Author, art critic and autism activist, Juliet Reynolds dons several hats. But she wears them with considerable ease as all her pursuits have evolved over the years through her experiences of living a rather unusual life for a woman of Irish-English descent in India.
For Juliet there were no trappings of a ‘gori memsahib’ in a once colonised country. She chose a life beside her Bengali husband Anil Karanjai, a struggling artist of the 1990s, in a small barsati in New Delhi, sometimes unable to make ends meet.
Recounting the saga of yesteryears, Juliet speaks with the same honesty as she writes in her recently released book, ‘Finding Neema’. It is an unusual story of how the life of the couple, who never wanted to have a family of their own, got intertwined with that of an “exceptional” boy who she and her husband subsequently adopted and found to be autistic.
“In the early 90s there were no places for diagnoses of autism… When I first saw him there was something so beguiling about him that I took an unusual interest in this tiny person… You should see him now at Inspiration – the independent living centre in Dehradun -- he is one of the eldest and has a Peter Pan like image, identifies with all the younger ones and looks after them.”
Neema was son of the live-in domestic help, Poonam. Non-verbal but high functioning, the little Nepalese child stole his way into the lives and hearts of the couple. Belonging to a migrant, dysfunctional family, where the mother shifted partners frequently, Neema from his early years had seen poverty, abuse and neglect.
The couple’s search for what was ailing Neema in a sense ran parallel to the growing awareness of autism in the country. The first doctor Neema was taken to categorised him as mentally challenged and recommended that Neema be under a more stable charge than his mother who would wander of towards yet another partner, leaving the child vulnerable and confused. Coincidentally for the couple, around the same time Poonam received a job offer to go to Dubai and requested that Neema stay back with them. The couple too by then had decided to be his guardians.
Juliet recalls the severe behavioural glitches that Neema suffered from, not realising at the time that these were symptoms of autism. “His being unable to speak appeared to be less of an issue than his delayed physical development… he was yet unable to walk properly, requiring his hot clumpy shoes with callipers to get around, and he still felt safer negotiating the stairs in a sitting position. He also manifested both acute and chronic intestinal problems. Anil had been instrumental in curing Neema’s blood dysentery, but from that time on he was often severely constipated, a condition that could turn without warning into bouts of diarrhoea. Had we then known about autism, we would have been aware that gastrointestinal symptoms of this kind are widespread among those diagnosed with the disorder,” she explains in her book.
It was much later after Neema attended a special school for the mentally challenged in Delhi and “showed no progress” that the couple realised he was autistic. It was around the same time that Merry Barua, mother of an autistic child, along with others started the first special centre for autism in Delhi – Open Door – and Neema was among the first students. From then on the couple’s journey with the young boy followed an upward trajectory.
“He was endearing while he was growing up, fun to have around, but there were times his behaviour forced me to go over the top with him. I cringe with shame when I think of that… how at times I allowed him to bring out the impatience in me,” says Juliet, brutally honest as she recollects Neema’s at times exasperating behaviour, an experience common to many who parent autistic children.
When Juliet unfortunately lost Anil in 2001 and had to cope as a single parent, Neema came to her aid on many occasions. At Anil’s funeral, the young boy behaved as if he knew exactly what he had to do, “Everyone noticed it,” she says as she relates another time when Neema smitten by a young girl bowed before her and kissed her hand.
But then, as she admits and quotes Simon Baron-Cohen on her book cover, “We have moved away from the idea that there are people with autism and the rest of us. There is a spectrum, and we are all on that continuum.”