For both autistic individuals and their families, the world is a difficult place to navigate

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Published:
03 Nov 2017
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Autism is not a single condition; it comprises a spectrum of disorders. The term ‘spectrum’ is used to refer to the differing severities and patterns of behaviours manifested by people with autism

When her first-born son was around two, Neelam Gautam noticed that he was becoming increasingly compulsive about the food he ate and the toys he played with. And even by the time he was three, he hadn't uttered a single word. He had become less affectionate and hardly made any eye contact. By the time her son was four, Gautam had visited every single speech therapist in town, but no one could help her child. In 2007, when her son was five, he was diagnosed with Autism Spectrum Disorder (ASD)--a term she'd never come across before. She started researching as much as she could about autism, but still couldn't make sense of her son's condition. "I was devastated because my only son was diagnosed with a lifelong disability with no cure," says Gautam.

According to The Centers for Disease Control and Prevention (CDC) in the US, ASD affects one in 68 children worldwide. It's a condition that is far more common than most people think it is. It is estimated that nearly three lakh Nepalis are currently living with ASD. So it's highly likely that someone most people know, work with, or love has this condition. For both ASD individuals and the people who care for them, dealing daily with the particulars of the condition demands a lot out of them.

What is Autism Spectrum Disorder?

"Autism is a neurodevelopmental disorder," says Dr Sagun Ballav Pant, a consultant psychiatrist at TU Teaching Hospital. According to him, autism is not a single condition; it actually comprises a spectrum of disorders. The term 'spectrum' is used to refer to the differing severities and patterns of behaviours manifested by people with ASD. 

Ten-year-old Bhola* is a student at the Special Education and Rehabilitation Centre for Disabled Children (SERC), Baluwatar. According to Kalpana Basnet, the founder of the school, Bhola, like 40 per cent of children with ASD, is nonverbal. Like most children with ASD, Bhola is a strong visual learner, and communicates with his teachers and parents by touching pictures and using flash cards. And whenever he gets upset, he will start rocking his chair and will bang his head repeatedly. Then there's Sushma*, 8, who speaks so quickly that she will not even filter out the inappropriate commentary that runs from her mouth. Binayak*, 7, can multiply numbers in his head with ease; yet, he shuts down if he has to make conversation. Because there is such a wide variety of symptoms and manifestations, no two people with ASD are alike.

Dr Pant says that ASD is a lifelong developmental disability that affects how children communicate with and relate to other people. "It also affects how they make sense of the world around them," he says. Many things that an average person takes for granted, such as body-language norms and the use of metaphors, can be difficult to decode for people with ASD. For autistic children, the world can be a hodgepodge of people, events and places. Depending on where they lie in the ASD spectrum, autistic individuals may have various developmental challenges. Although some autistic children have a good memory for words, they're often unable to comprehend their meaning. While a deaf and blind child can receive and respond to social signals by making use of common sense, autistic children don't have this common-sense understanding and struggle with processing information. For some autistic children, many everyday tasks can be close to impossible to perform, while some tasks that are difficult for most people can be a breeze for ASD children. 

Neelam Gautam


According to Dr Karuna Kunwar, a psychologist at the Centre for Mental Health and Counselling Nepal, Thapathali, children with ASD can be very sensitive to environmental stimuli such as noise, light, temperature, and so on, while others can be non-responsive to the same stimuli. Since they have difficulties dealing with some of these sensory data, they dislike spontaneity and find refuge in a predictable routine. Dr Kunwar says that autism's most obvious signs tend to appear when a child is between the ages of two and three. In some cases, ASD can be diagnosed in kids as early as 18 months. Some developmental delays associated with autism can be identified and addressed even earlier. According to Dr Pant, most newborns look at their mothers with a sense of familiarity and make eye contact--this is a good sign. ASD babies, however, display a lack of responsiveness and may not make any eye contact with their mothers. And because most newborns have a guise of a seemingly healthy exterior, the aforementioned symptoms can easily go overlooked. 

Dr Sagun Ballav Pant


High-functioning autistic individuals

Children with 'high-functioning' ASD have evident shortcomings when it comes to social communication, and speech and language development, but they have normal IQs. Some high-functioning ASD individuals are called 'autistic savants'--autistic individuals who have extraordinary skills that are not exhibited by most people. But it's essential for caregivers to take into account that the same children may have difficulty with social cues, for which they might need specially designed curricula in school.

According to the Autism Research Institute of California, there are various forms of savant abilities: to do with mathematical calculations, memory feats, artistic abilities and musical abilities. A mathematical ability that many people with ASD display is calendar memory. If they are asked a question like, "What day of the week was May 22, 1961?", they can come up with the correct answer (Monday) within seconds. Others can multiply and divide large numbers in their heads and can also effortlessly calculate square roots and prime numbers. Studies suggest that notable figures in history such as Sir Isaac Newton, Charles Darwin, Michelangelo, Andy Warhol and Albert Einstein may have been on the autistic spectrum. 

