Autism and role of extended family/ neighbourhood

    Shweta Kumari         April 10, 2022

For parents revelation that their child is on Autism Spectrum is hard and it is just a beginning of an arduous journey. The journey is difficult at each stage, starting with acceptance at a personal level, navigating the process of diagnosis and establishing a treatment path, navigating through a network of therapists/ centres, managing learning plans, schedules, travels, and expenses.  An even more difficult aspect, which becomes invisible anxiety, is dealing with social networks and associated pressures.

I would like to express some thoughts on how ignorance and lack of adequate empathy from larger family/ society make the journey of parents of a special child a difficult one.

Indian family structure is going through a transition. At one end of the spectrum is, super urbanized- busy, double-income families where child bearing and upbringing are dependent on a network of a myriad of services from fertility assistance, nursing, daycare, household support, security and gated societies with limited natural social connect. The next strata is equally busy with limited means, with various degrees of family support and social connect. Here also, the role of formal child care services is of paramount importance, and affordability of same is critical. Then comes the most admired form of family and social structures of semi-urban and rural areas, where child care is supported through informal connects, as shared responsibilities and ample time is available with the primary caregivers.

 “ It takes a village to raise a child”. We all are familiar with this proverb which is believed to have originated in African Culture. It’s true! And, if it was not the case for one/ many, I am confident in assuming that some dimensions of growth must have been a challenge in the growing period or even today for those individuals. We can not feel complete without those connects.

Now imagine the journey of a child, born with some different mental wiring which impairs his cognition of surroundings, language skills, and social connections. He is a prisoner of his own world of limited cognition, expression, and connect. Aloof and lost in his own uncontrolled/ unmanaged emotions, responding to unprocessed sensory bombardments, all as a child, mostly all alone, mostly, surrounded by people fighting their own sensory, social and egoistic needs in their outer and inner worlds. Imagine the morning rush hours of a family, like when the whole building is rushing to their respective workplaces, Imagine evening hours where the living room is filled with people lost in catching up on social life on the phone, social media, TV, and other connects. In between these time slots the child was either with a caregiver - a duty bound, maybe already burdened supervisor with limited intelligence and emotional bond or was in some institution. A lot is lost for them and to them. Family, society, and society at large - including child care services need to be a very different place for them to actually integrate them with something larger called life. 

Autism is still a new term. With no definite pathology and treatment path, it is hard to explain the journey ahead to anyone who comes across this term for the first time. While for parents it’s a battle they would fight till the end, the extended family typically starts with denial, ignoring and then eventually, accept it as the fate of the child and family. A child which has delayed language skills, avoids eye connect, has sensory integration issues, gives unexpected responses, Naturally, deters/ avoids social engagement. It is tiring to engage them, generally less rewarding for the other person. I have seen, that a child who responds less, starts getting lesser social stimulation and eventually, end up getting disengaged by other. It feels natural to family and social members to disengage with problems if it doesn’t hurt them directly.

An autistic child needs at par or even more social exposure, social connect, and acknowledgment from all his/her connects. He needs experiences as any other child, but he can not create those meaningful experiences like a Neuro-Typical child. He needs diverse interactions, and exposure in society, at home, in society, at schools, or in public places; while he can not attract attention, or engage others effectively like a natural connector. A society that can not take out time to understand the unique traits of autism, the requirements, and the challenges of these special children will not be in a position to support them. It gives me heartbreak every time a parent is sharing instances of apathy and anti-path towards a special child that has hurt them and the child. Unfortunately, this is a reality at large, across strata.

To a great extent, throughout life, our sense of identity and survival is based on the role and position we hold in our larger family and society. We are born social beings. Living with a child with impaired learning and social skills; living this new reality every second, the parent of a special child faces a lot of adjustment issues while establishing this new equation with a larger family and society, which is lacking knowledge and thus, adequate empathy, fails to understand the challenge and provide practical support.

As I described in the previous paragraph, a parents’ journey will vary based on what kind of lifestyle-social structure the parent-child belongs to. For urbanized societies, finding meaningful, genuine, and adequate social connects is their biggest challenge. For families battling economic survival and on the path of climbing socio-economic ladders, responding to the needs of special children brings huge pressure in terms of making financial and career adjustments. For people living in traditional set-ups, creating awareness, and establishing the right therapy approach could be potential challenges but then, each case can be unique.

What is the way out of this situation? Who will respond to this? As parents, we can assume this role of creating awareness, sensitizing people, mustering the courage to keep dreaming, and keep fighting any limitation stalling the growth of special Children. To bring due awareness and empathy, we need to keep providing relatable anecdotes, and research evidence and be vocal about our needs as a parent community.

About Author

Shweta Kumari

Shweta is an Autism Activist. She is passionately working towards creating sensitivity in society for people on the autism spectrum.