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Culture & Living
In her new book Beyond the Blue: Love, Life and Autism, autism consultant and mother Gopika Kapoor combines her personal and professional experiences of working and living with autism. Read an exclusive excerpt below
After writer Gopika Kapoor's three-year-old was diagnosed with autism, she knew had to do something to help him and others like him. She joined the Mumbai-based Ummeed Child Development Center, which works with children with developmental disabilities, started out as a junior therapist, and worked her way up to Lead Therapist and Master Trainer. In her recently-published book Beyond the Blue: Love, Life and Autism, Kapoor combines her experiences as a mother, author, and autism interventionist to empower other families who may be dealing with a similar experience and give them hope. “I decided to write Beyond the Blue to help Indian families with autistic children learn about living what it is like to live with the condition and feel hope about the future,” says the best-selling author on her latest work. Read an excerpt from her book below.
Ask any autism parent to describe their life, and they are guaranteed to talk about it in terms of before and after.
Before the diagnosis and after.
Before I knew I had a child with autism and after.
When I look back on my own life, I cannot help but think of it in the same way. Because everything that happened after, has undeniably altered the course not only of my life, but that of my family as well.
But this is not about After. This is about Before.
I didn’t know much about autism. The most I knew about it was from a fabulous, heart-wrenching book called Daniel Isn’t Talking by Marti Leimbach, that I read overnight and recommended highly to all my friends. Not once did I think that the little boy in the book was even remotely connected to mine. After all, Daniel isn’t talking; Vir is.
Even if he didn’t always make sense. Even if his tantrums were often hour-long spells of crying that never seemed to end. Even if he shrieked with horror when I tried to get a T-shirt over his head. Even if I found it so much harder to connect with him than his twin sister Gayatri.
Gayatri means mother of the Vedas, and denotes energy, sunshine and warmth. My Gayatri, or Gaya as we have always called her, was just that—warm, cuddly, snuggling into my arms and cooing with contentment. Vir, which means brave, was a stark contrast to her, stiffening himself when held, often crying without reason, looking away—more than into—my eyes. He was my son, I loved him, and yet he seemed far away, so hard to reach.
And so, I often left him alone, lost in his own little world of trains, soft toys and obscure household objects that captivated him and held his attention far more often than I did. Gayatri was so much easier to engage with, and playing with her was so much more fun. And so, while I would try to draw Vir into play when all three of us sat down, more often than not he would wander away. And I would let him. This is one of the things that I most regretted after I found out Vir’s diagnosis, and with time, I have learned to let it go.
But this is not about After. This is about Before.
My life was like that of any young mother, revolving around her small children. Mornings were an endless routine of feeding, bathing and then feeding again. Evenings were about crawling in the grass at the club or riding emaciated ponies in circles around the horse park. I could not work, with two infants to care for, and while this occasionally frustrated me, I had made my peace with it. The highlight of my day was meeting my group of three friends, all mothers of children the same age as Vir and Gayatri, every evening, and chatting with them as we watched our babies crawl, then totter, then walk and then run around the lawns of the club. With three girls and Vir being the only boy, no one paid attention when he would play in the sandpit by himself while the others were building elaborate sand castles and creating stories of princesses and dragons.
Mohit and I had a hectic social life, and my in-laws and mother were only too happy to babysit while we went out and painted the town red. Occasionally, one of them would mention that Vir (never Gayatri) had been crankier than usual, a bit difficult to handle, but again we let it slide.
If you were to look at us, we were a striking family. A couple with their twins, a boy and a girl, a complete family. Look a little closer, and you could see the strain telling on us. Something was not right. I couldn’t put my finger on it, Mohit was in denial and it was eating away at me. If anyone pointed out that Vir was slightly slower on the uptake than Gaya, blaming it on the typical (but ridiculous) “boys develop slower than girls”, I would get unnecessarily defensive, almost to the point of being rude. When Mohit’s aunt asked me to check his hearing, as he wasn’t being responsive, I was outraged. It’s only now that I realise that this was a reaction to extreme fear – of my child being different, of him being less.
Of all the birds that exist in nature, human beings most resemble the ostrich, I believe, sticking our heads in the sand and preferring not to see what we do not want to. The first three years of our lives as parents, Mohit and I behaved like ostrich, refusing to acknowledge that there was anything amiss with our perfect family.
But then, like I mentioned, Aamir Khan made his blockbuster film. And the rest, as they say, is history.
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Autism Spectrum Condition (ASC–commonly known as Autism Spectrum Disorder, but I prefer to use the former term) is a developmental disability that can cause social, communication and behavioural challenges. Known as a largely invisible disability, there is often nothing about the looks of people with autism that sets them apart from others. However, look closer and you will see that the way these individuals communicate, interact, behave, and learn are different from most other people.
According to the Diagnostic and Statistical Manual (fifth edition), autism has been characterised by two main diagnostic criteria. In other words, individuals need to have deficits or characteristics in the following two areas to be termed autistic:
• Persistent deficits in social communication and social interaction across multiple contexts. This implies deficits in social-emotional reciprocity, verbal and non-verbal communication and in developing, maintaining and understanding relationships.
• Restricted, repetitive patterns of behaviour, interests, and activities. This constitutes repetitive movements, use of objects or speech, insistence on sameness, restricted or fixated interests, and hyper-reactivity or hypo-reactivity to sensory input.
To simplify, let me put this in the context of a child I have worked with so you can understand what I’m talking about: R is a boy who is verbal, can read and write, but finds it difficult to ask for a glass of water. He repeats phrases he has heard on YouTube several times, before asking for water in only one word. He can answer set questions, like “What did you do in school today?”, and gives the same answer every day—“Play”. R has only one friend, a girl two years older than him, with whom he plays a catching game every evening. If she suggests another game, he walks away. R enjoys pulling strings off pompoms and playing with them, holding them up and watching them fall to the ground. He does this repeatedly for close to an hour every day. If his father tries to play with a different toy, or even play with the strings differently, R has a huge ‘meltdown’, screaming, kicking, even biting his father and himself. He calms down only when the strings are returned to him and he is left alone.
R, as we can see, is autistic and displays all the characteristics of autism. He has difficulty communicating and maintaining a relationship with his father and friend. His interests are very limited–a piece of glittery string, which he plays with in a fixed, particular way. When this is changed or removed, he cannot communicate his protest, and so has a meltdown.
Popular culture has sometimes romanticised the concept of autism, in particular as savant, a syndrome where an individual is socially awkward but demonstrates abilities far exceeding the average. This is most famously captured by Dustin Hoffman’s portrayal of Raymond Babbit, a savant with extraordinary abilities of recall, and more recently by our home-grown version, Rizwan Khan, played rather well by Shah Rukh Khan, who portrays a young man with extraordinary technical skills.
The truth is that very few individuals with autism are gifted, and even those who are, may still have a lot of the challenges that the condition characterizes. The key with autism can be summed up in two words: early intervention. The faster you intervene, the better the chances are of being able to teach children. Having said that, I have seen children learn new skills at any age. The fact is that they can learn and must be taught–in any way that gets through to them and that they understand.
Excerpted with permission from Beyond the Blue: Love, Life & Autism by Gopika Kapoor (Notion Press). Order here