My life, my way!

 Autonomy; it is an eight letter word that sums up the end goal that most parents envision for their children. It is also something that is organically and gradually achieved as a child grows into a teen , and eventually into an adult. Or, does it?!!!

Welcome to autism land where the term ‘autonomy’ takes on a completely different meaning, or is conspicuous by its absence. If you find yourself wondering about the hard hitting statement that I just made, then it’s time to take a step back to understand what the life path of many autistics, especially those with higher support needs looks like.

As with all other autistics, those with high support needs  too have an atypical sensory profile, except, out here the level of difference is so intense that it impacts the attainment of gross and fine motor skills, besides a delay or complete absence of speech. What this also entails for parents and primary caregivers is that they have to actively work with us to help us achieve these milestones. Oftentimes, the primary caregiver’s career becomes a corollary damage in the process. Cut to schooling, or rather the lack of it, and the onus to build academic skills also lands on the overcrowded plate of the primary caregiver. The umbilical cord is never cut! 

The child grows into a teen and eventually an adult; but an adult for whom choices and decisions are made by parents, caregivers and all the other stakeholders except the adults themselves! The fact that many do not possess a reliable mode to communicate does not help either. But, does this mean that the adult in question does not posses the desire or the ability to make their own choices or decisions? Definitely not! What happens is that nobody bothers to ask, or even acknowledge that the said person could have their own perspective, and the fine line between concern and infringing autonomy is crossed. And, this is a problem. Here’s why; One of the biggest questions that plagues parents and caregivers is, ‘what after us?’. It is a very valid concern, given the fact that , for many of us, independence does not come organically with age . If a conscious attempt is not made to let us take our own decisions, we may never learn the ways of the world that we will continue to inhabit after our primary caregivers are gone. The Scandinavians have a term for this. They call it as doing a ‘Bear Favour’- a term that makes a lot of sense, for it’s barely a favour to the neurodivergent in question!

A related theme that pops up in my mind is that of informed consent, especially in the context of content that is put on social media and other public platforms. It is a well established fact that advocacy is key to heralding positive change. When we adult autistics, who possess a voice, talk about our lived experience, we consciously choose to share a part of ourselves with the larger society, to raise awareness and promote acceptance. We have complete control over the narrative that we put out and we make informed choices about the modes to deliver our message.In short, we know what we are doing! But what about photos and videos of minors and others who are incapable of giving an informed consent ? Oftentimes, it is the primary caregiver who puts these content out and sadly, some of them capture moments that are vulnerable and steer the narrative to a path of pity. Aren’t these situations where the fine line between advocacy and fame is crossed? 

Rumi, the Sufi poet and mystic, once said, ‘It’s your road and yours alone. Others may walk with you, but no one can walk it for you’. This is a profound thought, very relevant to autonomy in autism land and one that I hope you, my dear reader, ruminate over.