Faces of the Neurodiverse: An Interview with Hari Srinivasan
Hari Srinivasan
University of California, Berkeley Student
As a student at Berkeley, Hari Srinivasan has worked hard to empower the neurodivergent community. Srinivasan, a senior staff journalist on the Daily Cal, utilizes opportunities to share his voice and advocates on behalf of neurodivergent individuals through his involvement in Spectrum: Autism at Cal. Srinivasan also serves as a researcher in the Berkeley disability lab and dedicates his time towards instructing Autism students.
What would you like everyone to know about being neurodiverse?
“At the end of the day, anyone who is regarded as “different” is living in a world that is not really accommodating of them or built for them. So it’s a constant state of trying to fit in which is very stressful and can lead to “burnout”. Therapy can result in“masking” or “camouflage” but does not mean these issues are not there.
There is also a lot of confusion around what ND is. When it was initially coined it referred primarily to Aspergers which is no longer a separate diagnosis but included in autism since DSM5. Now ND has come to include all kinds of dx — autism, ADHD, tourettes, dyslexia, dyslexia, dysgraphia, dyscalculia, intellectual disability, sensory processing disorder, auditory processing disorder, anxiety disorders etc.
You can kind of think of Neurodiversity as kind of the opposite of what you would call neurotypical or NT thinking. Neurodivergent folks are also called Neurominorities. (Oh BTW, any non-autistic is called allistic. Whew!!) So there are quite a few terms.
I think there is also confusion over the perception of whether Neurodiversity includes all of autism, and all of intellectual disability etc. Given its roots, there is still the illusion that ND applies only to the more functional autistics and many programs seem to treat it that way. But from a disability justice point of view, if you say autism is neurodiverse then it’s all of autism, you don’t pick and choose which autistics.”
Do you have preferences in terms of the language used?
“Lots of thoughts but zooming in on a couple of things.
High Functioning Autism vs Low Functioning Autism
I do want to point out the labels high functioning and low functioning are highly stigmatizing and lead to a lot of gatekeeping.The existence of the word “high” means the other group is “low” — are we saying that some lives have somehow higher worth and therefore the right to inclusion. Educators and therapists are unknowingly perpetuating this stigma by classifying children into categories early on, which basically decides what kind of classrooms you are in and whether you even are worthy of inclusion. Unconscious bias means that term “low” will translate to low expectations around those kids. It’s hard to dig yourself out of the hole if due to low expectations, you are never given education beyond basic babysitting. Many programs for autistics will routinely screen out those that are not HFA, so it ends up very discriminatory.
Ironically everyone across the spectrum has challenges in different areas like monotropic mindset, executive functional, reading others emotions etc, and have different skill sets, else we would not have a dx label at all.
From a disability justice point of view, we need to move away from using terms like “high” and “low.” The move now is more towards reframing in terms of “support needs”. Everyone has needs and supports in various areas so it’s better to say this person has “support needs in X areas.””
Identify first language (autistic/disabled/deaf) vs People first language (person with autism, person with disability).
“I hear that many in the autistic community favor identity-first language and I can see why. Autism falls into NDD (neurodevelopmental disorder), so you can’t really separate a person from their autism. It affects the very act you act and behave, it defines you but does not make you less of a person.
Traditionally the disability community had liked to use person-first language which was useful as a social construct those days in terms of inclusion and deinstitutionalization etc. So you said, “person with disability,” or “people with disabilities,” placing emphasis on the personhood before their disability.
But now more and more people are reclaiming identity-first language. Terms like crip and deaf and autistic have gained momentum. There is even Krip-Hop now!!
I’ve also heard that the term “Autistic” has replaced the “R-word” on school playgrounds, which is troubling. So proudly reclaiming the term has another benefit — we can de-pathologize it and change the negative narrative around it.
On a practical level, “autistic” means I have to type 2 less words compared to “person with autism” so I kind of like that.”
What stigmas do you encounter in your community?
“Oof. Where do I even start? We face stigma on many fronts, but since we are all of South Asian origin here, I’ll like to zoom in on stigma from our community.
I think we live in a society that is not equipped for us and simply does not have the time or thought to even try. Hopefully that is changing.
I think growing up, a majority of my own South-Asian community is the one I have been most disappointed with as they are exclusionary of disability. I think there is this stigma in all Asian populations. I grew up in Cupertino in the Bay Area, which is a “high-scoring-competitive” district dominated by Indians and Chinese families. In the early years, they don’t want their kids to play with you, (which actually would have been a bigger help for me); maybe autism is “catching”. It’s almost like there is so much focus by families on getting their kids into an ivy league school that there is no room there for special needs kids unless they can serve as volunteer material for that college essay during their high school years. A high school volunteer has outright told me this!!
