What It’s Like to Be Working Mother With Neurodiverse Child In India

"I have been very passionate about my work, I worked for 11 years, but it's been over two years since I took a break. You cannot have both, either. I could work or take care of my special need kid. Kids require complete attention, with a job demanding your full time, doesn't root for balance", says Madhumita Nath, who is on a career break and has a 4-year-old daughter with Autism.

Nath lives in Guwahati with her spouse and two children. The 39-year-old had been working as a social worker with developmental NGOs. When her daughter was diagnosed with autism, she had to quit her job to be there for her daughter.

Nath's daughter was eight months old when she was first diagnosed with Global Development Delay (GDD). Later, at the age of 2, she was diagnosed with Autism. Since then daughter has been receiving therapy. Nath says, "therapy goes on for ages; once it is started, you have to be actively involved."

Chayanika Baishya is a Special Educator and Behavioural Therapist, currently working with Ashajyoti NGO, Guhawati. Baishya says, “It takes time for a caregiver to accept the child's disability, an abrupt disturbance strikes their emotional balance, and it takes a while to reorganise life. 95% of the time it is only mothers who accompany their children for therapy, men are aloof. For mothers too it is difficult. It takes a toll on their health, the relationship with husband and family.”

Mugdha Kalra, a Broadcast Journalist and Disability Inclusion Trainer says, “Indian society is not at all empathetic towards the caregivers for nobody sees how their lives change post the diagnosis. I have interacted with several moms and in the majority of cases if they are working it is to financially support the family. Most women give up on working or ambitions and dreams to look after their children. If you are not working to make ends meet then you are expected to dedicate all your time to your child."

Kalra further added, “In my journey as an autism activist I have always prioritised the mental health of the parent. Over a period of time, I have realised that our country has several interventions available for children If parents choose to accept the diagnosis and embrace the changed life.”

According to the World Health Organization, 1 in 100 children globally have an autism spectrum disorder, also the Action for Autism estimates that 18 million Indians are on the autistic spectrum, and their primary caregiver is a mother.

Challenges Of Working Mother With Neurodiverse Child

Parvathi Siddharth has been a working mother and catering to the needs of her child diagnosed with Autism. She worked for 10 years in IT companies, and after his son was diagnosed, she took a gap and later started working again. Parvathi has changed three companies to find the right one, where she can balance work and childcare. Parvathi says, "Currently I am on 10 days off until I join the new company. I have been switching jobs because have been tough to balance my schedule. I also changed my domain from IT to admin to adapt to this new situation."

Parvathi's schedule is jam packed. Her day starts at 5 am and ends at 10 pm. The schedule is jumping from working hours to providing her kid with food, pick and drop for therapy, and class, doing activities with him, and every day preparing him to acquire new skills to become independent. Parvathi confesses she does not get time to catch a breath. She says, "There is no scope for relaxation. I had to skip lunch to pick up my son. At a time when it becomes overwhelming, it's just a weekend where I hit the café and read."

For working mothers, a major challenge is balancing everything, and the system does not provide enough support for the caregiver. Parvathi has still not revealed about her child at the workplace, even while giving interviews, she never mentions her special needs. She feels it will hamper people's perception of her capability. She adds, "India is still not open to mothers; hard-working people are judged even over a single mistake; being a woman and also a mother of a special need kid gives them a reason to point it out. It can demean your work; people can pass judgment. No one wants to hire special needs, child mother. The company policies still lack the inclusion of working mothers like us."

Keerthana Kolli also faced a similar challenge. She says, "There is a bigger drill of therapies and teaching and stimulating the child and engaging them positively too! Even employers in most companies are unaware of the struggles and hardly make any accommodations specifically to cater to these difficulties."

Keerthana Kolli is currently working as a product manager after five whole years of professional break. Earlier she worked as an architect but now had to adapt to the situation and make a career change. She says, "People call me a changemaker, but when all the blinded conventional methods are trashed away from your life due to your child's differences in support needs, the road not taken has to be taken. It's an intelligent adaptive choice rather than about being a changemaker."

It is not just the workplace where inclusion is required, at the societal level also the lack of awareness and acceptance plays a major hurdle for the caregiver. The therapist, counsellor, schools, extra curriculum coaching, and government need to be more inclusive. 

Mugdha Kalra said, “But caregiver inclusion remains a big challenge. Are our corporates aware of caregiver fatigue? Do they recognise that some of their employees who are also committing their lives to take care of others are indeed taken care of? We need flexible working hours, better health packages, flexible leaves, and mental health interventions available at work for caregivers.”

Keerthana says, "For special mothers like me, the situation becomes grimmer. For children with disability, there are no daycares or trusted nannies. There aren't even enough schools equipped to handle them, let's forget about extracurriculars or sports to engage them in."

Parvathi and Madhumita had the same experiences while finding facilities for their toddlers. Madhumita believes school teachers are not that sensitive or lack training to handle such children. They are left alone, so it is better to do home-schooling. Also, Parvathi feels people lack compassion towards such children. They don't allow their children to play with these kids. Parvathi chooses to go on a holiday off-season so that his son is not judged, and goes to the park so that her son is not ill-treated.

For Kamini Sharma, things are a little better as she is currently located in the United Kingdom. Sharma quit her career as a software engineer eight years back. Sharma says, "my aspirations are completely diverted. Now I am waiting for my daughter to get into the school." Sharma experienced that Western countries are more open and better than India from a sensitivity perspective. Sharma's daughter was diagnosed in the foreign land itself. She confirmed that doctors properly explained what the diagnosis meant, whereas for Parvathi it was other way around. Indirectly she was told it may be the mother's fault. She researched her son's condition extensively and how to cope with it. 

Speaking to all mothers, one thing is clear, the care to support kids with disorders falls on mothers. They have to go the extra mile to pull it off every day. Mothers too prioritise their children's needs thinking of their development and how to make them independent in thinking of their future. But to process the entire thing and wake up daily requires family support and motivation. For a few women, their spouse is emotionally unavailable. Many claim negligence on the father's part. Men usually provide financial support and consider their job done. 

But for a mother like Parvathi who has to work to attain financial needs as well, she has to juggle more because it is not just limited to passion. The expensive therapies, classes, schooling, and hospital bills of the child depend on it. On average per therapy session cost Rs.500 to Rs.800, if 12 sessions are provided for one therapy each month, it goes to thousands. To manage such expenses for a middle-class family for years together is not a cakewalk. Parvathi and Madhumita believe that the government should bring a tab on expensive treatment. Madhumita says, "government needs to equip their primary healthcare centres, give them training on the issue and create a more sensitive approach. 

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