Arpita, from Rourkela Odisha, noticed something amiss about her son when he was about 18 months old. Doctors in her city could not provide her the right guidance. The more she read about her son’s symptoms, the more convinced she was about the need for a formal assessment. She travelled to The National Institute of Mental Health and Neuro-Sciences (NIMHANS), Bengaluru, for an assessment, following which she even relocated from her bank job to the city.
After three years of taking early intervention services and parental training from a private organisation in the city, Arpita feels more equipped to manage her son and will now be moving back to Rourkela.
A survey conducted in 2019 indicates a stark difference in autism awareness levels between the US and India: 100% of survey participants in the US had heard of ASD compared to only 12.6% of participants in India. Raising awareness can help individuals and their families overcome stigma, discrimination and attain best possible outcomes for all.
There are about 18 million autistic individuals in India. However, the overall awareness levels about autism remains low and shrouded by myths of being a sickness or result of poor parenting. Bengaluru, however, has one of the largest availability of autism intervention and support services.
Many parents whose children have been diagnosed with autism in other parts of the country move to here to get timely intervention services for their children. This is why, among various Indian cities, Bengaluru is preferred by many parents for its support services.
Autism is usually diagnosed between age 2 and 5. Early therapeutic intervention in the form of occupational therapy, speech therapy, behavioural therapy, educational support, among others, can make all the difference to an individual with autism towards leading an independent and respectful life.
Educational support and intervention services
Shilpa NP is Assistant Director of Stepping Stones, an Applied Behaviour Analysis (ABA) based school for children ages 1.5 to 10 years who are diagnosed with Autism Spectrum Disorders,social communication disorder, and related disabilities. Each year many families move from outside of Bengaluru and even outside of India to enroll their children in Stepping Stone’s intervention programme.
Shilpa is a Speech and Language Pathologist by training and has worked in more than five states, including Maharashtra, Jharkhand, Delhi, Chhattisgarh and Kerala. She feels that Bengaluru has a diverse group of therapists who are ready to work in collaboration with each other for the benefit of the child, an approach she feels is missing in other cities.
NIMHANS, St John’s, Dr. S R Chandrasekhar Institute of Speech and Hearing are considered among the best places to get an autism assessment by parents in the city and even from outside.
Vocational training and higher education
While the city has ample educational support and intervention services to help individuals on the autism spectrum in their growing years, vocational training and higher education options are still sparse and limited. To fill this lacunae, Antara Dey Chowdhury, a retired squadron leader of the Indian Air force and a Board Certified Behaviour Analyst (BCBA), along with a friend, started Redili (Respect and Dignity in Life) in April 2022.
At Redili, they train individuals on the autism spectrum on various computer based and hands-on skills. As a conscious choice team, Redili has decided to start training individuals as young as 14 to ensure increased chances of of mastering a skill leading to an independent and respectful life. The team is working closely with corporates to bring paid work to their students within the institution’s premises. The response has been encouraging.
Support for caregivers
When a child gets diagnosed with autism, the lives of parents can get overwhelming as it takes a while to accept the same. Following which deliberations are needed on the right intervention services for their child. In such times, support and advice from parents on the same journey can help tremendously.
Mitra for Life, a non-profit based in Bengaluru, among other autism support services, provides access to an empowering network of such families to get motivation, resources and to create change. They have built a network for several hundred families in the last few years.
Parents of neuro-diverse children in the city connect through whatsapp and other groups on social media. It helps them reach out, seek advice and support from each other. Sneha, who is the mother of a six-year-old girl on the spectrum, says “Being part of parent support groups on whatsapp makes me feel supported, I can reach out to parents who are in a similar situation, it is very comforting.”
As per Priya Kannan, an Art Based Therapy (ABT) practioner and a mother of two young adults on the autism spectrum, at present there are plenty of therapy options in the city as compared to when she began this journey nearly two decades ago. Priya is also the trustee of Wiztara for Autism that undertakes various initiatives to raise awareness as well as support families and individuals on the autism spectrum.
She has raised both her children to be independent and high functioning. She believes it is very important for parents to stimulate the child at home environment so that concepts get generalised for children with autism.
Several NRI parents find the India’s availability of a support system (extended family) more apt for raising children on the autism spectrum. Aarti (name changed) moved back to Bengaluru 12 years ago when her autistic and musically gifted son was 18 to help him pursue music further. Today, they successfully run a music school in south-east Bengaluru.
While Bengaluru has progressed a lot to meet the increasing demand for autism services, it still lags behind in general awareness and sensitisation of local citizens and even law enforcers. In a recent incident on the city’s Metro, an autistic teen was mishandled and asked to get off the train when he was having a meltdown due to sensory difficulties, a common symptom among autistic individuals. The main reason for this is the lack of awareness among the local police about the condition.
Antara says: “While awareness among the general population might take some time, phased sensitisation and awareness among law enforcers is the need of the hour.”
Overall in India, self-advocacy among people with autism is still at a very nascent stage. Apart from the inherent difficulties that people with autism face to become self-advocates, the general stigma that our society attaches to disabilities is an added deterrent to self-advocacy, which is often discouraged by families.
While the challenges of raising and supporting children on the autism spectrum can seem overwhelming, always assuming competence, working steadily to overcome challenges and providing an encouraging environment can make all the difference.
As Dr Temple Grandin, PhD, the world’s most famous autism self-advocate says about supporting children on the autism spectrum “There needs to be a lot more emphasis on what a child can do instead of what he cannot do.”
April: Autism awareness month
The United Nations General Assembly unanimously declared April 2nd as World Autism Awareness Day to highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as an integral part of society. Infact, the entire month of April has been observed as ‘Autism Awareness’ month since 2007.
Throughout April initiatives are undertaken by governments and organisations working for individuals with autism to educate local communities and raise public awareness about autism.
Autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Research indicates that individuals on the autism spectrum have structural difference in their brain that causes them to perceive and interact with their environment differently.