Independently yours

It’s the Saturday before Diwali, and we’re at Khan Market in Delhi. The ‘we’ that I’m talking about consists of the two you see in the picture — Rahil Verma, 24, autistic and Abhimanyu Srinivas, 21, autistic. They’re holding hands and walking because we’ve asked them to, and they’re both in a compliant frame of mind. Behind them, or actually traipsing practically alongside, are Rahil’s mother Minnie, and my ‘good self’ aka Abhimanyu’s father, Madhusudan.

We wind our way to a lunch date at a popular café. Suddenly Rahil, who is in a tee and shorts, grins at a group of young women coming towards us, sticks out his hand and says, “ Hello, aap non-veg letey ho (Hello, do you eat non-veg)?” There’s a nonplussed but fairly polite grin and silence from the other end, which suggests ‘strange’ but these people look okay so it must be okay. I step in and make those classic ‘parent of special child’ gestures — an expressionless face and a muttered, “This is Rahil, this is Abhimanyu, and we’re heading for lunch.” It works. Usually.

The boys are quite tall and personable, and, as is the case with classical autism, they ‘look’ like any other young fellow but give themselves away as ‘people with special needs’ the moment they are in ‘social interaction or communication’ situations.

The same sequence, or versions thereof, are repeated as we get into the restaurant and find ourselves a table. Some old college friends of mine from the ’80s join us, and orders are placed. Rahil is telling himself, repeatedly, “Say hello to strangers but no shaking hands.” Suddenly Minnie turns to me and says, “Every time Rahil does this, that is, greets a stranger on the street, I wonder how it will work out? You cannot plan for it at all, you can just talk, and anticipate.”

Abhimanyu is lower than Rahil in relative ability terms. As the parent of a child with autism, one quickly realises that autism is a spectrum — that no two people with autism are the same. Rahil and Abhimanyu have similar routines, such as going to school, engaging in activities like occupational therapy, yoga and sport. Rahil is fairly proficient at tennis, squash, golf and a bit of cricket and football. Abhimanyu likes swimming, yoga and basketball. Abhi hasn’t shown much aptitude for academics or, let’s say, we haven’t been able to find a way to get him interested. Rahil can use mobile phones and loves to strike up new conversations. Abhi can’t dial numbers on the phone. Rahil can complete sentences and answer basic questions. Abhimanyu is barely verbal, in that he can knit together two-word combinations, like khaana khaana , pasta khaana (want to eat pasta), baahar jaana (want to go out), swimming jaana (want to swim), gaana sunnaa (want music), among others. Abhimanyu has to be prompted to say good morning and is now worldly wise enough to say, “I’m fine,” when he is asked, “How are you?”

The spectrum of people with special needs, and people with autism, could stretch in ability terms from ‘below’ Abhimanyu, to way beyond Rahil. That is, from young adults who can barely make their needs known to those who are expressive but still need assistance in meeting those needs, which could range from basic ablutions to choosing what to wear, going to school, and so on.

While no official figures are available, the number of children with special needs growing into young adults does run into a few crores, if not a few hundred crores. The Centres for Disease Control and Prevention, US, notes that about one in 68 children in the US has been identified with autism spectrum disorder (ASD), according to estimates from CDC’ s Autism and Developmental Disabilities Monitoring (ADDM) Network.

What next?

And that gets me thinking about a major concern of ours: How to talk to a wider community — especially parents of younger special needs children — about planning for their future, their adulthood? What are our fears and worries? Are there certain set procedures and lists of things to be done? How does one provide for the individual and collective futures of people who are not exactly ‘helpless’ or totally dependent but, at the same time, need a bit of a family and social support to conduct ordinary but fulfilling adult lives?

Depending upon where you are on the socio-economic ladder, the options for a secure future consist of a few select group homes with varying facilities, depending on their access to resources. Unlike in the case of senior citizens, where a certain seamlessness appears to be evolving in terms of a transition from organised family lives to retirement homes across India, or at least in middle-class India, there doesn’t appear to be a societal game plan to cater to the needs of special needs children, who are sooner or later going to be young adults, and would need to be part of a community support group that will help them lead as independent a life as possible.

We lived in a rented flat in south Delhi and spent all our savings on therapies, schooling, travel, and so on, leaving us with nothing at the end of the month. We have taken the usual safety steps like investing in provident funds, mutual funds, to ensure that our son has financial backup. But what happens when we are not there? What happens then to these young adults who are judged as being unable to speak for themselves?

