What is Autism?
Autism is a natural variation of what it means to be human, like being left-handed or being near-sighted. The first official diagnosis of autism was made in the early 20th century, but there’s evidence of Autistic individuals before then. Being Autistic is nothing new! We have been around for as long as humans have been around. What’s new is society's growing understanding around autism. For us, this growing understanding means a greater understanding of ourselves and a greater ability to advocate for ourselves.
Autism colors every aspect of our lives. Our Autistic brains work differently from what is often portrayed as the “norm”, meaning allistic (not Autistic) or neurotypical (not neurodivergent). Even though we have always been around, it can often feel as though society wasn’t built for us. Everything from the spaces designed for us to work in, hang out in, or live in, to the societal rules agreed upon to succeed, can make us feel different, out of place, and even disadvantaged.
Communication
We have different strengths and weaknesses associated with communication. Some of us may be gifted wordsmiths with large vocabularies in our areas of expertise. We may be skilled at logical thinking or abstract thinking and able to construct convincing arguments or problem solve with proficiency. Some of us may rely on various strategies to communicate such as echolalia or scripting. Echolalia is where we repeat something we previously heard. It can be a form of stimming, a part of learning language, and a form of communication for those who might struggle to find the right words to express their thoughts. Scripting is where we prepare for social encounters by writing out or repeating to ourselves things we wish to say or answers to anticipated questions. Some of us are non-speaking or minimally-speaking and may rely on methods of communication such as sign language, gestures, communication boards or other forms of augmentative and alternative communication (AAC).
There are rules in each culture around how people are expected to communicate. For example, people may be expected to use “white lies”, which are loosely defined as “harmless” lies, to make someone else feel better. However, there is a conflicting cultural expectation to be truthful rather than dishonest. Cultural/societal rules are not always clear. We may not understand communication expectations, or we may just disagree with them and prefer to communicate differently. We may be more blunt and forward. We may not always manipulate our voice or facial expression to convey information. We may not default to smiling or feel comfortable looking you in the eye when talking. Because of all this, we are often perceived as rude even when we are not trying to be. A good rule of thumb is to not assume intent and extend others the benefit of the doubt.
Sensory Experience
Sensory processing makes up a large part of life. As humans, it covers everything we see, smell, touch, hear, and taste. Everyone has different sensory preferences. Some may like the taste of chocolate over vanilla. Some may prefer the sound of white noise while sleeping, while others may need silence to fall asleep. People have favorite scented candles and favorite pieces of art. All these are true for Autistics as well, but the difference is how sensory experiences affect us. Some of us may have reduced sensitivity and seek out intense sensory experiences. Others may have heightened sensitivity and avoid anything too loud or overstimulating. For us, it may not just be a preference to have the lights turned down or to avoid certain foods or certain scents. Instead, these can be ways we avoid discomfort and even pain. Many cultures and environments - including that of NYC - can be unfriendly to those of us who are sensory sensitive. We may not feel welcome at some places that are designed for those with different sensory palates than us.
Routines, Repetition, Interests
Much of our society is built around routines. It’s common for someone to work from 9am to 5pm, Monday through Friday. People will often wake up at the same time and go to sleep at the same time. Most people don’t like an unexpected interruption in their routine. There’s just something in the human brain that likes routines - and for Autistics, the inclination towards routine can be more pronounced. We may include more of our day-to-day lives in our routine, we may be more rigid in defining our routines, and we may be more reliant on those routines going according to plan. An interruption in our routine may be like an unexpected road closure - something that halts our progress and requires us to attempt and problem solve our way through. It may cause anxiety, overwhelm, or otherwise negatively affect how we feel. For those of us who are less reliant on routines or who were able to learn to better handle interruptions in their routines, an interruption may be less impactful.
