Voices Anand Neelakantan Ravi Shankar Devdutt Pattanaik Preeti Shenoy Dinesh Singh Mata Amritanandamayi MAGAZINE Buffet People Wellness Books Food Art & Culture Entertainment NEW DELHI March 2 2025 SUNDAY PAGES 12 In a society of prejudice and ignorance, parents of children with mental disabilities lack the muchneeded support system while taking on the uphill task of gifting their children a kinder and gentler world Parenting a Beautiful Mind O By Suruchi Kapur-Gomes n a sunny day, Alyx Albuquerque’s boundless joy is infectious. She bounces up from her computer at her design studio, Pumpkin Patch in Bengaluru. Her designs on trays, ornaments, pen stands, paintings, coasters, mugs, calendars, are on display The 26-year-old ushers you to write in her guest . book, calculates the bill—even adds a freebie bookmark! Her shadow teacher, Rebecca, now her colleague, helps Alyx in this entrepreneurial venture. Her mom Liz is a call away After over two decades of trial and tribulations, learning, adapt. ing and accepting Alyx’s autism spectrum disorder (ASD) diagnosis—difficulty with executive functioning, speech, attention, planning, movement, reasoning, sensory reactions, a lack of social interaction, and physical challenges—today, her confidence and ability to embellish life is unequivocal. It was the no holds barred exploration that her parents Liz and Adrian were steadfast on that was instrumental. Giggling, Alyx chirps, “Gween-Gween,” pointing to Rebecca’s hoodie, a bright green. She communicates through colours, shapes, and resonating cues. Pumpkin Patch has seen this quiet-as-a-mouse girl upskill. Can society be kinder to families with a child who is neuro diverse—a condition largely associated with autism? Parenting children with special needs is an uphill battle; fighting conditioning, norms, stigma and denial. As parents embrace and celebrate the child’s difference, the quagmire of unpredictability grinds hard into their resolve. And society judges. Yes, even small acts of kindness, like giving a mother and child a seat on the bus can go a long way . Parenting, tough as it is, its tenets are universal. For a child with special needs, the requirements more. “Autism has no individualised intervention, there is no formula to fit all,” cautions Sarbani Mallick, founder/ director, Biswa Gouri Charitable Trust, Bubbles Centre for Autism in Bengaluru. A usual complaint many have about Indian doctors is the absence of sensitivity Forget about bedside . manners, the diagnosis is conveyed to parents who have just learned that their child has a disability is conveyed with brutal directness. Prachi Deo, executive director, Nayi Disha, asserts, “Not just newly diagnosed parents, but all such families face severe emotional trauma. The disability is informed with no sensitivity and many are told, ‘The child will be this , way nothing can be done,’ without offering a sliver of , hope. Such diagnosis has to be given with caution, care and empathy enlightening parents on the way forward. , We need systems, where a parent is oriented on life stage challenges, transition to adulthood, with hope and supportive eco systems.” Rythm Rampersaud, mother of 10-year-old Ryley , diagnosed with ASD, learns and resets her mind daily . “Follow the basics of parenting, and amplify that by 150 per cent. Be open, learn, change course, with your child as the centre,” she says. Akin to bracing for certain impact of an inexplicable and confusing universe, today parents across India dare defeat by embracing , new ideas, plucking up courage in the face of anguish, embracing conflicting thought, refuting conditioning and, above all, relearning. With little or no support, every day battle lines are drawn, and there is a literal , re-learning of the child’s mental and physical alphabet. Shun stigma Liz, Alyx’s mother terms the savage stigma “wounding,”—since it excludes the child as not normal. “It hurts, and can break you. Our world does not give such children a chance. They put them in a slot, an image and rhetoric follows, which affects it affects in overall personal integration,” she rues. Founder director, Action for Autism, Merry Barua’s son was diagnosed with ASD 40 years ago when expertise was non-existent. “Before, it was a standard assumption derived from Bruno Bettelheim’s now abandoned theory that a lack of emotional warmth, especially from mothers, is what causes autism. Scientific evidence now points to epigenetic and genetics,” recalls Barua, who got her hands on The Autistic Spectrum by MD, psychiatrist, Lorna Wing (founder Autism Society , UK). She then