KOCHI: Preetha G P, the mother of 20-year-old Siddharth, realised her son had severe autism when he was just three. When she saw her son exhibiting delayed communication and restlessness in pre-school, she took him for a check-up.
“This was years ago. Back then, such conditions were unheard of. My son did say some words in the beginning, but his prolonged difficulty in verbal and emotional expression was concerning. He was diagnosed with Level-3 ASD, formerly known as low-functioning autism,” says Preetha, a small-scale entrepreneur hailing from Thiruvananthapuram.
Therapy and proper guidance help people on the autism spectrum get basic chores done. It includes self grooming, behaving according to various situations, etc. However, access to therapy is still not a feasible option for many, she says.
“For this, inclusivity is a must. People on the autism spectrum need to have social interaction with those not on the spectrum. This is what I’ve always struggled to achieve,” Preetha explains.
According to her, in Kerala, there is a dearth of accessible facilities like therapy centres and schools that help in the development of people with autism. “However, either it’ll be too expensive, or won’t have enough resources available as per requirement. I don’t expect to get my son educated, because his learning skills are poor. However, I want him to develop the capability to function in my absence,” she says.
Dr Arun B Nair, consultant psychiatrist at Government Medical College, Thiruvananthapuram, rejects terms like high functioning and low functioning as such labels can cause miscommunication and increase stigma. “Also, neither one describes the level of ability across multiple categories,” he says.
He broadly explains autism thus: “Autism is a communication disorder and is a broad term. Only around 1/3rd of the population on the spectrum has normal intelligence. This is what people interpret as high functioning. Of them, only 10 per cent would be exceptional in one skill, that is called savant syndrome,” he says.
“If we can identify a person’s forte and provide ample training, they will be able to function without much intervention.”
He cites one example. “Years ago, parents brought a Class X boy for consultation, saying they weren’t able to find a rehabilitation centre for him. They were from a rural area and were finding it difficult to look after him. The boy never looked at my face. But he was scribbling something on a piece of paper. After consultation, I saw that he drew quite a decent portrait of me. I told his parents to channel resources to help him excel in this skill,” he says.
However, the doctor explains that not many children with autism will stick to a routine. So trainers have to schedule according to the student’s convenience.
“After proper treatment and guidance, the boy has grown up to be a designer. He is working in an advertising firm in Bengaluru,” says Arun.
Affordability & accessibility
Dr Jayasree, whose son is now 22 years old, was adamant about not taking her son to a special school. She wanted him to interact with peers who weren’t from the same background. She believes such social interactions are beneficial, especially with students outside of Autism spectrum disorder (ASD), as they can improve their analytical capability.
“I took him to several schools. However, they all said the school management won’t be liable if my son faces mistreatment by the so-called normal students. After much searching, a top school in Ernakulam agreed to enrol him on the condition of hiring a shadow teacher at an additional cost on top of the already high fees. There were quite a few staff and students who supported him,” Jayasree says. The social environment has been beneficial for him.
However, Jayasree says, affordability is one major concern when it comes to the development of children on the spectrum, and one of the major factors that caters to their well-being is therapy. Occupational therapy, speech, behavioural modification, and sensory integration... all help one to function smoothly.
“Private-run institutes are proven to be effective, but it is not feasible for most parents. For 45 minutes of training, the cost ranges from `100 to `1,000, sometimes higher,” she explains.
“Autism affects people from all walks of life. But what about those who are financially struggling?” she asks.
“I’ve seen instances of mothers tying up their children at homes when they go to work. No parent wants to do this. Aren’t they also part of society? The service has to penetrate the grassroots level.”
Need for inclusive education
Dr Arun confirms that the state isn’t fully equipped with the necessary facilities.
“According to recent studies, in every 50 births, one child might be on the spectrum. In that sense, we require facilities even at taluk level, including psychiatric departments. This will help them get treatment near their houses and avoid travelling long distances,” he says.
Preetha has now found her son in a residential facility in Thrissur for training and therapy. Since Sidharth doesn’t have access to education, she makes sure to include social activities in his routine.
“A few years ago, during a summer vacation, I took Sidharth to a swimming camp. Swimming can improve motor skills, speech, cognitive ability and confidence. However, he was denied access to the facility, as they don’t have staff to train children with autism.”
She also adds that when Sidharth was sent to school he also faced physical torture. The staff mistreat children when it becomes difficult to discipline them, she alleges. “However, many on the spectrum cannot express what they feel and experience. It was a few students with Down syndrome who spoke to me and showed marks on their body,” Preetha explains.
Training and therapy
According to Dr P Bhanumathi, founder of AMHA Autism Centre in Thrissur, which has been functioning as a non-profit organisation for the last 28 years, daily therapy is required for children with ASD.
“Aside from education, the next priority is to make them capable of doing things on their own. For that, we also have ADL (Activities in Daily Life), like grooming, making the bed, preparing food, and how to behave with visitors. Autism is a spectrum that requires more intervention,” she says.
Bhanumathi says as per his knowledge, there aren’t any solid government programmes or facilities accessible to a large number of people. “As a result, private institutes are mushrooming, presenting themselves as game-changers. But many end up not being helpful to the children,” she adds.
She cites cost as one reason. “One need to spend `1,000 per hour, which may add up close to `Rs 40,000 a month. Not many can afford it. And if parents discontinues classes, after a few months of seeing improvement, then the child’s development may regress.”
Another major issue, she says, is access to dedicated rehabilitation facilities. Her centre in Thrissur accommodates people above 18 years old. “Currently, we are at capacity with 60 members. And the oldest is 72 years old,” she says.
People on the spectrum, as they grow up, suffer from the absence of their guardians, as aged parents and financially struggling families find it difficult to look after them. “Where will these people go? There should be similar organisations accommodating those above 18 years,” Bhanumathi adds.
And she points out the main hindrance — the lack of aid from the government.
Employment
When it comes to employment opportunities, so far no person on the autistic spectrum has secured a government job in the state, though a reservation is available. As per the Rights of Persons with Disabilities Act, 2016, which is in line with the principles of the UN Convention on Rights of Persons with Disabilities, there is 4% reservation for all persons with disabilities. “Under the Act, there’s a 1 per cent reservation exclusive for people with mental illness, intellectual disabilities and on the autism spectrum. However, it hasn’t yet been executed. Once a list of eligible persons are prepared, some would get government jobs,” says Jalaja S, additional director of the social justice department.
For special care
According to Shooja S Y, state programme officer, Samagra Shiksha Kerala (SSK), autism centres have started functioning at 168 block resource centres. The centres are equipped with therapists and special educators, he says. “Students in government and aided schools who require additional support are referred to the centres.” There are 2,886 special educators available in schools along with 1,468 special care centres. “However, this is still not enough. The role of special educators is to empower general teachers and help them guide the students effectively. Unfortunately, most of the autism centres lack speech therapy, sensory integration therapy and such facilities. Fund for the same has to be approved,” he says.