Written specially for Vikalp Sangam
Photos by Jo Chopra
Aparna Das wanted to know where all the adults with Autism had gone. There are so many children with Autism (1 in 68 children born in the US today will have the disorder), she points out, and the numbers just keep rising.
“But where are all the adults? Where do they go?”
For Aparna, it wasn’t an academic question. It was personal and it was urgent. Because Aparna’s younger sister Runi has Autism and at the time, Aparna was 40, Runi was 30 and there was still no plan in place for her long-term care.
Here in India, that’s not unusual. In most families, parents care for their adult child with a disability until the day they die and the closer the end seems, the more acute the anxiety: “What will happen after me?”
What was unusual in this case was that Aparna, the sibling, was the one worrying about Runi. And at 40, she was young for the task.
Autism is a neuro-developmental disorder which varies widely from one person to another – for this reason it is called a “spectrum disorder”. There is usually a triad of symptoms: impaired social development, poor communication and restricted or repetitive interests. A child with autism may avoid making eye contact, have limited or no speech, find other people’s emotions confusing and upsetting and play with the same object over and over in precisely the same way (lining toys up in a particular order, for example; or watching the same cartoon hundreds of times in a day).
People with autism need structure and routine to function and they often find interruptions and transitions extremely difficult. Their poor social development makes relationships challenging – they are often mystified by body language and other social cues which typical people understand without even thinking about. Temple Grandin, a well-known, highly accomplished woman with autism, remarking on how neuro-typical people interact, said she could not understand them at all. “I feel like an anthropologist on Mars,” she said.
Sensory issues are extremely common in people with autism, affecting as many as 90% of the population. This means that certain textures can be intolerable to them (like a scratchy sweater or the inseam of a sock; or certain foods); sounds typical people hardly notice may feel piercingly loud to them; being touched in particular ways may feel like being pricked with needles. One of the reasons why a group home situation works so well for people with autism is that routine and structure can be provided consistently. For most families this is nearly impossible. Other children in the family, as well as parents and grandparents, thrive on change and variety and meeting everyone’s needs can become an insurmountable challenge. In a group home, which is designed for people who all have similar issues and has many more people on hand to deal with them, familiar, predictable routines provide comfort and a safe space for residents to thrive and grow. The opportunities which are available in an institutional setting are simply not possible for most families to provide at home.
Aparna Das is a special educator based in Dehradun, the capital city of Uttarakhand. And in 2011, when she started really grappling with the question of Runi’s future, the answer was clear: if anything was going to happen for her sister, she was going to have to do it herself.
“I was so petrified of the kind of life we were going to leave for Runi,” she explains. “And I understood what other families were going through.”
And so in 2011, Aparna decided to set up a group home in Dehradun for adults with Autism. She had no money to speak of, no building and precious few applicants for admission. To say nothing of the fact that the only one with any training was herself.
No worries. She had a vision and she had faith that everything would fall into place.
Oddly enough, it has.
Today, Arunima, the centre she named after her own sister, is flourishing. Fourteen adults and teenagers live here full-time (there is one day scholar), along with a staff of fourteen. That looks like a one-to-one ratio, but think again. This is 24 hours a day, seven days a week. Only parents work that kind of shift. Group homes are staffed by professionals and professionals need to go back to their own homes every day. They need to recharge and regroup. This kind of work is intense. The only way it can be sustained is by having humane shift-based work hours and recognising the needs of the staff.
The team consists entirely of local people, most of whom have been trained on the job. Like many organizations, Arunima often finds it easier to train people with no formal qualifications than to undo what passes for knowledge in individuals with degrees and certificates from slightly shady institutes. But even with careful, methodical orientation and skills-building, Aparna still maintains constant vigilance over the day-to-day functioning of the centre. “I find myself constantly worrying about people’s attitudes. Unless I keep talking, teaching, and explaining, staff do tend go back to their typical attitudes.”
That may mean doing too much for a resident who is quite capable of independence or not providing enough opportunities for even further growth in a person who is ready to move to the next level; it may also mean reacting with anger or disgust to behaviours that a resident has not yet learned to control.
