A bridge to planet autism

Seema Yadav is too anxious to sit still. She paces around a bit, then perches beside her husband, Siyaram, on one of the yellow metal benches placed under a mango tree laden with fruit. The couple have waited 16 long days and nights to meet their 18-year-old son, Aman. It is the longest they have ever stayed away from him. They have flown down from Lucknow just to be able to see him from a distance, to reaffirm that he’s alright without them, to reaffirm that they did the right thing.

Learning to let go: Aman’s parents flew down from Lucknow to check on their son barely days after leaving him at an autistic care home in Hyderabad

On April 3, Aman had first set foot inside this lush, 9.5-acre facility called Autism Ashram, at Shamirpet, on the outskirts of Hyderabad. He had no inkling that his parents intended this to be his home for life.

Born autistic, Aman has added complications such as mental retardation and ADHD (attention deficit hyperactivity disorder). Seema, a housewife, and Siyaram, an excise duty officer in Lucknow, had explored all kinds of treatment therapies in Uttar Pradesh and Delhi. They found no cure.

Aman had started showing signs of aggression of late, jabbing visitors with his fist, refusing to climb the stairs to their home, constantly demanding car rides, and refusing to follow even basic routines. The situation was taking a toll especially on his 11-year-old sister, and the parents felt they needed to shelter her from the atmosphere of daily turbulence. Eighteen seemed like a good age to send Aman to a “home”. He seemed to need a right balance between the freedom to be himself and a disciplined environment.

It was a random internet search that led them to Hyderabad, to meet Anil Kundra, the founder of Autism Ashram. “The moment we arrived here, we knew it was going to be good for Aman,” recalls Siyaram.

It is the late-afternoon walk hour, pencilled into the routine of the residents. Assisted by two staff members on either side, Aman walks slowly, dragging his floaters, stopping to inspect a stone. From the windows of the guest house, his parents watch him excitedly, their eyes glowing with joy.

“He isn’t settled yet. While the other children are walking on their own, Aman still needs two staff members to hold him and walk... But he’s getting there,” his mother observes, after having watched him for less than a minute.

The autism map

Once upon a time on a small, green, quiet planet

Autisman: So – welcome to my home world

Earthling: Don’t you feel weighed down? It feels as if I’ve got weights strapped to my arms and legs.

Autisman: Ah, but on your planet, I always feel as if I’m swimming around in space, weightlessly.

Earthling: Okay. Now I understand you. I really understand.

— Naoki Higashida, ‘The Reason I Jump’

Autism Spectrum Disorder (ASD) refers to a range of conditions that affect for life a person’s social interaction, communication, interests and behaviour. Common symptoms include difficulty with eye contact, facial expressions and gestures; delayed language development; and repetitive activity among others.

However, the symptoms and severity vary greatly, making no two autistic individuals similar. There are high-functioning autistics, for instance, who are successful writers, coders, mathematicians, artists and scientists. Some famous people believed to have been autistic include Isaac Newton, Lewis Carroll, Charles Darwin and Steve Jobs. While it may be easy to romanticise ASD as a condition that spurs a genius-in-the-making, the reality is that most autistic individuals lead a misunderstood life, struggling with physiological and sensory issues on a daily basis.

At least one in every 89 children aged 2-9 has been diagnosed with autism in India, according to a study by Dr Shefali Gulati, chief of child neurology at AIIMS, Delhi. That is, as many as 2.2 million Indian children and 13 million adults live with the condition. Globally, there has been a spike in autism prevalence in the last two decades. In the US, for instance, it is currently one in every 68 children. What remains unclear, though, is whether improved diagnosis is bringing more cases to light, pushing up the prevalence rate.

“Earlier, all forms of mental, intellectual and developmental disabilities were clubbed under the same umbrella of mental retardation. Today, accurate and early diagnosis helps us recognise autism in a child even before they are 18 months old,” says Merry Baruah, founder of Action for Autism (AFA), one of the earliest NGOs working with ASD. At the special school that AFA runs at Jasola Vihar in the Capital, children aged two to 18 are trained to become independent with their food and hygiene needs.

The older adolescents are trained in vocational and spoken skills, which will expectedly fetch them a job in an inclusive employment market. But for autistics requiring a lifetime of caregiving, what are the alternatives in the making?

Call of the commune

Kundra first encountered autism in 1984, in Andhra Pradesh’s Bolarum district, where he taught English at a school. An autistic child was enrolled that year. “Back then nobody knew the word ‘autism’. They thought the child was ‘off’,” recalls Kundra. It was on a visit to London that he found out more about the disorder and the methods used to teach children with special needs. He then set up a special school in Bolarum.

In 2011, he encountered Sarma, a 70-year-old single parent of a 34-year-old autistic man. Sarma was about to adopt a 21-year-old man to take care of his son. Kundra, for the first time, understood the desperation and anxiety of elderly parents of autistic adults. The following year, he founded Autism Ashram as a residency where autistic children and adults could live in a safe and trusted environment for their lifetime.

