etc)
- Mains GS Paper II & III: Social empowerment, development and management of social sectors/services etc.
ARTICLE HIGHLIGHTS
- India lacks a central medical registry to estimate the prevalence of autism.
- It has been successfully used in some other countries to estimate the prevalence of autism.
INSIGHTS ON THE ISSUE
Context
Autism Spectrum Disorder (ASD):
- ASD refers to a range of conditions characterized by some degree of impaired social behavior, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively.
- It is a complex brain development disability which makes itself visible during the first 3 years of a person’s life.
- It is not mental retardation as people with autism may show excellent skills in spheres like art,music, writing etc.
- The level of intellectual functioning in individuals with ASDs is extremely variable, extending from profound impairment to superior levels.
Causes:
- Environmental
- Genetic factors.
Signs and Symptoms:
- Difficulty with social communication and interaction, restricted interests, and repetitive behaviors.
Cure:
- Autism is not curable, but its symptoms can be addressed with appropriate interventions like:
- evidence-based psychosocial interventions
- behavioral treatment
- Skills training programmes for parents and other caregivers, health promotion, care, rehabilitation services, etc.
Cultural differences and diagnosis:
- Biochemical pathways involved in core autism symptoms are unlikely to be different between cultures.
- Notable cultural differences in who gets a clinical diagnosis of autism:
- United States and the United Kingdom: The majority of children with an autism spectrum diagnosis are likely to be verbal, with average or higher than average IQ, and attending mainstream schools.
- India: majority of children in India often have intellectual disability, and limited verbal ability.
Reasons for differences:
- It is driven by a range of sociological factors, such as:
- access to appropriate clinical expertise
- the allowance of provisions for inclusion in mainstream schools
- availability of medical insurance coverage for autism interventions.
Challenges:
- Autism is assessed behaviourally, and behavioral assessment tools (i.e. questionnaires or interviews with professionals) are the starting point for all research and clinical work on autism.
- Most of the widely used autism assessment tools have limited availability in Indian languages.
- Some of the more widely used tools have been translated and validated locally.
- There has been a rise in the development of indigenous autism assessment tools.
- The plethora of these tools can create challenges in comparing across them.
- A clinical diagnosis serves as a gateway for interventions and services, with some parents having to wait for years, or traveling across the country, to get a confirmed diagnosis.
- Delays in interventions can be costly for neurodevelopmental conditions such as autism.
Importance of observational measures (e.g. where individuals are asked to perform a task):
- It can contribute meaningfully to assessing autism-related features.
- Observational measures rely less on verbal information, and more on task performance, and are thus more easily translatable across cultures and settings.
- A combination of questionnaire/ interview measures alongside observational measures is ideal for assessing autism.
Demand and supply in India
- India has less than 10,000 psychiatrists, a majority of whom are concentrated in big cities.
- Current gap between demand and supply cannot be met directly by the specialists alone.
- This gap is not relevant for behavioral assessments alone but also for providing psychological interventions.
What steps need to be taken?
- Parallel efforts to widen the reach of diagnostic and intervention services by involving non-specialists, similar to a stepped-care model for psychological therapies, is required in order to bridge this chasm.
- Approach for both autism identification and intervention in an Indian context.
- Availability of a suitable non-specialist workforce (e.g. Accredited Social Health Activist (ASHA)/Anganwadi workers, parents/caregivers)
- Appropriate digital technology (e.g. apps, smartphones) that can capture both self/caregiver report as well as observational data.
- It is vital to develop a pipeline of routine assessments for key domains of neurodevelopment (example, social, motor, sensory, cognitive) that can then lead to parent/non-specialist assisted behavioral interventions, irrespective of the final formal diagnosis.
- If a child presents with social behavioral difficulties s/he could be referred to a parent/non-specialist assisted programme on evidence-based actionable strategies in social skills development.
Way Forward
- Assessment must not remain limited to measures of behavior alone; autism is increasingly viewed as a systemic condition.
- Greater focus on areas that have historically been under-researched in autism, such as sleep, diet, sensory symptoms, and immune function need to be included within routine assessments.
- While considering the components of assessments we also need to consider the assessors.
- Most available autism assessment tools need to be administered by a specialist mental health professional.
- There is a growing evidence base for simple behavioral interventions that parents/caregivers can be trained.
- It can have a positive impact.
- The risks for administering these interventions to a child who may not necessarily need them are significantly lower than those of not administering them
- Sustainable public health pathways need to be developed such that they do not depend critically on a confirmed diagnosis from a specialist.
- Develop a national programme on autism, to link researchers, clinicians, service providers to the end-users in the autism community in India.
- It needs three essential components that are joined up:
- assessment
- intervention
- Research needs to focus on developing and refining appropriate assessments, as well as designing efficient implementation pathways.
- The clinical and support service workforce needs to be expanded by training non-specialists such that a stepped-care model can be rolled out effectively across the nation.
- Large-scale initiatives to build public awareness can serve to reduce stigma associated with autism and related conditions.
- A national programme needs to be informed by consultation with different stakeholders, with a primary focus on the end-users within the Indian autism community.
- Partnership with the private sector would be vital, given the important work done by some of the parent collectives, and NGOs in this space.
- It needs three essential components that are joined up:
QUESTION FOR PRACTICE
The Rights of Persons with Disabilities Act, 2016 remains only a legal document without intense sensitisation of government functionaries and citizens regarding disability. Comment.(UPSC 2022) (200 WORDS, 10 MARKS)
