On 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, adapting 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 explo- ration 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 diag- nosed 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. 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, psychotherapist, 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 the networks are weakly connected, as does training the neural network. A certified clinician, therefore, is a must for proper protocol.
Parents recognise that rewiring their child’s cognitive circuits is crucial. Rewiring is akin to building a muscle in the brain for an action with repeated effort. “It’s similar to gymming for increasing muscle mass. Think of an electric circuit which connects to the training,” says Sadasivan, who provides cognitive training to build neuro plasticity (the brain’s capability to change and adapt over time) using a self-developed app called Rewire Brain Training. Likewise, Bubbles uses an IIT-Chennai-developed visual app Awaaz. Innumerable apps help children navigate “a world that is too much”. the networks are weakly connected, as does training the neural network. A certified clinician, therefore, is a must for proper protocol.
Parents recognise that rewiring their child’s cognitive circuits is crucial. Rewiring is akin to building a muscle in the brain for an action with repeated effort. “It’s similar to gymming for increasing muscle mass. Think of an electric circuit which connects to the training,” says Sadasivan, who provides cognitive training to build neuro plasticity (the brain’s capability to change and adapt over time) using a self-developed app called Rewire Brain Training. Likewise, Bubbles uses an IIT-Chennai- developed visual app Awaaz. Innumerable apps help children navigate “a world that is too much”.
Early diagnosis is key
The constant onslaught of stimuli—noises, colours, sights, spaces—in the world which any child navigates as a matter of course is too traumatic for a neuro divergent child. In ASD, diagnosis is based on rating scales, diagnostic tools and questionnaires. “The first signs of developmental delays is a sign to look for a well-trained clinical psychologist,” advices Barua. Sadasivan adds, “In the age group of six to 16, the confirmation of the condition must be by a well-trained clinical psychologist. For ADHD, cognitive skills and assessments further streamline diagnosis.”
As per DSM 5 standards (an international standard for classifying and diagnosing mental disorders) and the Indian Association of Clinical Psychology guidelines, Sadasivan, who co-authored the guidelines, feels assessment should include intellectual, cognitive, social, motor and academic parameters. She feels often that parents don’t bring the child in for treatment early enough, and ignore the tell tale signs fearing stigma or are in denial.
“Because of delayed diagnosis, by the time they do seek help, they have tried everything that works up to a point, before hitting a roadblock. Working on cognitive abilities over time changes the trajectory of mental development; children are able to act independently faster,” advices Sadasivan, urging parents to be watchful of developmental and behavioural markers, and go for a holistic approach. Calling out India’s academic-focused diktat, experts observe that children who do well academically are often undiagnosed of autism-related conditions until they are 13 or 14 years of age since social and interpersonal needs don’t come to the fore till then. Smita Harith, Head of
Digital Literacy, Bubbles Centre for Autism, cautions, “Measuring the success of a child academically is harmful.” While affluent Indian families can afford to spend time and resources, many other parents cannot. “I admire parents who are going all out for their child, devoting time, or even giving up careers. Their support helps the child to become more function-al,” observes Khwaja. Liz left her teaching job decades ago to focus on Alyx. Rythm quit Blackrock to be a full-time mommy.
Barua started her own organisation to address the attention-lacuna. Unfortunately the poor cannot afford such care choices. Surveys show that poverty and higher rates of diagnosed autism in India are correlated and that children from lower socioeconomic backgrounds are more likely to be diagnosed with ASD mainly because access to early intervention is extremely limited.
Each child is their own unique universe, and fitting diverse behaviours into a conditioned box is a death knell for understanding the disorder, stresses developmental behavioural paediatrician Mumbai-based Dr Samir Dalwai of New Horizons Child Development Centre, “This woke movement of ‘labelling’ has to end. There is no need to invent separate labels; it excludes the children from the society. They are kept at distance from the rest with a label sticking out. We must find out what is going wrong with our treatment of autism, or of ADHD. Instead, we cover it up with a label. That is dangerous.”
