My sibling, Gamati, has only recently started exploring their autistic identity. Like many others, they want to turn to our parents for guidance but stigma has deeply affected our family’s perception of autism.
My family and the South Asian community in general treats autism as taboo, a topic to be avoided, much like other disabilities. As a result, if someone is autistic, they are either excluded from the community or their identity as an autistic person itself is denied to them by the community.
“I feel like a lot of South Asians, as medical professionals, portray autism as a bad thing when it really is not,” Gamati said. “They see it as an illness; they see autistic people as [not] “functioning," [which] is an offensive term.”
This ignorance has created incredible harm that folks are slowly starting to recognize. Simultaneously, people are considering what autism looks like in the South Asian communities, and the ways it might differ from predominant cultures. Despite this important progress, these conversations still do not include autistic people themselves, let alone autistic folks from more marginalized identities.
Today, we see quite a few neurotypical people that have peddled this idea that autistic people cannot handle their identities. Instead, they self-appoint themselves as the spokespeople for the autistic community.
Katherine May, an author and award-winning blogger explores this ignorance in Judith Newman's memoir called To Siri with Love:
“Her [Judith Newman’s] memoir of mothering an autistic son, To Siri with Love (2017), triggered waves of outrage from the autistic community, on account of a multitude of condescending and ill-informed remarks……And yet the cover of To Siri with Love brims with praise for the author’s emotional intelligence, calling it ‘moving’, ‘touching’, ‘warm’ and ‘wise’, telling us that it ‘will make your heart brim, and then break it’. These are the words of a neurotypical society talking to itself, and praising its own ability to love the strange creature portrayed in this book. Here, we glimpse the space where discussions about autistic people take place: a closed shop, in which we are subjected to intrusive and patronizing comment, while being explicitly excluded from the discourse ourselves.
Centering only privileged identities in both the U.S. and South Asia has already had long lasting impacts on the autistic community. There is a clear power dynamic when neurotypical people are made to be the spokespeople for people with autism. According to Gamati, neurotypical people’s lack of lived experiences reinforces reductive, binary definitions of autism while excluding actual autistic folks.
Intersections of caste and autism
There's another layer of misunderstanding when you add factors like race, gender, sexuality, and caste into conversations about neurodivergence.
Much of the early, credited research on autism was done by white, neurotypical, cisgender men. These researchers defined autism based on how it presents itself in other white men. Subsequently it is estimated that there are about four boys with autism for every girl. This unbalanced ratio is not because there are less autistic women than men, but because a much larger rate of women are diagnosed at later ages or never diagnosed at all. The number of folks who go undiagnosed increases based on race and we do not yet know how queerness or transness might affect folks’ treatment. Because of this lack of inclusive research, the complexities of autism have been ignored, and many autistic people have been denied diagnosis.
In South Asian community, whether in South Asia or the diaspora, our identity is never independent of caste. In fact, the way our society treats marginalized communities, especially the neurodivergent community, is intertwined with Brahminical enforced ideals of purity and worthiness. Those same ideals can exist in neurodivergent spaces as well.
“It may seem difficult to explain or understand but active denial of oppressive systems can be perpetuated by neurodivergent people,” said Rachelle Bharathi Chandran, a writer who has done work organizing for other autistic and neurodivergent folks in India. “That's precisely why caste is a superstructure — it permeates in every aspect of a society and its individuals.”
There is limited research about Dalit Bahujan Adivasi (DBA) people and neurodivergence, but looking at how medical access is often denied DBA communities, we can safely assume that caste identity plays a role in access to resources like diagnosis.
Growing up in the diaspora, my father told us at an early age that our people were fishermen, but he never told us what that meant. At the same time, we knew that we were not like the other Indian families around us, many of whom were often outwardly rude to our family. My parents saw caste and other parts of our identity as something to hide from us. They made a lot of decisions in hopes to protect us from our identities, but instead they left us more lost.
“I see my parents’ perception of caste and their perception of my autism as very similar,” Gamati said. “They didn't want me to know the specifics of our caste … because they didn’t want me to be ‘discouraged’ or exposed to discrimination.”
Gamati told me that growing up, our dad noticed traits in them that a lot of autistic people have but both parents did not want them to get a clinical diagnosis.
“ I am not going to say they wanted me to mask myself because they would not want me to feel unsafe, they just want me to fit in socially and be the supposed ‘normal,’” Gamati said. “They do not want me to think of my autism because they don’t want me to, again, be “discouraged” or feel the world is against me. But I am already discouraged from them shutting down that part of me.”
Caste also creates financial and medical barriers to diagnosis and help both in South Asia and the diaspora.
“It's not specific to autism but any neurodevelopmental disorder or mood disorders is largely not diagnosed [in DBA communities found in India] partly due to access to traditional medicine and mental health is often not considered as important as physical manifestation of illness,” Chandran said. “Although, due to the amount of trauma marginalized caste people are subjected to, they are one of the people who need such care the most. Add to this, therapists from the community who can understand and have lived experiences of caste trauma are few.”
Since these new resources for autistic people are created with savarna folks in mind, DBA folks still don’t have many spaces or help to safely explore their identity. With the lack of medical resources, DBA autistic folks turn to untraditional avenues, like self-diagnosing, but are often met with gatekeeping. Gamati has turned to self-diagnosing because of the lack of family support, but that path has presented its own difficulties for them.
“I had a lot of imposter syndrome when I was learning about self-diagnosing because I had this internalized ableism — I was thinking to myself that people are not actually going to believe me when I am self-diagnosed, that they are going to say I'm doing this for "attention" because it’s a "trend" and I am trying to feel "oppressed." I just have that fear … that I still have now.
Hopes for a just future
It is important to work towards a future where autistic people can live freely. But such a future is a distant reality.
"I cannot imagine such a future,” Chandran said. “The awareness of autism has just entered society, at least in India … the change that has to happen in educational institutions and workplaces is a huge shift because there is hardly any accommodation or consideration even in psychology departments or departments where studies of autism take place. But, it's a slow process and it will take time to educate and help people understand because for many people who have had late diagnosis as an adult, we are also often learning how to navigate being autistic.”
Chandran took it upon zirself to create zir own space called Stym for autistic folk to find community.
“The group's policy makes it clear it is an anti-caste space in addition to having zero tolerance against sexism, misogyny, islamophobia, ableism, homophobia and transphobia,” ze said.
Like Chandran, other autistic folk are creating spaces where autistic people can come together to heal and process away from neurotypical people. At the same time, we need to commit to dismantling all systems of oppression to ensure all autistic folks, including DBA folks, have access to the resources they need.
Chandran stresses, “We have to realize that being anti-caste is essential for everyone regardless of their learning disabilities. It [learning disabilities] cannot be used as an excuse.”