World Autism Awareness Day 2020: Why 'acceptance' must be prioritised over initiatives like 'light it up blue'
World over, autistic people have challenged the normative idea of “lighting it up blue” with its harmful connotations, and sought a shift from ‘awareness’ to ‘acceptance’, celebrating April as #AutismAcceptanceMonth.
What is ‘normal’? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.
As 2 April draws close, I find myself watching how the media covers autism. The date is observed as World Autism Day, with initiatives such as “Light It Up Blue” meant to raise awareness. Yet, world over, autistic people have challenged the normative idea of “lighting it up blue” with its harmful connotations, and sought a shift from ‘awareness’ to ‘acceptance’, celebrating April as #AutismAcceptanceMonth.
Autistics have reminded us repeatedly that they prefer identity-first language — i.e. they prefer to be called ‘Autistic people’ (identity first) over ‘person with autism’ (people first). This debate over how to address disabled people has been ongoing within the community and outside, with allies and governments, forever. However, non-disabled people all over the world shy away from using the word disabled, or autistic, deaf etc. They are far more comfortable with soft versions of the same word — focussing on the difference. Their behaviour, however, doesn’t reflect any acceptance of this difference.
Priyangee, a lawyer, defines autism as a spectrum. “Not everyone who is on the spectrum experiences autism in the same way. Therefore, do not assume that our ability to live life is limited in all ways. Do not use our diagnosis to make us feel small,” she says. This sentiment resonated with two other individuals I spoke with as well. For Rakshita, a teacher supporting students with special needs in an inclusive school in Hyderabad, accepting autism meant “giving up your way of thinking and being and willing to constantly unlearn and relearn”. A disaster risk professional, @TheBoyWhoGrewUpAsAnAspie was specifically advised not to talk about his diagnosis on Facebook and Instagram. “People don’t understand these things, is what I keep getting told,” he says.
Feeling the need for an outlet, @TheBoyWhoGrewUpAsAnAspie began writing a blog anonymously and found the process therapeutic. One of his concerns was that the moment someone says they are autistic, the non-disabled and neurotypical (those who are neither on the spectrum nor have any other developmental disability) think of it as disease. The focus is on “curing” the autistic person. “To be honest, this is the way I was born. I am just a different cup of tea, you know? Just because my brain is not wired like yours doesn’t mean I need to be ‘fixed’. There is a jumble of wires in my brain and I am learning to navigate these connections. It may be different from yours, but this doesn’t mean you isolate me,” he notes.
Priyangee also attests to how the diagnosis shifts people’s perceptions of you. She says, “One of the reasons I am glad I didn’t have an early diagnosis is, I know society would have limited the opportunities I could avail — not because I lack in ability, which I clearly don’t, but because they’d think I lack the ability to navigate through the neurotypical world.”
While receiving a diagnosis offers a certain happiness, a sense of finding home, it also results in a lot of discrimination and boxing. People associate the diagnosis with limitations more than with possibilities. For many of us in the disabled, autistic, illness community, being diagnosed means finding community, finding language.
“I was really happy when I got diagnosed,” says @TheBoyWhoGrewUpAsAnAspie. “I still smile thinking of that moment. I had a lot of anger issues back then and I was constantly thinking why am I suffering while others around me are enjoying [life]. The diagnosis helped me shift from seeing it as a problem to learning to manage it. Till my diagnosis, I didn’t know how to adopt [coping] strategies. Then, I learnt to manage it.”
The many myths attached to autistics include they “have no empathy”, “are uncontrollable”, “throw tantrums” etc. In this piece on being an ally to autistic people, therapist Prathama Raghavan quotes a young man as saying: “It’s not as if you (non-autistic folk) can empathise with the autistic experience, so maybe it is not a question of empathy?” A particular myth that came up in my conversations bears attending to: the use of terms like “high functioning” and “low functioning”. Amethyst explains this in her video, ‘Ask An Autistic — What about functioning labels?’ The label was created to rate how much an autistic person could do, and to assist in managing their tasks.
However, many autistic people have felt that even within the individual, a spectrum of functioning exists. “There is no such thing as ‘high functioning autism’,” says Priyangee. “If we seem high functioning in one area, it often comes at the cost of ‘functioning’ in other area. My high functioning at work comes at the cost of being messy at home. I cannot manage both, physically and mentally.”
One of the reasons it is believed to be so, Lydia XZ Brown says in a post on functioning labels, is because “most people equate ‘autistic’ with unintelligent, incapable of doing anything, relegated to special education, unable to complete post-secondary education, anti-social, incapable of choosing to have or not have sexual or romantic relationships, and eternally infantile. These ideas arise because of the ableism that is so pervasive in our society”.
This in many ways reinforces what I addressed in my previous column about being able to pass, or the arduous process of “faking well”. The idea of who is disabled is such a narrow line that I am not sure any of us can walk on it without falling right off.
How then do we behave around autistic people? Rakshita puts it simply: “Listen to autistics. Let them communicate however they want. Speech is not a superior way of communication. And autistic communication is not deficient. But most importantly, don’t try to change us. Change your perception, even if it is validated by a majority.” Or, as she writes in these verses —
Just as I welcome you
Take courage to let me in, too
Let’s intertwine, let’s dance,
Let’s flutter, let’s stutter,
Let’s hum to our different rhythms
Let’s find our own harmony
Let’s make being together our mission.
Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology, is involved in programme development with Rising Flame and is co-founder — The Curio-city Collective.
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