Every week, roommates Micah Peace and Emma Johnson invite about a dozen of their twenty-something-year-old friends to their home for Sunday night dinner. It’s a diverse group — or more specifically, Johnson says, this party of friends is neuro-diverse.
“I would say we’re at least 90 percent neurodivergent,” Johnson said. “There’s a wide variety of disabilities represented.”
Peace and Johnson are both autistic, and so are some of the guests at their weekly dinner. On a recent Sunday, Johnson prepared a french toast casserole from bread she made herself, and served it to friends gathered around their living room coffee table.
It’s a free-wheeling dinner party, where scrambled eggs and other breakfast-themed sides are distributed on paper plates as they materialize from the kitchen, while guests play Super Smash Brothers in the background.
“It’s going to be probably a little loud, there’s going to be a lot of smells, because I mean, you can smell the bread,” Johnson said, explaining that all that stimulation can sometimes lead to sensory overload for her and some of their guests.
“What we have done is say things like, ‘Hey, if you ever need to just step outside, it’s not going to be weird, I’m not going to think anything bad of you. If you need us to turn down the volume, it’s not a big deal.’”
In a simple way, by building this tradition, hosts Johnson and Peace are celebrating autism acceptance and neurodiversity.
“This is my tribe. This is my community,” Peace said. “I don’t know who I am without Emma.”
“It really is like people talking about ‘found family,’ which we are very lucky to actually have, but I have a found twin,” Johnson said, continuing Peace’s thought.
‘If You’ve Met One Autistic Person…’
Johnson and Peace have been friends since they were in elementary school, now going on nearly 20 years.
The two have a lot in common, even beyond being autistic. Both identify as queer, and gender non-conforming, and so do many of their friends. Peace uses “they” pronouns and says that’s also common in the autistic community.
“I think that we aren’t wired, necessarily to just fall into all the social norms without thinking about them,” Peace said. “You know, we think about them.”
Peace thinks of being autistic similarly to how they think of being gender non-conforming. They don’t see autism as a disorder, but as a different way of interacting with the world.
“Autism isn’t a mental illness, it’s a neurological way that a person is wired. It’s a type of brain,” Peace said.
Johnson and Peace may have a lot in common, but autism can mean very different things for different people. Peace calls it a constellation of characteristics — things like sensory sensitivity, difficulty with communication, repetitive body movements and having intense, special interests.
“When people talk about the spectrum, they think that it’s like a line from not autistic to very autistic,” Peace said. “And actually, it’s a spectrum; more like the night sky full of stars.
“You know, everybody might have a trait here, a trait there. Everybody has their little quirks, right? But you don’t have a constellation until enough stars connect to make a picture.”
Peace and Johnson share a lot of the same stars. The best friends forged their friendship at their Catholic elementary school. In the first grade, they were sometimes sent to the hallway to read together out of a second grade textbook, because they could read at a grade level ahead of their classmates.
“One of my most vivid memories is sitting out in the hall with Micah right next to the door, teaching ourselves how to play Cat’s Cradle out of the second grade reading book,” Johnson said. “It’s not about being the smartest kid in the room, it’s being on a literal different page in a literal different book than the rest of your classmates.”
Peace and Johnson say that when they tell someone they’re autistic, they are often met with disbelief. Delays in communication are early signs of autism that often cue parents to seek a diagnosis for their young child.
Peace frequently participates in local autism advocacy events, and says they often gets this reaction from parents:
“‘Why should I listen to you, you’re not at all like my child?’ To which I say, ‘I was a kid, once. You know, of course, I’m not like your child, I’m an adult. And no one is going to be just like your kid. That’s a good thing.’”
There’s a saying in the autism community, that if you’ve met one autistic person, you’ve met one autistic person.
“What I like about that phrase is that it celebrates, the individuality and the diversity of the autistic spectrum, and how many different ways that you can really experience not even just your autism, but I mean, your mind,” Peace said.
“I think the same is true of neurotypical people, right? If you’ve met one neurotypical person, you’ve met one neurotypical. But we’re not usually afforded that same grace, that same sense of understanding.”
Being A Self-Advocate During Autism Awareness Month
The Autism Society named April “Autism Awareness Month” in 1970, kicking off what is now an annual awareness campaign. Peace is an organizer and self-advocate in the Louisville autistic community, but they say that April is a hard time for them and many of their autistic friends.
“In a lot of ways. I used to ride the bus past this house every day, and in April, they would hang this horrid, just this really ugly flag, and it was like an American flag, but puzzle pieces,” Peace said.
The National Autistic Society adopted a puzzle piece logo in 1963, and it’s become a common symbol for autism. But some autistic people, including Peace, question what it stands for. The original image featured a crying child on the puzzle piece.
“It implies that we’re missing a piece of something that makes people human,” Peace said.
To be clear, some people with autism embrace the puzzle piece and ascribe different meaning to it. Peace acknowledges that it would be possible to reframe the symbol as something positive.
“But we’re not there yet,” Peace said. “And neurotypical people can’t be the ones to say, ‘Oh, this is why I got this tattoo, or this is what it means on my license plate.’ It’s not for you to reclaim.”
Autism Acceptance On Its Way To Overtake Autism Awareness
Heidi Cooley Cook serves autistic individuals and their families at the University of Louisville’s Kentucky Autism Training Center and has worked in the field of disability services for 17 years. She says the public messages about autism are changing.
“I think in the past there was definitely discussion of cures, and of causes, or wanting to stop autism — and that, along with language is definitely shifting,” Cooley Cook said.
Cooley Cook said many people who have been diagnosed with autism now prefer to be referred to as autistic, like an identity, rather than saying he or she is a person with autism. In the autistic community, identity-first language is slowly beginning to overtake person-first language, which has often been endorsed in training for professionals who serve populations with disabilities.
“We’re seeing that spread not just with adults, but also with adolescents, as well as families with young children who are on the spectrum identifying with identity-first language versus person-first language and reclaiming autism as something to be celebrated,” Cooley Cook said.
Autistic individuals like Peace and Johnson are also spreading that positive attitude toward autism. They want to reclaim April as Autism Acceptance Month, and they’re not alone.
“The autism community already treats it as such. We celebrate autism acceptance month together, we call it that to one another, and are doing everything that we can to make it happen,” Peace said.
There’s a movement of autistic people who agree, and they organize mainly online. The Autistic Self Advocacy Network promotes the movement through AutismAcceptanceMonth.org. Local advocacy groups like the Kentuckiana Autistic Spectrum Alliance and Autistics United Kentucky also promote those efforts.
Peace and Johnson say they can’t speak for all autistic people. So I asked what acceptance means to them.
“Acceptance is an action, whereas awareness is much more passive,” Peace said.
“Acceptance would look like, one, people stopping saying, ‘I can’t believe you’re autistic’ every time I tell them,” Johnson said, as Peace pointed out, “You wouldn’t tell someone, ‘You don’t look Jewish.’”
“Accepting that I can, I can be autistic, and you don’t even need to feel any type of way about that,” Johnson said. “Like, I would like to shoot for a straight neutral.”
While they may be waiting for the rest of the world to catch up, the two friends say they have found acceptance in each other and their own circle of friends.