Autistic Pride Day: Why Caregiving is the Vehicle for Survival, Wholesome Growth for Those on Spectrum – News18

“He understands he is autistic, but he doesn’t want that to be a reason why he can’t pursue love…”, says Gaya, a ‘buddy’ to people with autism.

Autism Spectrum Disorder (ASD) is a developmental disability caused by differences in the brain in which a person faces problems with social communication, has restricted or repetitive interest areas, motor skills, or varying degrees of cognitive impairment.

As is the case with most disabilities, caregiving assumes a key role in the survival, development and wholesome growth of those on the spectrum. Everything starts at home, so does the process of caregiving — from parents, doctors, and therapists to siblings, ‘buddies’, teachers that navigate the world alongside.

Pairing an autistic person with a peer ensures support through friendship, education, and a social agency that mediates between people on the spectrum and the various environments they interact with. The health and well-being of someone on the spectrum becomes central as the mainstream fails to accept.

The Buddy System

While some parents auto-pilot into caregiving mode, some are unable to emotionally contribute, and some avail systemic help such as extended family, siblings, assistive living, and even ‘buddies’.

“I don’t remember a single person from Angad’s school who is still friends with him,” Preeti Singh, mother of a 24-year-old man with autism, tells News18. “Having a buddy would mean Angad didn’t have to eat alone during break-time, maybe he would have been included in social activities too.”

Whereas Gaya, who was introduced to caregiving from the age of 5 through a school that had the intentions of inclusivity, says sensitisation is important but so is morality and social ethics. “As a secondary caregiver, it got really hard without any help from the parents or access to Shashank’s (name changed for confidentiality) therapists,” they added on the need for proactive and collaborative effort.

A world that discriminates and excludes, and a heart-breaking venture for anyone who is “different”. From a mentor to a buddy, the informal role remains essential to reduce the vulnerability of autistic persons to an outsider’s victimisation. It’s a tough world to crack exactly right, but the starting line is not the same for everyone.

“What teenagers go through is in itself eccentric and confusing, and then someone who is generally unable to understand what they experience, having to do deal with these urges and impulses that we have learnt to control and navigate through conditioning. But for somebody who just knows how to feel it and is overwhelmed by the feeling of it, it becomes harder,” adds Gaya.

“In the zero period, we used to do exercises for self-discovery,” Gaya tells News18 that puberty, for Shashank, brought along a significant lack of boundaries. “Which meant, it was hard for him to understand boundaries, including his own, and for us to get to a place where we understand that and try not to violate anyone else’s. Boundaries were important when Angad was growing up…,” Preeti, who recalls an emotionally difficult sunny afternoon where she taught her son how to “1, 2, and SIT”, says “life changed when I had a second child, a daughter”. Raveera, 20, has grown up as a caregiver.

“From ‘bhaiya, maybe this shirt will look better’, to ‘I plan two adjacent houses for me and him. Tomorrow if we both have a family of our own, we should have our privacy. But I will always be at an arm’s distance if he needs’,” Preeti’s daughter Raveera is always her brother’s advocate first.

Having learnt inclusivity naturally – a concept still tough for some – “she doesn’t befriend anyone who doesn’t accept Angad with open arms”, Preeti talks about how strong their bond is.

Raveera is the reason Angad found his musical rhythm, the fun behind painting colours, the acceptance that everyone else denied him. For a condition that may or may not have a brighter promise, acceptance and hope go a long way. And caregivers are just a medium.

“I guess I knew how to have fun and be a good person,” Gaya reveals how the department for disabled students thrived in the feeling of unity, celebration, and the idea of ‘dance and music’ is what kept them enrolled as a buddy. Dancing, music, colours – all joys are welcome in this unwelcome community. It is a game x patience and willpower, it is frustrating and fruitful.

“Time is an obsession,” Preeti who went on to make a career out of caregiving and now is a director of Diversity, Equity & Inclusion, says “structure and routine are important when you’re learning the world and setting personal boundaries”. On the ‘peculiarity of obsessions’, Gaya shares how the sensitisation training included share interests. “Your classmate is liking trains at this time, or they’re really like mats, talk to them about your opinions on those, ask them questions, engage them.”

What about higher education and employment?

A mother of 24 years, Preeti contributes her time towards employment of the differently-abled, and calls out the ‘trophy’ culture of corporations where “big corporations want to employ differently-abled persons but don’t want to make systemic accommodations for accessibility”. In her experience with a globally renowned company, she was asked for eligible candidates from the disabled category, suggestions were rejected only for the demand to “bring someone in a wheelchair, instead”.

“Only for CSR gains,” Preeti says big organisations are only looking to “tick the boxes” in the name of inclusivity. What about dedicated arenas for impulse management? What about the ‘buddy’ programme? “Why don’t you know the disabled queer person who sits right next to the reception of your office?” echoing the voice of accessibility, Preeti raises some important questions.

“Imagine a 24-year-old 6’4 tall young man. He comes home crying. Asks me, ‘Mumma, I know I have my setbacks, but I also know how to kick the ball right. Why won’t they let me play with them?’” What do I tell him? That the world must do better?

Autism affects around 18 million people in India. Autism is the third most common developmental disorder in the world. (Centres For Disease Control And Prevention)