Mumbai: From Saturday night, several buildings and structures were lit blue, to raise awareness of autism spectrum disorders, for World Autism Day, which falls on Sunday. That awareness is very much needed, in a city and a country where there are still many miles to go when it comes to recognising and dealing with learning and development disorders.
What is Autism?
Autism is a neurodevelopmental disorder that affects communication and social interaction. Children with autism show difficulties in learning language, verbal and non-verbal communication, and social interaction. They may present some unusual behaviour like hand flapping, rocking and biting. They have trouble in processing what they hear, see, touch or taste.
According to the American Psychiatric Association, autism differs from person to person in severity and combinations of symptoms, and a more correct term would be Autism Spectrum Disorder: “There is a great range of abilities and characteristics of children with autism spectrum disorders — no two children appear or behave the same way. Symptoms can range from mild to severe and often change over time.”
Identifying autism
Early identification can help to start early intervention programmes. The treatment is mainly through remedial programmes and medications are used only in extreme cases,” says Dr. Subash Rao, consultant paediatrician.
Developmental paediatricians who help autistic children cope with the disorder agree that they have a lot of potential that needs to tapped. Awareness now needs to be focused on the right approach, says Mumbai-based developmental paediatrician, Samir Dalwai. “Everyone has been talking about spreading awareness,” Dr. Dalwai says, “but an important aspect is often missed out: that of reaching the right professional.”
A full-fledged team is required to offer a wholesome programme for a child with autism. But in most cases, Dr. Dalwai says, parents land up at a speech therapist or a vocational trainer and lose out on the golden period during which the right interventions can bring about a lot of change. Such a team, he says, would ideally consist of a developmental paediatrician who will chart out a detailed plan, along with a paediatric neurologist, paediatric psychiatrist, occupational therapist, a clinical psychologist, speech therapist and a special educator. “There is no gold standard diagnostic test that can say a person has autism or doesn’t; it is detected when parents suspect that something is amiss. But if the right kind of programme is offered to the child before three years of age, the progress is extremely good.”
Unfortunately, parents often land up consulting an otherwise capable medical professional who just does not have the training to provide a holistic approach. “They land up wasting lucrative time,” says Dr. Dalwai.
The thing to understand is that autism cannot be ‘treated,’ as it is not the presence of disease but rather, the absence of normal development. “Therefore the entire focus of the programme should be on the child’s development,” Dr. Dalwai says. “The team should also be able to document the progress for parents and take accountability for their advice.”
Autism and Mumbai
The city has a little over half-a-dozen developmental paediatricians, a number that is woefully inadequate. That figure is even more alarming when you consider the numbers. While there are no conclusive figures for India, in the USA, 1 in 70 children is said to have autism. A conservative estimate for India would be 1 in 68.
For World Autism Day, Forum for Autism (FFA: see Recognition by the law , alongside) has taken up the task of spreading awareness at railway stations. A short film on autism will be played on the screen at important railway stations and parents from the group will distribute informative leaflets about the disorder. An art exhibition is also being held at CST, where paintings made by children and young adults on the autism spectrum [see box] will be displayed.
Going blue for World Autism Day
• Chhatrapati Shivaji Terminus
• Bandra Worli Sea Link
• Shivaji Chowk, Vashi
WHO fact sheet on Autism Spectrum Disorder (ASD)
• ASD begins in childhood but tends to persist into adolescence and adulthood.
• While some people with ASD are able to live independent and productive lives, others have severe disabilities and require life-long care and support.
• Evidence-based psychosocial interventions, such as behavioural treatment, can reduce difficulties in communication and social behaviour, with a positive impact on wellbeing and quality of life.
• Interventions targeting people with ASD need to be accompanied by broader actions for making physical, social and attitudinal environments more accessible, inclusive and supportive.
• Worldwide, people with ASD are often subject to stigma, discrimination and human rights violations. Globally, access to services and support for people with ASD is inadequate.
With inputs from Meena R. Prashant and Shubha Sharma