trained in the US, and returned to start a home programme. “I explored the whys of autism. I According to studies, around 12% Indian children between the ages of two and nine have a neurodevelopmental disorder (NDD), or neurodivergence, a significant health burden in India which include learning disorders, attention-deficit/ hyperactivity disorder, autism spectrum disorders, etc would not give excuses or apologise for my son’s behaviour. I accepted his difference,” recalls Barua who authored an article in a national daily which connected , her with families, and professionals. From this evolved Action for Autism in 1991. Epigenetics plays a key role in neuro development disorders, the influence of the environment on genes or inherited genes can change the biochemistry in the brain. “Most parents are in denial. There are two types; one that seeks interventions, doctors, therapists, pilgrimages and religion for an ‘elusive’ cure. The second type, understands and accepts the diagnosis, and relearn care giving within the constraints of the limitations of their child,” says Dr Ali Khwaja, chairman, counsellor, Banjara Academy Dr Nikhath Fathima, psychothera. pist, family therapist at Bubbles says, “Denial is pervasive. Those from Kerala and West Bengal, due to higher literacy might keep an open mind, but most , parents are isolated when grappling with the diagnosis. In my experience, when parents do not accept the scenario, the blame game begins and they turn to superstitions for a cure.” Since most children mirror their parent’s anxiety , support groups, home visits and individual counselling help to bridge the gap at Bubbles. Fathima adds, “What is worrying is parents don’t get any breathers.” Also hugely concerning is post-diagnosis (as a child) to assisted living (as an adult). “There is no help from the government. A parent’s mental and physical health is affected badly My concern is that parents are burning . out, over-exhausted by juggling life, work, family dynamics; all with no help,” reveals Mallick, currently working on gathering child care support for families during weekends when they might want a mental break from the grind. Assisted living and residential facilities are virtually unavailable in India. “Assisted living is the elephant in the room, since all parents worry about what will happen to the child after they are gone. It is a big unanswered question,” explains Deo. Understanding the disorder Dr Akila Sadasivan, director, Samvidh Psych Services, explains neuro development disorders: “Something triggers an atypical neuronal migration (birth defects caused by abnormal migration of neurons).” This alters the way the neural connectivity and functions of the brain. “There are three key circuits involved in a child’s development. Executive control by which while a multitude of actions are going on around the child, its attention is solely focused on what the child is doing. The second is the default one, doing nothing; the mind wandering, and a more self-absorbed autobiographical memory The . third is the primary system which acts as a switch between the executive and default. Most of us are able to effortlessly switch between both seamlessly The . salient and default networks have no real tasks, while the executive control is task-positive. Thus, when one is active, the other has to be inactive. The switchover is critical. Most often with ADHD, autism or learning disability the switch comes at a cost,” Sadasivan , elucidates. Occupational, speech, physical, hearing and cognitive therapy help build connectivity especially if , Turn to page 2 Rising Up Stronger Against All Odds Alyx Albuquerque runs her own design studio, Pumpkin Patch in Bengaluru. Her designs on trays, ornaments, pen stands, paintings, coasters, mugs, calendars, are on display. The 26-year-old’s mother, Liz, left her teaching job decades ago to focus on Alyx. Along with her husband, Adrian, she made it her life’s calling to embrace and accept her daughter’s difference Today, Alyx gets help from her shadow teacher, Rebecca, in this entrepreneurial venture. After over two decades of trial and tribulations, learning, adapting and accepting Alyx’s autism spectrum disorder diagnosis—difficulty with executive functioning, speech, attention, planning, movement, reasoning, sensory reactions, a lack of social interaction, and physical challenges—today, her confidence and ability to embellish life is unequivocal. “Our world does not give such children a chance. They slot them, an image and rhetoric follows which affects personal integration.” liz Albuquerque