Important conversations: Kundra chats with 23-year-old Tanvi, who is both autistic and bipolar, after she had a meltdown in her room

Aman is its most recent resident. There are 50 others between the ages of seven and 41. Their day begins at 6.30 am with a brisk walk, followed by a strict routine of occupational therapies, music, yoga, skating, games, swimming, exercise, gardening, park time and vocational training (which includes making paper plates, bags, candles and chopping vegetables). They are served gluten-free vegetarian food, known to minimise the digestive troubles that are common among autistics. Movies are screened during the weekend and there are outings in small groups to a nearby food joint or perhaps a visit to the dentist. Their busy routine ensures they are ready for bed by 9 pm on most days.

Staying in sync: In a music therapy room, autistic kids jam to Telugu and Hindi songs in perfect rhythm

“We want to give them a life of dignity and fun,” says Kundra, 62, walking briskly through a shady mango grove, past a neat row of rooms that serve as living spaces for the residents. Kundra’s father used to be an armyman, and that inspired him to replicate the military’s cleanliness, disciplined environment, green landscape and meticulous routine at this commune. This arrangement has found much favour with parents and the wider autism community. “This is what these kids need. They can’t be boxed within concrete 2BHKs,” says R Narayanan, the father of 15-year-old Pranav, who has been at Autism Ashram for two years now.

“With joint families no longer in vogue, parents in nuclear families simply cannot cope with the long-term challenges of caring for an autistic adult. Autism communes are the need of the hour,” says Parimal Pandit, a clinical psychologist with V-Excel Educational Trust, a Chennai-based lifespan organisation working with individuals with special needs. Many parents have told her that they are keen to explore options that will allow their autistic children to lead independent lives, and they wonder when and how it would be right for them to ‘let go’.

Collective life lessons

On the fringes of Delhi, further outside Gurgaon, lies Ananda Residency. Inside its 10 acre barren-looking campus are two spacious buildings still under construction. Ananda, as Barua calls it, is the AFA’s assisted living facility that she set up last October. The trigger for it was the long-term concerns of many parents, which struck a chord with her, as she too is the mother of a 34-year-old autistic son. Ananda currently has three boys aged 18 to 20. Later this month, a 55-year-old woman is scheduled to join. “The residents belong to loving families. Among those who have shown an interest so far, either one of the parents has died or there is sickness in the family that has made caring for the autistic individual difficult,” says Barua.

Long-term living apart, Ananda offers what it calls “respite stays” for the caregivers. If the family has work or personal commitments and cannot take its autistic family member along, it can opt for a short-term stay at Ananda. “The family needs a respite,” says Barua. And this feeling, perhaps, most honestly encapsulates what lies at the core of the need for such set-ups. “We are a society that judges, no doubt. But it is much more harmful for a parent-child relationship if a parent refuses to let go only to appear sacrificing in the eyes of society. A parent has the right to live a purposeful life outside the role of being a parent to autistic children,” she says.

Apart from the respite, parents look forward to the learning that their children will gain in the commune. The bathroom mirrors at Ananda are pasted with a series of images for brushing ‘prompts’ — visual cues for each stage of brushing one’s teeth. Behind the doors of the toilet are more visual prompts on how to use the toilet correctly. The TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) method the AFA draws heavily from, uses such prompts to help autistics do basic chores on their own.

“Say you go to the airport to catch a flight, don’t you look for signage to help you navigate through the process of boarding your flight? If the autistic can use visual prompts to function independently, that is a mark of progress,” says Shruti Bhatia, the supervisor in charge at Ananda.

This approach, however, has its naysayers too. “When people opt for residency programmes they are often misguided about the kinds of things their children will be able to learn or do independently,” says Amitha Jha, a 38-year-old Noida-based independent Board Certified Behaviour Analyst (BCBA). Hers is an internationally accredited degree that is awarded to those trained in using the Applied Behaviour Analysis (ABA) method for behaviour assessments and developing treatment plans for individuals with behaviour disorders, including autism. There are around 25 BCBA practitioners in India. Jha says children she has treated have returned from a stint at an autism residency programme with a decline in their learning curve. For real learning to happen, the prompts must be faded out gradually, she says, contrasting the ABA against the TEACCH methods employed in most autistic care homes in India. Put simply, the former relies on learning the hard way by painstakingly triggering memory recall, and fading away the prompts, while the latter ends up making visual prompts a learning crutch for life. “Many autism care set-ups cash in on the lack of awareness by making unrealistic promises that the child will never be able to meet,” adds the mother of a 13-year-old autistic son.

“We live in constant fear of ‘what after us’. This fear, along with lack of social acceptance and the horrid eventuality of institutionalisation in adulthood is the worst nightmare for us,” says Srijan Sandilya, another parent of an autistic child. Parents who chalk out their own independence from the challenges of raising their autistic children are seen as heartless.

Jha recalls reading a news report about a single working mother in Mumbai who chained her six-year-old autistic daughter to a furniture piece before locking the home and leaving for office. She made sure to leave food and water within her reach, to sustain her until she got back home in the evening. The neighbours complained to the police that she was ill-treating the child. “But what else could a single mother like that do? She did the best she could afford then. Somebody needs to earn a living to keep them both alive,” says Jha.