The cure conundrum
It is staggering news that many families still look for unverified cures and disregard scientific evidence. Instead of subjecting children to quacks, theories and beliefs, accepting the “child’s way,” getting professional help is the only way forward. “One should first accept that you cannot turn a neuro diverse child into a neuro typical one—their brains are wired differently. Stop trying to change, fix and make them like us. Instead, accept them as they are. Tell them you understand their behaviour, without conditions. Also, explain the consequences, and guide them on accepted behaviours,” advices Barua. Parents often insist that right “therapy” or going to a regular school will make their child normal. “This is not making them independent,” warns Khwaja. Many parents approach quacks, expecting a miracle. “Give them tools to navigate life. Not fully understanding neuro diversity, in itself and how it relates to your child does you and them a disservice,” urges Rythm whose son is slowly getting better, calmer, emotive, assertive, and has started using words.
“The greatest gift you can give your child is to be open to their way of being,” advices Liz. Imbibe autism, ADHD, learning disability from a neuro diverse lens instead of a neuro typical lens is her prescription. Open-aware parenting today means finding out what works for the child. “It might not seem like progress, yet, but keep your eye on the prize,” advises Rythm, adding, “We learn everyday. So raise the bar, change tactics. It is doing grave injustice to Ryley to expect him to be what we term ‘normal’. Look at him from his perspective, find out what will be the biggest driving force for him to survive. Work backwards.” Every few months, Rythm creates a list of what her child is struggling with. Goal posts shift, she refocuses. “We are constantly working to handle sleep and anxiety problems. We now address communication, reading, writing and pragmatic speech,” she smiles. Pragmatic speech is conversationally communicating in social situations.
Most often, finding the right services is tough, with parents unhappy with the quality and “promised” inclusion. India’s strong family structure can be a great foundation. Alyx’s parents Liz and Adrian have devoted time and effort to embrace and accept her difference. With corneal implants, surgeries, dashes to Emergency, the days brought crises. Now, the smiling and confident Alyx is a living testament to the open minds of her parents. “Support groups are important by connecting with others on a similar journey, finding resources and sharing experiences. Today’s need is to create a support system above all. Nayi Disha has 38 location-specific support groups to address such issues,” says Deo. It is not the child alone which is going through a trauma of its own, but the parents, too, are in living hell without most of society not understanding their travails or offering comfort. Liz's guiding lights were Dr Shoba Srinath and Dr Pratibha Karanth of Comm Deall, and Sarbani Mallick. “I would play Karadi Tales early on, strap her onto a baby chair, go for speech and hearing lessons, but there was not much information then,” recalls Liz, adding, “Don't be embarrassed to find a support system.” Smaller city groups offer connections, however, Mallick feels they are often tough to sustain, since “How much can an already fire-fighting parent juggle time and resources?” she asks. Deo implores, “Parents need to know they are not alone. Reassure them that they are doing the best. Let them feel seen.”
Child-based progress
Progress is an individual marker in the course of treatment. Improvement is a hazy term as each child has his own individual patterns. “If a child feels loved and accepted, it shows a willingness to learn and change,” Barua believes. A neuro-diverse child’s world is stark. They rely on an inner and outer world of constants—their “own” normal. Parenting them is a scramble to move away from boiler plate “normal”, or be enslaved by society's attitudes. “Acceptance without judgement, without conditioning is the only way to handle the situation,” stresses Liz who looks at Alyx’s world through the child's lens of discovery. “Their behaviour is their way of communicating. A meltdown tells you she is unhappy with something—find out what, why,” she adds.
All parents have the best intentions, and love unconditionally. But often for many of them, love is conditional—“if the child behaves a certain way,” observes Barua. This attitude sets the parents on a negative path—‘Don’t do this; This has to stop’. Saying no reinforces confusion, makes it difficult for the child to emotionally self-regulate. If a child is doing something wrong, explain in simple language. Offer a constructive alternative. “Take the negativity out, and see 50 per cent improved behaviour,” says Barua.