What causes ASD? 

Over the years, ASD has attracted considerable interest from the public as well as from scientists; and efforts are continually being made to elucidate the causes of autism. But even today, every single paediatrician, geneticist, researcher and psychiatrist is stumped when asked about how autism is actually caused. "There is probably not one single answer," says Dr Pant. According to him, just  as autism is a spectrum, there's also a spectrum of etiologies. According to epidemiological data, one of the causes of autism is advanced paternal age, meaning that the father of the child is too old at the time of the baby's conception. In addition, says Dr Kunwar, another critical period during which autism may develop is when the mother is pregnant. During that period, while the foetal brain is developing, exposure to certain chemical agents can increase the risk of a child's developing autism. Studies suggest that valproic acid, a medication that mothers with epilepsy sometimes take, can increase the risk of their child's being autistic. 

Dr Karuna Kunwar


In many families, there appears to be a pattern of autism or related disabilities among siblings and twins, supporting the theory that the disorder has a genetic basis. So the question now is, how can we start to identify what exactly those genes are? According to many studies, certain individuals can actually possess mutated genes that were not passed down from the mother or the father, meaning, the mutation happened after conception. And according to Dr Pant, people with certain genetic disorders such as Fragile X Syndrome, Rett Syndrome and metabolic disorders like phenylketonuria are more susceptible to getting diagnosed with ASD.

Though great advances have been made in ASD research, the root cause still remains a mystery waiting to be unravelled. And while the discovery of the cause won't change Neelam's and her son's lives overnight, it will at least liberate them from the everyday confusion surrounding autism, and provide them with a better understanding of the condition.

Interventions

There is no cure for autism, and it is a lifelong disability, but early intervention will make the life of both parents and kids with ASD easier. Interventions usually comprise a combination of different approaches. In some cases, identifying the genes of autism is important, especially to figure out what medications should be prescribed. However, that's not the only solution, says Dr Kunwar. In addition to medication, it is also important to use educational strategies. Kids with ASD are wired differently, and autistic children will have to find their own special methods for navigating life situations. But they can also learn these skills if caregivers educate them in a way that serves them best. 

Kalpana Basnet


"Thankfully, new technologies offer a lot of opportunities for individuals with autism. We have started using iPads as most children with ASD are visual learners," says Kalpana Basnet, of SERC, where speech and language pathologists provide training to improve children's verbal and nonverbal communication skills. Behaviour analysts at SERC make use of Applied Behaviour Analysis (ABA) therapy to reinforce positive behavioural patterns in children. Basnet, who is also a physiotherapist, focuses on developing children's gross motor skills (movements that involve the muscles of the body, arms and legs) to improve motor coordination, range of movement and balance. "It is essential to inform the parents about which treatment works best for their kids. This way, we can also train the parents, who in turn can practice what they've learned on the kid," says Basnet. 

The challenge for parents with ASD kids

For poorer parents, especially those living in rural areas, taking care of ASD children can be exceedingly difficult. Oftentimes, both parents will have to give up jobs that ask them to be away from home, just to be close to their kids. But even in Nepal's urban centres, parents of ASD kids have a lot on their plate. Sijan Shakya's son spent most of his time lying on the floor, lining up toy cars, and resisting any attempt made to communicate with him. "He would growl in protest and would have full-blown meltdowns if we, say, went to the wrong grocery store; he would insist on playing with the same toys and eat the same food," says Shakya. Her son slowly started to prefer isolation, playing and doing things by himself. "I would make him give me kisses and be more responsive to me," she says. Shakya had no idea how to react to her son's condition. A few days before his birthday, Shakya's son was diagnosed with ASD. That is when she truly understood why her son was the way he was. 

Sijan Shakya with her son


"Discovering that your child is autistic is a difficult pill to swallow. You have to walk a road that's nothing like the norm. All your previous worries become meaningless, and your only focus becomes your child," says Shakya. In an attempt to save her son from the autism abyss, Shakya went to India for a year-long training session for parents on how to deal with autistic children. She later joined a parents' support group called Autism Care Nepal (ACN). Established in 2008 in Gairidhara, ACN is run by parents with autistic children and provides diagnostic tests, counselling and training for families. Today, Shakya works at ACN as an educational coordinator; she is also Nepal's first education specialist. There are many other such parents working at ACN, such as Neelam Gautam, who is now the General Secretary of the organisation. Gautam's son is turning 16 soon. Because her son is transitioning into adulthood, she is perpetually beset by the one fear that haunts all parents of children with ASD: What will happen to my children when I am gone?

(*Names have been changed)