From the satirical Institute for the Study of the Neurologically Typical:
Autism is a natural neurological variance, not a disorder. So when those who follow the medical model refer to Autism as a disorder they are spreading scientific errors, cultural value judgments that teach Autists that there is something wrong with them, which is why so many of us hate ourselves.
Neurotypicals are "different"—from us—but we don't try to make them behave Autistically.
Written by one of students in my 1:54 Autism Decal class as her final reflection assignment for the class.
"It's based both on the sources and a little bit on my own family. You can share it on your blog! Thank you for teaching this wonderful class" Myr-An Le
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THIS IS ABOUT MY MOTHER
Sometimes, I wonder what I must look like to my mom. I've outgrown the cradle of her arms, but am I still small in her hands?
By the time you are given breath to exist, I want to have learned the secret to being brave. - Excerpt from To The Child I May Never Have
My mom is 50 years old. Hair dyed dark with box dye for the last two decades. Eyes sharp and discerning, but I never know what she’s looking at. When she stands, she looks like she was stitched to stand right where she is. You don’t wonder why she is there, in your doorway with a plate of plum slices or in the grocery store eyeing unit prices or on the tarmac loading the airplane.
She has been a lot of things: daughter, eldest of seven, Catholic, 1.5 generation Vietnamese American, atheist, 1st generation college graduate, CFO of a hair salon, wife, substitute teacher, airline worker, accountant, family matriarch, mom.
Growing up, she used to tell me, “I always thought nurture beat nature until I had kids. Now, I forgive your father because I love you.”
Lately, I find myself asking, “Why?”
Why did you do this, why do you think this, why are you like this. I want to be able to unravel my mom’s hidden past and piece it back together.
There is very little discussion on autistic parents. Autism is something described most frequently in young children and rarely in adults. How could an autistic person grow to be an adult, let alone have children? And yet, autism is also understood to be hereditary.
Being an autistic parent has its own unique challenges.
In “Motherhood: Autistic Parenting,” Cynthia Kim writes that “Being a mom is an inherently social activity.” She describes a problem many autistic mothers have while raising their children. How do you teach a child to socialize when you struggle with it yourself?
Motherhood involves setting up playdates, chatting with other parents as your children play, and playing with your children too. And, unlike most social interactions, it’s a full-time job.
Growing up, my mom carefully taught me rules. This is how you talk to people about their family. This is how you talk about achievements. This is how you walk and this is how you smile. When people say this, you can ask that, and when you get a gift, you do this.
She has rules for everything in life. Not for me and my sister, but for everyone. From my mom’s point of view, there is a way things should be and a way things shouldn’t be, and she does not enjoy accepting the disparity between the ideal and our reality even if she understands the wisdom of this acceptance.
As many rules as there are in my mom, there is also a great capacity for change. “I had to force myself to hug you when you were growing up,” my mom tells me one evening.
This sentence does not register as cruel to me, although it does stay with me for the rest of my life. I see it for its truth: evidence of a love in spite of. And I am grateful for a mom incapable of change somehow, against all odds, changing.
This is for you, my mom says. But really, she must mean she thinks of me. - Excerpt from Watercolor Plum
In my experience, autism does not exist in Vietnamese communities. Early traits of autism like sorting toys and being quiet are signs of a good child who might be mathematically inclined, the family’s next engineer. When those traits develop into selective mutism or antisocial behavior, they aren’t recognized as a group of interconnected behaviors stemming from a neurodivergency. They are seen as individual characteristics, some problematic and others valuable.
20 percent of all students in classrooms are served under the Individuals with Disabilities Education Act (IDEA). When these numbers are broken down by ethnicity, 7 percent of all Asian students are served by this act. Autism is already extremely underdiagnosed in general. This issue is further exacerbated in some Asian communities where learning disabilities are personality traits.
There are foils. My sister is mute until kindergarten. My mother, knowingly, sees herself in my sister, and she does what she thinks would have helped her. She sometimes says, jokingly, “Your sister is a little on the spectrum,” but she does not take on the label for herself until I am 19 and she is 49. She never worries about my sister because she knows that problems come and go for “people like us.”
I have an aunt on my dad’s side. Like my mom, she’s an eldest daughter who immigrated to America with her parents at a young age because of the Vietnam War.
Nobody talks about my aunt who never learned how to hold a conversation, patiently completes jigsaw puzzle after jigsaw puzzle, and excitedly tries to convince anyone nearby to watch YouTube videos of people caring for dolls.
Here is something almost any Vietnamese American person can confirm: the older Vietnamese generations do not talk about trauma. I did not learn my father was a boat refugee until I was in college. Until I asked, I was not told that my mother’s dad likely has a passport for a nation that no longer exists. Until I asked, I was not told that my father’s mom came here first, alone without her husband or a word of English and with three kids in tow, the eldest of which is likely intellectually disabled.
