What’s it like to have autism? I have often found myself wondering this when out and about with my children, watching them interact with the world.
I am a parent of someone diagnosed with autism spectrum disorder and have found myself watching videos by autistic people, and reading some books written by autistic people to try and understand what it’s like to have autism. The overwhelming response seems to be that autistic people feel that the world isn’t made for them and only neurotypical people can really understand how it works.
There are specifics that are different for each individual, as no two people with autism are going to experience the world the same way. This article is going to spotlight a few autistic people and how autism feels to them and what we, as parents, can do to help the world feel like a more accepting place.
That was hard to hear as I watched each of the individuals explain their experiences as they went through life before they were diagnosed, being diagnosed, and after diagnosis. It would seem that most people don’t really understand how to interact with individuals that are neurodivergent and that the stigma that surrounds autism spectrum disorder doesn’t help with those interactions.
I have taken quotes from individuals on YouTube and a book that I have read that I felt did a good job giving a well rounded explanation of their experiences living with autism and how they feel. The following article will be predominantly based around those individual experiences and a tool to try and understand how autistic people may feel and their life experiences.
This isn’t a complete analysis on how every person diagnosed with autism spectrum disorder feels and their experiences. Every individual is different, this article is just a tipping point and conversation starter to help open the door to how someone else’s life experiences differ and what could possibly be started to help those in the future.
So, what is it like to be autistic?
This is the million dollar question and one that parents, teachers, and those that interact and have an autistic person in their life wonders. I have summarized what a couple of people have stated being autistic is like for them.
When asked what’s it like to be autistic? Dan from The Aspie World answered:
“It’s like being all by yourself, in a crowded room constantly. When you could be in bed relaxing. And then, all of a sudden at no fault of your own, at the drop of a hat, you’d be flipped upside down into a bath of cold water.”
He added, “Then thrown into the middle of the street with people looking at you while reciting the national anthem backwards. That’s how confusing life is for people on the autism spectrum.”
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No two stories are the same
Ethan Lisi discussed what it’s like to have autism spectrum disorder on the Ted channel. He had so many important points and they were all very eye opening.
In one of his examples, he compares two game consoles, a Playstation and Xbox. He states:
“They are both highly capable consoles with different programming. But if you put your XBOX game in your Playstation, it won’t work because the Playstation communicates differently.”
This is how he felt that the neurotypical brain versus the autistic brain compare. He continues by stating:
“The main problem with living autistic in today’s society is that the world just isn’t built for us.”
As a mother to a child with autism, that brought tears to my eyes and a tug at my heart. I wondered if this was how my child felt, because I know there are challenges. They can either be made easier or more difficult depending on whether people are unwilling to forget about in-box thinking and realize that there really is no box necessary to make a world that is accepting and comfortable for people with autism.
What does stimming and empathy have to do with it?
Ethan Lisi continues his talk and includes stimming and explains that it is the autistic person’s way of zoning out:
“It can often feel necessary for us to stim. However, it’s often frowned upon, and we’re forced to hide it. When we’re forced to hide our autistic traits like this, it’s called masking. And some people mask better than others.”
He talks about masking and adds, “Some people think that because of our ability to mask, that this is the cure to autism. However, all it really does is make us ashamed of showing our true selves.”
When discussing empathy and the stereotype that autistic people don’t have empathy he explains that he has a lot of empathy, he just doesn’t know how to react. He says:
“Emotional expression, however much or however little, is difficult for me. And that is because I am bursting inside with every single emotion one feels at all times. Though, of course, I cannot express it that way.” He continues, ” My inner feelings are unlimited, but my mind only lets me express extremes or nothing.”
What it’s like living with autism
In the video, 5 Things about Living with Autism, a young man named Andrew discusses his diagnosis and talks about how his brain is wired differently. The five examples include:
- Social skills and understanding
Andrew discusses how it is difficult for him to understand different things. He states that he doesn’t ‘get’ metaphors and takes them very literally making some social situations difficult and awkward.
- Having a complicated social life
He discussed how difficult it can be to find other people with autism spectrum disorder and how he lost touch with friends and people he got along with.
- Breaks in routines and environmental changes
He talks about how changes in his routine or even the way things look, feel, or other sensory stimulant can be difficult for him.
