Unmasking Autism Diary #14: Wait, was my grandma Autistic?
Read now (4 mins) | Heritage: from inside Angela's Autistic mind
July 31, 2023
Dear Diary,
I came out of the womb wrong.
I wasn’t a happy baby.
I consistently woke up on the wrong side of the bed.
My life consisted of two halves. The half where I was being told I was behaving badly:
“Comb your hair.” “Stop singing.” “Eat your food.” “Don’t be so loud.”
And the half where the people around me were being warned about my bad behavior: “Don’t talk to her when she first wakes up.” “She’s just moody.” “Ignore her. She always has her head in a book.”
The message I got loud and clear was that something was fundamentally wrong with me.
Except when I was with my grandmother. My grandmother didn’t force me to eat food I didn’t like. She didn’t tell me to be cheerful. She didn’t complain about how I walked. She seemed content to accept me how I was. Being around her was emotionally regulating though, at the time, I didn’t know that term or that that was why I liked her so much.
My grandmother’s house (when my grandfather was away) was the one place I felt fully accepted. The one place I wasn’t broken.
My other safe place was the Wallingford Public Library. The rules were so clear: quietly read books. I was on it! If you wanted to talk, there was the reference librarian desk where you could ask about books. All the mysteries were inside the pages, not in the human interactions.
At school, students were told their participation in class was required, so I fully engaged, asking lots of questions, and raising my hand to give all the answers. But that was wrong. I was consistently told NOT to participate so much, even though the whole class was being told to engage more and I was a part of the class, right? The rules made no sense to me.
These are manifestations of some of the social communication “deficits” referred to in pathologized explanations of Autism.
We have these ideas for how kids should act which come from neuromajority playbooks. We try to train kids to fit the behaviors in those playbooks. The more you hit those marks—naturally or with effort—the more societal favor you receive.
We want to teach kids right from wrong and we use a system of rewards and punishments to do it. I have no idea how effective that approach is for neurotypical kids but I know it didn’t work for me, and evidence shows, trying to get an Autistic kid to act like an Allistic doesn’t work in general.
I was happiest when I wasn’t being corrected or mocked—like with my grandma. My guard dropped and I smiled more when I wasn’t being told, “Stop pouting.” I sang less when I wasn’t being told, “Stop singing.” I showered more when I wasn’t being told, “You smell.” I ate healthier when my caregiver knew all my favorites and happily fed me those.
Being my safe space was easy for my grandmother. My singing incessantly was a self-soothing stim. It didn’t seem to bother her when I did it, but I don’t remember singing that much at her house. Why would I sing when I could run my fingers over all her cut glass bowls as she explained depression glass, buttons and bows, carnival glass and this whole world of beauty?
My grandmother and I would tap on glass bowls for hours assessing the quality of the glass with our eyes, fingers, and ears. Her best pieces sounded like a bright bell. The cheap stuff sounded dead when you tapped it. We would line up her glass pieces in order of maker, or pattern, or type, or pitch, happily cleaning each one meticulously as we went.
She was info dumping on her special interest and I was loving every minute. I’m pretty sure what was happening was that I was co-regulating with a fellow undiagnosed Autistic woman and from her I was learning the happiness that comes from deep knowledge of our special interests.
There was no chaos or mismatched expectations in the world of my grandmother’s cut glass collection.
Her special interests expanded beyond antique cut glass to needlepoint, and gardening. She collected jewelry, liked playing cards, and had a selection of fifteen things that she cooked to perfection.
She didn’t have any friends. Really—none. And people didn’t like her. She was one of seven kids, but several had died and she only talked to a couple of her surviving siblings—even that was rare.
I looked through the diagnostic criteria thinking about her life and I think she was one of us…But it’s so hard to remember. Alzheimer’s stole her from me when I was 15.
Anyway, it seems likely.
I’m fairly obsessed with Double Empathy problem research by Damian Milton. Double empathy is the tendency for Autistic people to struggle to understand members of the neuromajority just as much as members of the neuromajority find it difficult to understand us.
Think of it like this. I was told class participation was required in school, so, logically, I participated to the maximum. Members of the neuromajority have these secret rules about just how much class participation is the right amount.
It’s never communicated but it’s supposed to be obvious. But, it’s never obvious to Autistics. So we seem obnoxious and annoying to the neuromajority and non-Autistics seem like liars and inconsistent assholes to us.
“If you wanted a certain amount or a certain type of class participation, why didn’t you say that?”
See it’s a two-sided problem of not understanding each other. A.K.A. a “double empathy” problem.
Generally two Autistics or two Allistics will have a better chance of understanding each other than a mixed pair.
All of that is to say, I woke up this morning and realized one of the reasons I loved my grandmother so much—and the reason that communicating with her was easy for me—is because she was probably Autistic.
***
The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.
“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or “odd.”
—Unmasking Autism, Dr. Devon Price
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.