Autism is a neuro developmental disorder that affects social communication, increased repetitive behaviours and affects ones range of obsessions and interests.
Devangana Mishra, CEO and Founder, Brain Bristle & author of Desierto Florido
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Devangana, tell us a little more about you, what you do, who you are?
As you already stated, I’m Devangana Mishra. I’m a writer in my personal life but it’s all so easily blended with my professional work where I teach children on the spectrum of autism through direct intervention, now at BrainBristle, my own think tank- but for the last 15 years before this I worked by teaching kids on the spectrum at big schools, universities and larger organisations while building training and voice to inclusion.
I come from a large, loving family with the best parents and brother. A lot of my family is based out of the States, some India, but my parents and brother and sister in law live Delhi… I hope with my work to make my family and my loved ones proud.
Why autism? What is autism?
Autism is a neuro developmental disorder that affects social communication, increased repetitive behaviours and affects ones range of obsessions and interests. Why autism is a great question, because we spend all our funding on trying to satiate or solve needs and trying to make the impossible possible instead of just calm, exposed, multi cultural, unshaken, strong, still, resilient education and hope something erupts from autism along the way, somewhere. Less agression in the field, more sunshine and fun. I don’t know what’s the right approach but I rely on the latter and hope for the former to find a home.
What’s the reason for this absolutely rapid rise in autism numbers globally?
When a child has a differently wired brain, BUT a body, some speech, an ability to see, a family, a school- but none of those are working as expected or in tandem, we keep trying to fix it all- we’ll fix one piece and another one falls, we’ll fix another then a third falls, we just suffocate it all and make autism look so big by putting all needs as one, and various industries offering solutions to this hue and cry- trying to hold it all together as one area of need, AUTISM. There’s mass hysteria in this collectivist thinking of trying to support autism, we’re going into this space with a lobbying mindset instead of ‘alright, this kid has been diagnosed on the spectrum- I just need to think of ways to make some of it come very alive!’ - this journey is easier said than done- it requires creativity, an innate sense of gently activism and active intelligence and open mindedness, some humour, some emotional intelligence, the attitude and presence to take all crashes as crashes and climbs as possible crashes some day and knowing very few climbed the Mt Everest, there’s one Deepika Padukone, one Einstein, one Elon Musk, one Woody Allen, there’s one SRK but there’s many, many who try to get there and do get somehow, somewhere- that’s it, there’s today thousands of global artists, thinkers, creators who’re well settled on the spectrum without their autism really being a hindrance- but they feel too far off when were educating this kid so we don’t even try. We raise funds for ironing out the needs of autism without realising it might be our inability to incubate more than their needs that’s causing this outrageous rise in numbers.
Also, of course the usual answer is, we’re testing a lot more now than we ever did, we’re misdiagnosing or over diagnosing, we’re hypochondriacs, helicopter parenting and treating the spectrum a lot narrower than it’s meant to be seen as.
Where are we going wrong but also where are we going right in the field?
Where we’re going right is that when I was at Davos in 2020, for the World Economic Forum, as a grown up, I interacted with many excellently articulate, intelligent, slightly awkward but very interesting adults (I later found out they were on the spectrum). These glimmers of amazing adults are hope to remind us to keep incubating the kids we work with, as intelligently as possible for as long- to possibly get there when they’re ready to be there. Life’s long, give them the time and grace. Where we’re going wrong is we’ve given so much attention to these kids and their needs when they’re so little by putting them on billboard as autistic, billions of dollars are going into autism needs with more needs and some gains as results at best- because of how we’re intervening, how we’re exposing, how we’re educating, what’s the new gimmick to try now, what are capitalists convincing us to do next, what are we focusing on and what are we letting go of, with humour and grace. They’re growing up into adults on the spectrum with many, many needs consuming their day, sensory, situational, dietary, anxiety, depression, mental health, the list is endless and that’s become the narrative of autism at its best.
This shift of perspective sounds simple and easy but this is the exact difference of focus that’s messing up the field, our imagination is polluted with how do we make needs look presentable that we’re not focusing on what if we ignored this and found ways at the end of a meltdown or a head banging episode to go on, business as usual.
What are your hopes with your think tank BrainBristle and what has your focused work in this field informed you thus far?
Instead of making children on the spectrum look like cute or defective specimens, who need funds to be raised for their needs- and their fiddle and their toys and their special education and their food and their care and their vices and wows. I am and have been nothing but simply an intelligent, well educated, strong teacher for kids on the spectrum of autism- teaching them at the most sophisticated place in Mumbai, Soho House, to defiantly question struggles with inclusion, and for them to slowly embody environment- while educating them there in groups of 1 or 2 or a small group with all tools I have at hand- raising funds for myself and my needs, not letting their childhood get stolen by our incompetencies and our inability to be vulnerable and needy and wanting as adults.
I’ve worked at places that paid me a lot of money to simply teach students on the spectrum, I’ve taught kids on the spectrum since I was 21 and I continue to do this/ be this. My focused work tells me, don’t look up for one minute when you’re teaching kids on the spectrum, their entirety is acceptable. Simply listen, educate, love, care, scold, give time outs, walk out on them come back in - treat them like you’d treat your regular 5th grader or 9th grader- it’ll be very difficult but is essential and then when you’re a horribly exhausted, very broke, tattered teacher, use your passion and pain to raise funds for your survival, for yourself, not them, not theirs.
I don’t know if this is what the world of autism is doing, I don’t think so, but these are my core values and principles- to be clear in my messaging, asking people with big wallets for ways to collaborate with me as Devangana, not the kids I protect under BrainBristle.
Anything else you’d like to tell us about brainbristle or autism as a subject while we’re on it?
If you’d notice I run a makeshift design page for an Instagram handle for BrainBristle, my LinkedIn page is just for sharing relevant information- I mostly protect the identity of my kids, it doesn’t matter how difficult our days get or have been, giving them the freedom to claim their own life and their stories once they’re 18 and leave it open to their sharing what their stories have been, what helped them, what messed them up, what almost killed them and what saved them and all else. I wish we didn’t make autism into a global plea for ‘save him’ or ‘look Patrick now laughs with two teeth out now, and plays with his sister, so cute’ - but just something we focus on as science rather than as raising hell for philanthropy that needs funding.
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