- Loud noises
He has sensory issues with loud noises that make him feel overwhelmed and can be very distracting, like his example of a fly in the room.
- Emotional skills
Andrew discusses that he has to think and concentrate on what he is going to say or how he is going to react to other people’s emotions. He says he can come off as quiet, but that his emotions can also be heightened when something bothers him, an example would be breaking the rules.
Different ways parents react
Tyler McNamer wrote a book called Population One. It talks about daily life as a person on the autism spectrum disorder. Some of the subjects he talks about is bullying, things that make a person with autism feel unaccepted, and how his parents make him feel.
In his chapter labeled My Mom, he talks about how his mom makes him feel accepted. He says:
“When I’m at Mom’s house, I get to be myself when I’m indoors. It’s like no one is there, and no one minds when I’m a little odd. But that’s what’s cool about being at Mom’s house – I get to release the oddness and get it over with. I don’t do it anywhere else because then people would think I’m weird.” He finishes the chapter saying, ” With Mom, everything is calm and not complicated. With Dad, it’s a different story.”
He talks about how his dad views Tyler’s life differently because of the way he views his world. There are more comments about his parents like:
“Both my parents are sometimes the same, sometimes different. They are like the Yin and Yang of my life.”
What parents can do
Parents can make all the difference. A lot of times parents are the cushion that autistic children have, their safe place.
Although there can be aspects that can seem a little overwhelming and difficult to understand. Certain things like sensory sensitivity, social anxiety, a fascination with special interests are very important, but making your child feel accepted for who they are seems to be the overall response people with autism want from parents, caregivers, and others they love.
Non autistic people have a hard time understanding a world where they don’t fit, that makes you feel that you don’t belong. Those individuals that aren’t neurotypical, like those with Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), and other learning or social skills disorders that have been bullied and felt different will have an easier time understanding autistic people.
Although I am a non autistic person, my child has told me they feel that I am one of the people who understands them the best because I don’t see things the way everyone else does. When they said that I cannot explain how great that felt because I knew they felt accepted somewhere, but I wanted them to feel that in more places and from other people as well.
Taking a moment and looking around at the world, getting to your child’s level and playing with the toys that they always want to play with, watching the videos that they always want to talk about, learning as much as you can about Steve from Minecraft and playing Minecraft with your child so that you can grasp what they are talking about and can actively have a back and forth conversation that helps them feel accepted while working on social skills is always a win.
See the world as they see it
There is a video that the National Autistic Society put out called Autism TMI Virtual Reality Experience. It shows how something that can be a part of everyday life, a trip to the mall, can look to someone on the autism spectrum.
The first thing that you notice is that the child is experiencing some sensory processing difficulties as things start happening around them. Things like the sound of balloons, bright lights, things that affect all five senses and the child starts having a meltdown.
The mother in the video removes the child from the overwhelming environment, makes eye contact, talks to them in a calming way, letting them know that they are safe and helping them to take long and calming breaths, bringing the child out of being overwhelmed.
This is an eye opening video that puts people in the autistic child’s shoes and shows things from their perspective. It also demonstrated how the mother in the video uses both verbal and nonverbal communication to communicate with the child by using a calming voice while slowly using her hands to show the calm down sign.
In the end most people want to be and feel accepted and our children on the autism spectrum are no different. Making sure to take the time and really get to know them and know what helps them interact in the world that is just starting to open up and really learn about autism and what it means to be autistic.
Always strive to be the calm piece in your child’s world, there are so many resources that can help parents learn ways to cope with the array of emotions that go along with being a parent of someone with autism and offer ways of learning to better understand your child’s world.
Dave Willis once said:
“There are no perfect parents, and there are no perfect children, but there are plenty of perfect moments along the way.”
Fixers UK. (2017). 5 Things About Living with Autism. YouTube. https://youtu.be/t8HuW5cDO4c
Lisi, E. (2020). What It’s Really Like to Have Autism. YouTube. https://youtu.be/y4vurv9usYA
McNamer, T. (2013). Population One. Aviva Publishing
National Autistic Society. (2016). Autism TMI Virtual Reality Experience. https://youtu.be/DgDR_gYk_a8
The Aspie World (2022). What’s Is It Like to be Autistic? YouTube. https://youtube.com/shorts/FIHV7J0Fy7w?feature=share