I often wonder what parts of my mom have gone unspoken. Nobody talks about the ways they fail. But I’m here now, and I feel like I am failing.
I want to ask her, “Was it hard for you like this? Is it in my nature to be this way and I will find my way out? Or did I grow up too different from you to be as happy as you are now?”
World blue, Mother Earth, treat me well, please. Please, hold my hand and tell me I will be okay, and life is not so bad - Excerpt from Father Sky
In the same way my sister breaks a Rubik’s cube, I am taking my mom apart and piecing her back together in the hopes that I can discover what we are composed of today. There is nothing so interesting as discovering that what appears to be a collection of moving parts is, at its core, one thing alone.
SOURCES
“Motherhood: Autistic Parenting” by Cynthia Kim: https://awnnetwork.org/motherhood-autistic-parenting/
“The unexpected plus of parenting with autism” by Sarah Deweerdt: https://www.spectrumnews.org/features/deep-dive/unexpected-plus-parenting-autism/
“In Asian communities, raising a child with autism can be a lonely, difficult road” by Melody Cao: https://centerforhealthjournalism.org/2015/07/16/asian-communities-raising-child-autism-can-be -lonely-difficult-road
“Why Asian American kids are under-diagnosed when it comes to learning disabilities” by Victoria Namkung:
“Why Can’t We Talk About Autism in the Asian-American Community?” by Sunny Jang: https://www.autismparentingmagazine.com/autism-asian-american-community/
The speech I gave at the Spectrum At Cal event today
Hi everyone. My name is Hari Srinivasan.
Welcome to our in person 5 K run. We are so happy to be back, after the two years of uncertainty, that the pandemic had forced on us. I’m a senior here at Berkeley. I also teach a class on autism here at Berkeley.
I've been part of this amazing Spectrum At Cal for most of my time here and had the privilege of being president of this wonderful student organization, last year. Spectrum at Cal provided a community for me during my time here at Berkeley. Spectrum at Cal not only does autism outreach, both within and outside the campus, but also all manner of volunteering activities, and fundraising, which go right back to community organizations, that support individuals on the spectrum. Our organization has grown so much even during the time I've been a Berkeley. If you are a local organization interested in partnering with us, please do reach out to us. Let's make change happen.
I'm super thrilled to have spent my undergraduate years at Berkeley, which is really the birthplace of the disability rights movement. We boast of the first ever disabled students program, with other universities in the country and across the world, learning from us. It did start off for physical disabilities, but grew to include all manner of disabilities.
Today, Autism, is one of the fastest growing neurodevelopmental disabilities. Autism in all its forms, has a voice and we want to make it heard. Did you know my friend David, and I are the first, and only two non speaking autistic students to be admitted to Berkeley. It goes to show that autism too, is a diversity category, with the wide range of neurodiverse minds, that come with it. Autism is not a one size fits all disability, so we need to be flexible, and open minded to accommodate everyone, even the most marginalized amongst us.
What you're hearing, is my text to speech voice, as I am a minimally speaking autistic. I need to use alternative technology for most conversations, as I can only speak a few basic words. Technology is not perfect, and not always intuitive to use, but it helps me get by. It is unfortunate that, society has somehow conflated cognition with the ability to be able to use your mouth muscles to talk. Which is just an ill logical idea, and rather ridiculous really.
As a result, we nonspeaking autistics are generally not thought to be, worthy of education, let alone college. We face tremendous gatekeeping of opportunities in all manner of areas, all our lives. Everyone deserves the same opportunity of education, inclusion, and belonging.
Every life has worth. I repeat, every life deserves worth.
I've personally very proud of the t-shirt, that Spectrum designed last year, which I am wearing. We all belong. We all belong. You belong and I belong. And belonging is an idea, I'm very passionate about.
There is a big difference in the idea of awareness, acceptance, inclusion and belonging. Awareness is passive, which leads to some sort of acceptance, or what I like to think of as, tolerance of our presence. Inclusion for most part means, being allowed to exist in the same space as our non disabled peers. It's like sitting in the same classroom, as your non disabled peers, but both of you are on parallel tracks that never intersect.
But Belonging is really the key, where you feel you are a part of a community.When your life is seen as having worth. Where you belong, and I too belong.
Only with more exposure to all manner of autistics, will there be a change in mindsets, and greater belonging. It can be a win-win for all.
The diversity of autism, is like a cocoon, that morphs into all sorts of unexpected colorful butterflies. If you notice our logo is a butterfly. The butterfly effect, says a small local change, can lead to profound, and complex changes around the world. The two butterflies intertwine, and spread out their wings. That is what you are all doing here today by participating. You are all part of the butterfly effect, that will change the way autism is perceived, understood, and accepted. And how we can all belong. If there is just one thing you got out of what I said today, go home with the idea of promoting belonging.
Welcome again to Spectrum at Cal's, 5K run.
A big shout out to my fellow spectrum members and to all the amazing volunteers, who have helped put this wonderful event together.