Routine is peace for neuro divergent kids. Ryley's favourite meal is pasta, no cheese. Or chicken nuggets. When new people are around or he hears loud sounds, Ryley lets off steam doing his own thing. Rhythm has accepted this behaviour. She travels with his favourite foods, games, and sticks to routine. “He has flourished. There are good days when it is incredible how responsive he is,” she smiles. For Liz, Alyx’s Intrepidness amazes her every day.
Routines are “amazing gifts”. “Teach them how to sit, eat, dress, talk, greet, brush, bathe, play; repeat the same pattern daily, orient them. Being haphazard, and complaining about their behaviour is counter-intuitive,” advices Barua, who insists on teaching children about privacy, safety. “Start a routine, till it becomes muscle memory,” she advises. A word of caution here to helicopter parents—‘Enabling’ will not help them become independent. Rythm recently took Ryley and her younger sister Raniya for the animation film Moana 2. Since Ryley cannot sit through a movie, she found a sensory showing of the film, with lights on, children walking around and taking breaks. These are special screenings of films adjusted for people with sensory sensitivities with less sound, brighter lights and space to move around. Transitions are tough, especially in autism. Conflicting instructions may lead to meltdowns. Therefore, be prudent, teach a new activity or change routine step-by-step… bridge the gap from what the child is doing, to the new activity, gradually. “A meltdown is not a tantrum. It simply means that he was promised something which was not given. Their behaviours are caused by us,” adds Barua.
Doing it right
In the craze for multiple therapies, the fact that the child is a child is often forgotten. It took Liz decades of trial and error to get where she is, and is now coaching other parents to identify skillsets, courses, talent, branding to empower the child. She gives talks, and insists on youngsters being in on all meetings. Many work on a “lifepaths” to offer a chronological, social, activity, ideal and aspiration-based journey with stakeholders. “Your mind is a limiting factor, not theirs,” says Liz.
However, therapy centres mushrooming everywhere is concerning. “What are they and how are they regulated?” asks Deo demanding governmental regulations and stringent protocols for licensing and monitoring therapy centres. Dalwai feels “a crackdown on all symptomatic approaches is the need of the hour,” adds Dalwai. With too much information around, Liz is categoric, “Tread carefully, seek reviews, accreditations, second opinions, your child’s responses... Create a safe space with a trusted support system. The child's connect with the therapist is important.”
The key requisites, according to Harith (with a master’s in special education from John Hopkins) are, “Awareness and a requirement by law to identify children that do not fit into the school system (like the US) and assimilate them early. In India, our laws lack implementation.” Schools have to rise up, and address this lacuna, but most of them are ill-equipped. “Every government agency has an element of disability, but are these agencies integrating and communicating enough in the right direction? Are centres connected? Does an anganwadi worker know where she can take her child?” asks Deo, adding, “The Sarva Shiksha Abhiyan and Right to Education are drafted beautifully, but remain on paper. Due to policies, the lower classes have a ray of hope. A mother might be called in as a shadow teacher. In reality, the child is just sitting in a corner since few schools have a special education and inclusivity setup.”
Some private schools have a buddy system to assimilate and supervise such children too. Geeta Jayanth, head Chaman Bhartiya School, Bengaluru’s special educational needs (SEN) team work closely with all the stakeholders and customise academic courses according to the student’s abilities both in class or outside. The National Policy for Persons with Disability, 2006, provides equal opportunities, and mandates counsellors. The ground reality is vastly different. There are not enough counsellors. Substitute teachers often act as counsellors during school inspections. Often a teacher without a degree in psychology is the examiner. Special educators, therapists and shadow teachers are very few in number. Until India develops to the point of accepting disabilities as a condition, not taboo, it will be an uphill struggle for doctors and parents to integrate children and give them the childhood they deserve.