It’s understandable. In a culture where individuality is not encouraged, where both at home and in school, children are taught to act like everyone else, think like everyone else and be like everyone else, the Arunima philosophy of celebrating differences and accepting diversity is strange. It has to be constantly reinforced, modelled and planned for. It doesn’t come naturally. But the staff are open to the approach which is practiced at Arunima and eager to learn more. They are also often surprising in their depth of compassion and the imaginative, innovative responses they come up with for dealing with difficult behaviours.
The structure in place at Arunima makes all the difference. The very high staff-to-resident ratio ensures the quality of the programme: there is an intensive and immediate approach to any behaviour issue. This alone provides incredible reassurance to staff and residents alike. Staff know that there is a structure and a plan in place to contain difficult behaviours. They won’t be asked to do more than they feel capable of. And residents know that things won’t get out of hand. Their feelings will not be allowed to overwhelm them. They know they are safe here.
“I’m in awe of my staff,” Aparna says. “They are incredibly devoted. They come back from their days off all concerned about what might have happened while they were away. They even dream about our residents.”
You cannot buy that kind of dedication. But you do have to pay for it. Arunima staff earn reasonably well by the standards of the disability field (a starting salary for a special educator is 8K). There are frequent excursions into the community, computer aided technology is a major part of the program and the furnishings of the centre are cheerful and comfortable. The food served is of excellent quality and overall, the standard of living, while not extravagant, is high.
Another major expense is the rent for the two houses the centre occupies. The fact that there even are two houses is evidence of the quality of the program. Most organisations would make do with one for such a small group of residents. But Aparna is adamant that her students need a clear transition from home to work/school. It’s important that they live in a home just as anyone else would and that they commute to the place where they spend their working/learning time. Somehow she finds the money.
How does she do it? Arunima does charge fees; residents pay up to 26,000 per month and their families are happy to do so. Some wealthy families even sponsor or subsidise the fees of other residents who can’t afford the service. But there is always a shortfall in the total annual budget of 52 lakhs and and donations – entirely from individuals – are what keep the project running.
Aparna does most of the fundraising herself, relying on the good will of her supporters, an occasional corporate grant and frequent resort to miracles. But while it is sometimes stressful, financing her operations is not the main challenge she faces. Nor is it the day-to-day challenge of helping children and young adults with autism cope with life. “That part is easy! We’ve seen amazing changes occur in our residents simply because we provide them with opportunities. We have high expectations for them and they rise to them. That’s not the problem.”
“The problem is dealing with the public and with bad attitudes in the community. That’s what’s wearing and frustrating,” she explains. In its five years of existence the centre has shifted five times – sometimes due to practical concerns and sometimes due to unhappy neighbors.
Each move has necessitated an intensive awareness effort in the community – a door-to-door campaign designed to address people’s fears, misapprehensions and biases. It’s hard, slow work and because of the nature of Autism (residents adjusting to changes often have meltdowns which can be upsetting and frightening to people who don’t understand why they are happening, for example), it often feels like one step forward, three steps back. In one locality, neighbours complained to the police that residents were being abused by staff because of the screams they would hear.
Yet, Aparna is also aware that Arunima is part of a slow but steady sea change in India’s attitude toward disability. She acknowledges that the awareness work she is forced to undertake each time they move is a necessary and vital part of that change and that her role is not only to provide excellent services to young adults with autism but to educate the community about why her work is so important.
“When we first moved in to the neighborhood, there was a lot of resistance.” she told me when I visited the centre for this interview. “People were nervous. They didn’t understand autism or why our kids act differently than theirs. We did our usual thing of going door-to-door. We explained what autism is and what we do and now our neighbours are amazing. They’ve come to visit, they’ve bought our products and they even invited us for their neighbourhood Holi party where they treated us like royalty. They’ve been wonderful.”
Part of their response may be intellectual: once it’s been explained, the neighbours surely understand more about autism as a condition like any other (diabetes, for example, or hypertension – to be managed, but not cured). But part of their response must also be a reaction to the miracle that is Arunima.
Because you don’t have to be a psychologist to understand that the transformations which occur every day here are both astonishing and unprecedented. You don’t have to be a special educator to appreciate that the incremental changes taking place here all add up to monumental shifts in the lives of young people and their families.
Maybe, just maybe, you need to be a parent (or a sibling) to truly appreciate the new world that Arunima represents: a world of peace and freedom; a world of acceptance, a world of Joy Possible.
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