Everyone has an interest that they regularly engage in. For us Autistics, how we engage in our interests may differ. It’s not uncommon for us to have particularly narrow interests and to engage in our interests more thoroughly and consistently. The average neurotypical person may be interested in baking, while an Autistic person may have a more narrow interest in chocolate chip cookies. The neurotypical person may engage in this interest by regularly watching The Great British Baking Show and trying out new recipes they find online. The Autistic person may engage in their interest by researching the history of the chocolate chip cookie, mapping the cookie’s development over time, categorizing the various recipes available today, and - through treating their kitchen like a science lab - determine exactly how each ingredient and variable affects the outcome of the cookie. This ability to hyperfocus and dive deeply into a narrow topic is not exclusive to Autistics, but it is a common Autistic experience.
Autism is a spectrum, which means how we communicate, how reliant we are on routines, how we engage in our interests, and other common Autistic experiences will be different for each of us. Or, put another way: if you’ve met one Autistic person, you’ve met one Autistic person. We are not all the same. We share much in common with each other, but we have different strengths and weaknesses, and different experiences.
Here’s what some of our members have to say about being Autistic:
“It’s like a different culture almost. We all speak the second language of “allism” to some degree or another, some more fluently than others, but when you are together with people who speak your first language it feels so much easier to be understood.”
“For me it’s like being an alien living on a different planet. Like being part of a different species and learning how to act like the majority of this species you’re living with. But no matter how hard you try, it always feels off.”
“Being a late realized Autistic is like being told you’re right handed all your life when you’ve been a southpaw the whole time. I’ve been leveling up skills for a different person almost, or at least told to. Now I’ve got to rebuild my character using the right stats.”
“Our mind operates by different rules than your mind. Particularly - we experience sensations differently, we operate by different social rules, and we think through things differently. A useful analogy: we’re playing a different game, but on the same board and with the same pieces. Try to understand and help us in our game.”
“Autism manifests itself and feels utterly different to each of us; there is more divergence between autistic brains than there is between those of ‘neurotypicals.’ But at its core it’s something we all share: we experience the world in a deeper and more intense way. It is this intensity which can make the world a difficult place to be in, but it is also the driving force behind the creativity, vitality, and, perhaps, beauty, that is at the heart of what it is to be autistic. Oh, and trains.”
“For me it makes me feel like I live in a universe where I don't belong in. Like a fish out of water story if you will. I feel like I'm a different species than humans. I try to understand humanity because well, I have to. However no matter how hard I try. I just can't quite seem to get it. I'm always confused. From my point of view I see society as different. Always having beliefs and things that I don't get. I constantly question about my existence and what purpose I have. I know I'm put on here for a reason. But for what? I am figuring things out. Though luckily I feel like everyday of existing, I do bring a ton of positives that I like to share. I like telling people it's ok to be different and encourage outside the box thinking. Being mainstream isn't the answer to everything. Having autism despite feeling like an alien, has me show people new ways of thinking and gives a new way of solving things. Sure people might not appreciate my outside the box and creative thinking but those who practice it from me. It helped many. I think that's why I exist. I exist to show people that being unknown isn't bad. Far from it.”
“When you finally really deeply understand the immense variety of human experience, autistic or otherwise, you can no longer feel comfortable with how society is set up for one type of person. Autism breaks the human world and builds it back up again better than it was. Learning about Autism feels like unlearning as much as it feels like learning.”
“For me it's experiencing and feeling everything intensely, all at once. It's being able to observe something in multi-layered and in multi-dimensional ways.”
“It's like being a screw in a world of hammers and nails. We can solve some of the same problems but most of the time our methods will be a little different.”
“For me it's like I'm living in a world where everyone has telepathy and I don't and I didn't even know that telepathy was a thing. And everyone else thinks I have telepathy just like them. And then when I finally figure it out people think I'm lying. It's weird because my whole life people told me I'm different and then when I started saying I'm autistic suddenly the same people are saying that I'm not.”
Wondering if you might be Autistic? Visit our adult diagnosis resource!