I think my early experiences have made me cynical. Fact: the only time I would see the typical kids on my street, including the ones next door, was at Halloween time at my doorstep with arms stretched out for candy. So even then they wanted something from me.
What we need extends beyond being the recipient of volunteering where someone plays board games with you on a predetermined frequency. There was nothing I wanted more to just simply “hang-out” at the mall doing seemingly nothing, the way I would see typical teens doing. It did not have to be a productive activity time, maybe just doing silly things or even nothing. We need to not just be included, we need to feel we belong. We also want the ones to be doing volunteering too in whatever way we can.
Should I go on? The other is this pity fest around disability. Oh poor you, I don’t know how you do it, you’re so brave. I find expressions of pity to be very self-serving. The target of the pity (moi) would rather have support than a truckful of pity which is very demoralizing. The actor on the other hand walks away feeling very motivated and inspired with the unspoken and almost palpable — “Thank god it’s not me or my kid. I’m so fortunate”
And also the way a special needs group is introduced at mainstream Indian events (like the park/temple festivals) is so full of pity and condescension as though a great favor is being bestowed upon us, with the unspoken “These poor unfortunate kids!!”
In sharp contrast were the Riley family, Cindy Riley saw toddler me at the park and asked my mom if she would like her kids over to play. And those 3 kids came to my home for over a decade for playdates and I have been part of the events in their lives. Much of what I have learned about interacting with typical kids has been through them. We need more families like the Rileys rather than neighbors in Sunnyvale who sued and forced the Gopal family to move, as having an autistic kid on the street brought the property values down. It’s so much easier to earn karma points by doing a sterile breakfast seva at the homeless shelter than to do seva by letting your kids play with an autistic child that lives on your street and be involved in their lives.
I do want to clarify that there are some genuine and simply amazing exceptions to my seeming generalizations of the Indian/Asian community. People who have absolutely given me that extra leg up to me and many other kids- to name a few — Viji Dilip of Access Braille and Madhu Krishan of Inclusive World and others. But they are definitely in the minority.
I think once these same small kids enter college, their worldviews (hopefully) change, due to the diversity of students they are exposed to.
I can only hope that my current generation who will go on to have their own families will view autism in a different light and work to include and make autistics (in their neighborhood at least) feel like they belong.”
Do you think neurotypical individuals can aid in the advocacy for neurodiversity without infringing on neurodiverse voices and, if so, how?
“Absolutely. Change cannot happen unless there is collaboration-cooperation not just cross-disability but also with our non-disabled allies. We need allies. It will take a team effort of both autistics and their non-autistic allies to propel any large-scale transformation in societal attitudes, research and policy. There are so many needs from healthcare to services and supports.
An example of this collaboration-cooperation is in the autism class I run at UC Berkeley. This will be my fourth semester teaching this very popular class. My ADHD, oral-motor apraxia and other autism-related challenges mean I cannot do many of the things my typical peers can, even if I have the knowledge base. But together with my typical fellow-instructors we are able to deliver a class that is engaging, informative and has a real social impact. So I have to really thank the different student peers who have worked with me to help deliver this course. So the output is a team effort by autistic and non-autistic students. Everyone brings something to the table. I’m very happy it’s this way because it really demonstrates collaboration-cooperation to the students in the class, which is what we need in the rest of society too.”
What are your aspirations for the future?
“Oh I want to do so many things. Write books for sure, go to grad school, do research, become a productive and contributing member of society, make a difference. For autistics like me the road ahead is uncharted so I will have to innovate as I go along. (A decade ago, it was not even thought I would go to college!!).
I think of myself as “possibility,” Hari as Possibility. But above all be guided by a principle of love all, serve all in all that I get to do.”
Do you have anything else you would like people to know?
“Back to stigma. When it comes to education, it still amazes me that educators and therapists, the very people who are supposed to educate and nurture you, are often the ones who will act as the biggest gatekeepers when it comes to special education. Why should education be so difficult to access, the same education that is taken for granted by my non-disabled peers. It’s just such sheer low expectations and you are kind of just pushed through the system till you exit at age 22. I had to leave the school district and join a public charter school to gain access to mainstream education in late middle school. It should not have to be that way. Not when there are wonderful laws like IDEA which mandate equity in access to education.
College seems like a different world, where educators encourage you to avail of all the opportunities and the Disabled students program works with you on accommodations and supports so that you can be successful. I am absolutely having the time of my life here. Perhaps its college-age mindset of being open to diverse experiences and thinking, but college students too seem to be more open-minded and inclusive.”
References:
Interview with Hari Srinivasan
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Originally published at https://contactprojectillu.wixsite.com on October 24, 2020.
