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EDITORIAL ANALYSIS : India needs a national programme on autism

 

Source: The Hindu

  • 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.

 

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)