Advancing autism care in Goa

Implemented by Sangath in collaboration with the Directorate of Health Services and the Directorate of Women and Child Development, the NAMASTE programme has been working on training anganwadi workers to aid in early intervention in cases of autism

DR. ANUP NETRAVALKAR

Every year, on April 2, we observe World Autism Awareness Day—a time to learn about Autism Spectrum Disorder (ASD) and promote acceptance and support for neurodiversity. Autism, as ASD is commonly known, is a neurodevelopmental disorder characterised by impairments in social communication and interaction, along with restricted and repetitive patterns of behaviour. The term “spectrum” reflects the wide variation in strengths and difficulties which each individual with autism presents with.

Early signs of autism

Recognising autism early allows for timely support. Common signs include:

Difficulty with making eye contact, using gestures and facial expressions and an unusual tone of voice.

Repeating behaviours like hand-flapping, body rocking, or repeating words, often to calm themselves or communicate.

Intense focus on specific topics, which seem to consume their interest.

Having an unusual response to sounds, lights, textures, or smells.

The NAMASTE Programme

In Goa, the NAMASTE (Neurodevelopment and AutisM in South ASia Treatment and Evidence) program is implementing a community-based process to support early detection and intervention for children with neurodevelopmental disabilities, with a focus on autism. Implemented by Sangath in collaboration with the Directorate of Health Services and the Directorate of Women and Child Development, Government of Goa, the programme is well aligned with the ‘Disability Protocol for Anganwadi Workers’ recently released by the Central Ministry of Women and Child Development.

A cornerstone of the programme is the training of anganwadi workers (AWWs) in North Goa. To date, nearly 500 AWWs have been equipped with skills to screen children for autism, facilitating early identification and support. This initiative leverages the widespread presence of anganwadi centres to reach children at a critical developmental stage.

Beyond screening, select AWWs have been trained to deliver two interventions. The PASS Plus (Parent-mediated Autism Social Communication Intervention for Non-Specialists Plus) intervention is adapted from the U.K.’s Pre-school Autism Communication Therapy (PACT), and is designed to address the unique needs of children with autism in South Asia. This comprehensive intervention focuses on enhancing communication skills but also addresses behavioural concerns, sleep issues, and toileting challenges. The second intervention the WHO-Caregiver Skill Training (WHO-CST); will support families of children with other developmental disabilities to understand and support their child’s difference.

NAMASTE is hoping to demonstrate that we can support families to understand their child’s difficulty early by increasing awareness in the community for children who are developing differently, and support community workers to identify and deliver interventions in the communities where families and children live. All the work being conducted is done under supervision of specialists so families get the support they need. This approach, if found to be successful, will help detect children early and improve their outcomes.

NAMASTE is being conducted in four districts in South Asia: East Delhi, and North Goa in India; Godavari District in Nepal, and Colombo District in Sri Lanka. It is supported by the NIHR, U.K.

Common myths about autism

Myth: Autism is caused by bad parenting.

Fact: Autism is a neurodevelopmental condition influenced by a range of genetic and environmental factors, not parenting style.

Myth: Autistic individuals lack emotions or empathy.

Fact: Autistic individuals experience emotions deeply but may express them differently and may show empathy in unique ways.

Myth: Autism can be cured.

Fact: Autism is not a disease but a lifelong condition. With early and appropriate support, many autistic individuals can lead a productive life, though some may require lifelong support.

Myth: All autistic people have intellectual disabilities.

Fact: Autism affects individuals differently—some have intellectual disabilities, while others have average or above-average intelligence.

Myth: Autistic people cannot communicate.

Fact: Many communicate through speech, gestures, pictures, or assistive devices. It is our responsibility to understand how to communicate best with an autistic individual.

Myth: Autism is rare.

Fact: Autism is present in one in 100 children globally.

Myth: Autistic individuals cannot form relationships.

Fact: While social interactions may be difficult to form and maintain, many will build meaningful relationships with family, friends, and colleagues.

Myth: Autism only affects children.

Fact: Autism is life-long. Early intervention helps, but many autistic individuals will continue to require different kinds of support as they grow.

Myth: Vaccines cause autism.

Fact: Extensive research confirms no link between vaccines and autism.

(The writer is a senior program coordinator, NAMASTE Program, Sangath India)