Kundra has seen worse. Two years ago, he read a news report about a small boy who had been abandoned in an auto-rickshaw in Mumbai. Twelve-year-old Manish’s father paid the auto driver a sum of money and asked him to drop off the boy at a particular destination, promising that someone would come to receive him. But no one came. When the Alibaug police station called for the boy’s parents to come forward, through the news report, it was Kundra who finally offered shelter at Autism Ashram. Today, Manish is a state-level marathon participant in the Khelo India sports movement for the differently-abled.

Life on wheels: Short-duration activities involving sports, music and crafts keeps the children on their toes round the day

Kundra uses cross-subsidy to care for those like Manish. Autism Ashram has residents drawn from across the world — Australia, Dubai, Abu Dhabi, Canada, Kuwait, Singapore, the US and UK. With 75 people employed to care for 50, Kundra incurs a cost of ₹42,000 per child. “Funds used to be a big problem, but not anymore. The parents of autistic children are willing to go the distance for all autistic children, not just their own,” he says.

Kundra’s programme has one inviolable rule — parents should commit to taking home their children twice a year: a month each in June and January. He has so far had two requests to forego this requirement. “They were willing to pay me in crores to not send the child back. I refused,” he says.

Many of the young residents at Autism Ashram come from broken families. Stories of self-harm, sexual abuse and mentally retarded parents are not uncommon. For such children, a commune can provide a much-needed stable environment.

Just outside the gates of Autism Ashram, Kundra has purchased another 12 acres. Walking past neat rows of flower beds, he outlines his latest plan — Autism Village, a commune that can accommodate 100 families. It will have a hospital, a shopping centre, a therapy centre, and a hundred pre-fabricated condos equipped with facilities. “A third of the families of the children in Autism Ashram have booked their place in the Village. With doctors, therapists and members of other professions in the village, it will be as self-sustainable as possible,” he says, adding that all the units have been sold out.

About 90 km from Bengaluru, in Denkenikottai, Smita Avasthi has just purchased 23 acres of fertile land to start Paripri — an autism residential assisted living facility. Avasthi, who runs therapy centres across Mumbai, Bengaluru, Delhi and Kolkata, is clear that the project is for adults above the age of 30. She plans to build a sustainable, income-generating setup that involves farming and small industry — residents will thus find ready and gainful employment, she says.

Pandit points out that several models have come up in recent years, ranging from assisted living and weekday residential facilities to more alternative community living where groups of parents of autistic children decide to purchase farmland and reside together, taking care of one another’s children.

Gopalan Gurumurthy is one such parent of two autistic children aged 14 and 23. “We have not witnessed abuse, but we fear it,” says Gurumurthy, explaining the need for a parent-driven solution. This spurred him and similar-minded parents to register a patch of fertile land on the outskirts of Chennai under Community Living Association for Parents of Special Citizens (CLAPS). The plan is to accommodate 40-50 families of children across the spectrum of autism, intellectual disability, cerebral palsy, mental disabilities and Down syndrome. “In our lifetime we would be creating a society for our children to live in,” says Gurumurthy.

The commune would sustain itself by having an individual beneficiary trust of ₹40 lakh for each autistic child. The cost would cover the living expenses of the child in a residency and a separate home for the parents within the campus. After the parents’ demise, the home would be resold to another family, thus replenishing the resource pool for the upkeep of the child.

Finding home

By evening, Kundra convinces Siyaram and Seema to meet Aman. The parents agree to take turns to meet him. Aman spots Siyaram from a distance and goes running to him like a horse let into the wild. His grunts and high-pitched sounds make it clear he cannot believe his eyes. They walk together until dinner time, going through the mango orchard, past the rooms, past the garden and park, their hands never unlocking for a single moment, the father speaking all through, filling in his son. That night, when Aman sleeps, he has his first seizure in three months. It is alarmingly high, he froths at the mouth, shakes and falls unconscious. An SOS spray puts him to sleep. The parents don’t sleep a wink, nursing him, talking through the night. Was it the excitement of their sudden appearance? What if this had happened in their absence and they weren’t informed? They cancel their plans to return the following day. They think of relocating to Hyderabad, renting an apartment nearby until the village comes up — options they have already talked through a hundred times.

After leaving Aman at the facility, they had been able to see him regularly through the live footage from the CCTV in his room. “When I sometimes see that he is unable to sleep, I just place my arm on my lap, and pat it as if he were sleeping on it... I’ve seen my telepathy work. He falls asleep,” says Seema, her eyes swollen from crying through the night.

But not all parents think alike. “What is the difference between animals and humans? The ability to reason is missing in these people. That’s why they are like animals,” another parent remarks to me, pointing to his 14-year-old son sitting beside him.

“Everything is fine here, the facilities are great. I only wish his care-takers talked to him as if he were normal. He would be so much happier then from within,” says Seema.