The tagline of this year’s World Autism Awareness Day (April 2) is ‘Leave no one behind’. It aims at raising awareness about people in the spectrum; the focus is on inclusive education along with inclusion in workplaces.
Autism is a neuro-developmental condition that hinders the ability to communicate and socialise along with other atypical activities. According to research by Alla Katsnelson in 2018, one in 100 children in India under the age of 10 has autism and one in eight has at least one neuro-developmental condition.
Director of Sparsh for Children Surabhi Verma told Patriot, “Over the years, awareness on the level of diagnosis and methods to help the children with autism have increased. But laypersons don’t know how to be with an autistic person, what to do or what not to do when a kid is crying or acting differently. There is a need to include the parents and teach kids to be more comfortable around kids in the spectrum. This kind of understanding is still missing in our society.” Verma has been working among children with special needs for the past two decades.
Early signs
Though the signs may differ from child to child, there are three basic signs to look out for. First is the social skills – no matter what the diagnosis, they’ll have social skills different from the neurotypicals. They might not talk to you, greet you or maintain eye contact. There are cases when children are capable of maintaining eye contact but will not know how to initiate a conversation.
Second is the need to communicate. Children with autism usually talk about themselves, they don’t know how to understand or listen to other people’s interests.
Third is play skills. Children in the spectrum have their own games. They don’t like anyone else playing with them and even if they do, they don’t know how to reciprocate.
“I found out when I was in college,” says Zamir.* “I have had trouble during my childhood, I was really afraid of loud noises, I would almost have seizures and sensitivity towards lights. It took me three years to tie my shoelace at once. So I was looking up what could be the reason for all this and slowly realised that I have this condition even though I was not professionally diagnosed.”
Now that he is living in a big city alone, he gets affected by excessively loud horns or the need to rush somewhere. “When I am in extreme stress, I’ll become completely non-verbal. There are a few hand signals which I use or type out my message on some software so people around me understand”, he elaborates.
Although research says autism affects boys and girls equally, correct diagnoses have been heavily tilted towards boys. Generally, parents get the feeling that something is different when the child has breakdowns or is not able to make friends, not even interacting with family members.
In case of females, when they are quiet, parents tend to ignore it, presuming that she may be an introvert. This situation has to change and parents have to be open about diagnosis. For example, if a girl child has withdrawn into a shell, non-communicative, doesn’t like to go out and follows only one person in the house, a doctor should be consulted.
“Until the age of five, you cannot give a diagnosis, because only at the age of five you can see the changes clearly. Till the age of five, we say that the child is at risk and we shouldn’t be hasty in getting a diagnosis”, said Verma
Curriculum changes
If the child is going to school, she is (and should be) exposed to all subjects. At Class 6, when the curriculum changes, CBSE has offered many exemptions for students in the spectrum, though not everyone needs it. As a consultant or a trainer, one has to help the children find what they enjoy and what they are good at. Then an individualised decision needs to be taken for each child regarding subjects and curricular activities.
The most important factor that must be understood is that these kids have social and communication delays, adds Verma.
While talking about the effects of the pandemic on the kids, Verma said that during Covid-19 lockdowns, the children were homebound for two years and there were no social expectations from them. There are kids who have settled down with low anxieties, who have been able to manage well with the online curriculum.
Now as the schools reopen, there is a whole change in the dynamics. The children are not willing to go out as they are happy with their few friends and parents. A lot of struggle, rising anxieties, negative behaviour, losing focus on studies can be witnessed. With proper therapy and care provided they will bounce back.
It is mandatory in central and Delhi government run schools to appoint a special educator. Schools are also allowing para teachers to accompany the students. Governments and universities are providing reservations, but there is always a scope for improvement.
Therapy and schemes
The Indian government provides schemes and programs relevant to people with autism and their families. Nirmanya is a health insurance scheme which gives coverage upto Rs 1 lakh with a single premium across age bands. To avail the scheme, it is mandatory to have a disability certificate.
The therapies are affordable but it varies depending upon from which centre and area the parents are going to and the severity of the diagnosis. Some children require more therapies than others. There are government-sponsored therapy centres and special schools which take care of all needs of the child as well.
Adulthood
People on the spectrum are diverse, some do well in the job sector. They still struggle with social skills, office pressures and underlying office construct. They manage with the help of psychological backup. Most of them choose vocational studies, graphic designing or any job line where a formal setup is not required. From Class 9, the students are provided career counselling, to understand what areas they are good at.
“I have seen people express the need to have a partner, a close friend or the need for marriage”, says Verma. “Till now we are struggling in that area because of the taboo. In India people with mild signs do get married but people who have more difficulties find it hard to reciprocate feelings towards the opposite gender,” adds Verma.
When asked about how to reduce the stigma, Verma says that society has to accept the fact that parents are doing their best and it takes time. Everyone needs to be patient around the child and give them space to grow.
‘We are a work in progress’
Gopika Kapoor, autism consultant and author of the book Beyond the Blue: Love, Life and Autism, speaks about being mother to a neuro-divergent kid.
Fourteen years ago, when her son Vir was diagnosed with autism, Gopika Kapoor and her husband were shattered.
“The first thing that came to mind was: What are we going to do? I kept saying that repeatedly, I went through all the five stages of grief. For a really long period, it was exhausting as Vir had a neuro-typical twin sister Gayatri. Balancing time between them, making my extended family understand, taking Vir to his sessions burnt me out. The amount of anxiety and stress reached a point where it all made sense to me. It is not a perfect life but my acceptance made it perfect for me.”
Vir started showing signs when he was five months old, when there was a clear contrast to his twin. He would not respond to his name, even on his first birthday he was sitting in his tent by himself. His language was not developed, he used reverse pronouns; for example, he used ‘you’ instead of ‘I’, he used to throw tantrums while putting on a t-shirt.
“He was in his own world and it was very difficult for us to reach him. It was then the movie Taare Zameen Par released and more articles on dyslexia appeared. “We started to make sense of the behavioural patterns. I was hoping for a dyslexia diagnosis – it turned out that her son is autistic.
After her son’s diagnosis, she joined Umeed Child Development Centre as a junior therapist. For a long time, even the parents of her patients didn’t know that her own son was on the spectrum. “Now my son is 17 years old and there is very little for me to do. I trained him with the help of visual aids. There is a schedule in his bathroom right from how to have a bath, comb his hair, wash his face and apply deodorant. I have to make him learn a script for things which come naturally to neurotypical kids. I had to teach him everything, what to do, what not to do, how to behave around girls.”
Life with Vir, she says, is a constant teaching-learning process. He is independent now, he does his homework alone. “But autism doesn’t go away, so there will be situations where he gets irritated. Something might have happened during the day that triggers him, so I have to talk to him and get it out slowly. I always say he is a work in progress, so am I. I am still learning many things from him.”
The bond Gayatri and Vir share is a blessing, she says, “She is his biggest ally, his cheerleader and his best friend.”
As told to Judith Mariya Antony
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