Context: World Autism Awareness Day was celebrated on 2nd April Which highlights the fact that more than one crore Indians are affected with autism which requires the intervention of the government.
What is autism?
Autism is a developmental disorder with symptoms that appear within the first three years of life. Its formal diagnostic name is autism spectrum disorder (ASD). The word “spectrum” indicates that autism appears in different forms with varying levels of severity. That means that each individual with autism experiences their own unique strengths, symptoms, and challenges.
How autism spectrum disorders are described?
Psychiatrists and other clinicians rely on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to define autism and its symptoms. The DSM-5 definition recognizes two main symptom areas:
- Deficits in social communication and interaction Restricted,
- Repetitive behaviours, interests, or activities.
These symptoms appear early in a child’s development—although diagnosis may occur later. Autism is diagnosed when symptoms cause developmental challenges that are not better explained by other conditions.
Autism symptoms and behaviours
Individuals with autism may present a range of symptoms, such as:
- Reduced eye contact
- Differences in body language
- Lack of facial expressions
- Not engaging in imaginative play
- Repeating gestures or sounds
- Closely focused interests
- Indifference to temperature extremes
These are just a few examples of the symptoms an individual with autism may experience. Any individual could have some, all, or none of these symptoms.
Keep in mind that having these symptoms does not necessarily mean a person has autism. Only a qualified medical professional can diagnose autism spectrum disorder.
Each person with autism has their own strengths, likes, dislikes, interests, challenges, and skills, just like you do.
How autism is diagnosed?
There is no known biological marker for autism. That means that no blood or genetic test can diagnose the disorder. Instead, clinicians rely on observation, medical histories, and questionnaires to determine whether an individual has autism. Physicians and specialists may use one or several of the following screening tools:
- Modified Checklist for Autism in Toddlers, Revised (M-CHAT), a 20-question test designed for toddlers between 16 and 30 months old.
- The Ages and Stages Questionnaire (ASQ), a general developmental screening tool with sections targeting specific ages used to identify any developmental challenges a child may have.
- Screening Tool for Autism in Toddlers and Young Children (STAT), an interactive screening tool, comprising 12 activities that assess play, communication, and imitation.
- Parents’ Evaluation of Developmental Status (PEDS) is a general developmental parent interview form that identifies areas of concern by asking parents questions.
In rare cases, individuals with autism reach adulthood before receiving a diagnosis. However, most individuals receive an autism diagnosis before the age of 8.
Autism is a lifelong condition, and a wide variety of treatments can help support people with ASD. The symptoms and comorbidities—conditions occurring in the same individual—are treatable.
- Early intervention delivers the best results. Parents and caregivers should seek out the advice of a qualified medical professional before starting any autism treatment.
- Advances in understanding autism, its symptoms, and comorbidities have improved outcomes for individuals with autism.
When a person has more than two or more disorders, these conditions are known as comorbidities. Several comorbidities are common in people with autism. These include:
- Gastrointestinal and immune function disorders
- Metabolic disorders
- Sleep disorders
Identifying co-occurring conditions can sometimes be a challenge because their symptoms may be mimicked or masked by autism symptoms. However, diagnosing and identifying these conditions can help avoid complications and improve the quality of life for individuals with autism.
Why India needs a national programme on autism?
- Cultural differences and diagnosis: The majority of children with an autism spectrum diagnosis within the United States and the United Kingdom are likely to be verbal, with average or higher than average IQ, and attend mainstream schools. In contrast, a significant majority of children in India who get a clinical diagnosis of autism often also have an intellectual disability and limited verbal ability.
Autism is assessed behaviourally, and behavioural assessment tools (i.e., questionnaires or interviews with professionals) are the starting point for all research and clinical work on autism. Yet, most of the widely used autism assessment tools have limited availability in Indian languages.
- Poor supply of specialists in India: According to the latest estimates, India has less than 10,000 psychiatrists, a majority of whom are concentrated in big cities.
While the number of mental health professionals continues to grow, the current gap between demand and supply cannot be met directly by the specialists alone.
This gap is not relevant for behavioural assessments alone but also for providing psychological interventions. Parallel efforts to widen the reach of diagnostic and intervention services by involving non-specialists (e.g., Accredited Social Health Activist (ASHA)/Anganwadi workers, parents/caregivers) and the appropriate digital technology (e.g., apps, smartphones) that can capture both self/caregiver report as well as observational data.
What should be the components of the all-India programme on autism?
A national programme on autism should aim at:
- linking researchers, clinicians, and service providers to the end-users in the autism community in India.
- Intervention, and
- Promoting R&D in the Autism
- Expansion of clinical and support service workforce by training non-specialists such that a stepped-care model can be rolled out effectively across the nation.
- Consultation with different stakeholders