A little over a decade ago, when Abhimanyu was close to 11, we started thinking about the distant future, in the sense of his adulthood. For various reasons, we crossed out options of his living with close family or friends. Essentially, we started to look at long-term adult residency programmes.

Rahil and Abhimanyu have both done stints at Arunima in Dehradun ( projectarunima.org ). These stays have ranged from a weekend last year to three weeks this summer. They have both been happy at Arunima, which is essentially an independent bungalow with many rooms, where autistic young adults (boys and girls) are initiated into the business of independent adult living, right from waking up in your own bed (without parental supervision) to brushing, bathing, dressing, having breakfast, and then engaging in academic or vocational activities.

The spirit of Arunima is embodied by its founder Aparna Das, whose inspiration for setting up the institution was her sister Runi, short for Arunima. It did help that Abhimanyu had met Das and some other young adults from Arunima at a yoga camp near Nainital last summer. So the first short weekend visit last autumn was like a recce. And, as it turned out, a recce more for us parents than him. He didn’t seem to miss us during his stay there. And he spent the weekend cheerfully. Which gave us the leeway to think of the three-week stay this summer. We dropped Abhimanyu on June 14 , he waved bye to us, and that was that. While we were anxious, and made phone and Skype calls, Das and her team reported that Abhimanyu had settled well into the routine at Arunima. The two significant gains were that his meal-times were much more regulated than at home, meaning no unregulated, frequent grazing. The spilling at the table too came down considerably. Abhimanyu also learnt to spend an hour or two of ‘rest time’ in the afternoon. And that’s the sight we came upon when we went to fetch him in early July — something we’d never seen him do earlier. He was lying on his bed, quietly, just like his friend and roommate Ashu, on the other bed. A big achievement.

A web of help

What we’re trying right now is to give Rahil and Abhimanyu an independent life in the organic community they’ve been a part of for as long as possible. There are innumerable opinions on what is better for individuals (autistic or otherwise) with special needs — do they continue into adulthood as part of the societies they’ve grown up in, or do they move into large community homes populated with people of their own ‘kind’. I don’t know the answer as yet.

Apart from settling that issue, though, there are a few other steps that can be taken. First off, you have to take a judgment call as to whether or not your child is going to be independent or head toward independent adulthood at age 18 and after. Though this sounds simple, it can become a complex, evolving question. And the right answer may emerge only around 18, or perhaps even after that.

If the youngster is going to need some level of ‘assistance’ through life, one of the first must-dos is to undertake a ‘guardianship’ for him/her as they turn 18. This is a deed executed in law whereby the parent or caregiver executes a legal document under the seal of the local magistrate, taking over full rights for running bank accounts, and so on, for the young adult.

Simultaneously, what’s necessary, but doesn’t often happen in time, is the setting up of a trust — a circle of family, friends and caregivers who can, and will step in whenever needed, or whenever decisions need to be taken concerning issues of daily living.

And I leave you with a final story. We’ve just got Abhimanyu’s Aadhar card made. So there we were at the UID office in Delhi, and the girl doing the application procedures wanted Mr A (as we sometimes affectionately refer to him) to look into the camera for the mandatory picture. After great difficulty and persuasion we managed that. Whereupon the need arose for an ‘iris’ picture. Shall I just leave it here by saying that in the end we did manage that? And the fingerprints. For the rest, for the future of the lives of adults with special needs, it is, I think, time for society to look into its own self.

(Madhusudan Srinivas is a parent of Abhimanyu, 21, based in Delhi)

Abhimanyu’s weekday schedule

7 to 8am— Wake up (depending upon the effect of the seizure medication)

8 to 9:15am— Wash, bathe, dress for school

9:30 to 4:30pm— Attend Ashish Centre in Dwarka; Lunch from 1 to 2; 2 to 4:30pm engage in vocational activities such as making Diwali cards, items of clothing, etc.

5:30pm— Home and a huge meal

6 to 6:30pm— Rest

6:30 to 8pm— Leisure activities, such as walking, roller-skating, visiting neighbourhood park, swimming with dad in summer

8 to 10pm— Attempt to sleep

(Of course, the schedule often goes for a toss)