Unless you live with an affliction all day, every day, for all or most of your life, you can never really understand what it’s like – but with something like autism, which affects so many individuals and families in such a wide range of ways, it’s important we all do our best to educate ourselves.
So, let’s listen up as these 16 people with autism tell us what their daily life and interactions are really like.
16. Always on high alert.
To build on this, there is no “turning off and relaxing” in a conversation. Every time I’m talking to someone I feel like I have to choose what I say very carefully, as if I where talking to my boss.
I run through a mental flow chart of appropriate responses and try to make sure I stay on topic and don’t talk about one of my fascinations and monopolise things.
Also don’t mutter interesting words or pronunciations you heard from someone else under your breath just thinking about it.
Also, forced eye contact to appear normal.
15. There are no corrective lenses.
Let me give you a non-autism example first.
At the age of 8, I was diagnosed as legally blind — worse than 20/200 vision in both eyes. (20/250 on one side, 20/450 on the other.) Nobody else noticed because they thought that all the weird stuff I did to cope just seemed like weird little personality quirks or developmental disorders.
Then at the age of 8 I got my first pair of glasses and found out that there was a whole sense that everybody around me had had all along, that I hadn’t — a possibility that had never occurred to me.
I had noticed that other people could play catch much better than I could, that they could navigate unfamiliar spaces better than I did, that they could recognize objects from farther away than I could, but it never occurred to me that they had a sense I didn’t have. I just thought they were smarter than I was. I just thought I was really stupid. Otherwise why could they memorize room layouts faster than I could, calculate where the ball was going to show up based on shifting vague silhouettes in the distance more accurately than I could, decode fuzzy shapes and colors faster than I could? Obviously they were just smart and I was just stupid.
So imagine how I felt when I found out that other people can (mostly, less often than they think) tell when they’ve hurt somebody else’s feelings just by looking at them? That other people can see all kinds of subtle gradations of emotion that are invisible to me? It didn’t occur to me until I was in my late 20s or early 30s and read my first magazine article about autism as a spectrum disorder that I realized that, once again, other people weren’t smarter than I am about other people’s internal states — they literally have an instinctive sense that I lack.
But there are no glasses for autism. So 30 years later, I’m still having to navigate emotional conversations the way that 6 year old me had to navigate a room after the furniture had been moved — more slowly than anyone else and with intense concentration.
14. Just a bit off.
Even when you camouflage really well, people often think there’s something slight weird or different or difficult about you. It’s a massive cognitive burden, especially when you’re doing other things that require a large amount of processing power from the pre-frontal cortex, and can eventually come around and bite you in the ass if you stumble into a position where you’re suddenly expected to have normal people skills.
Sadly, the second part is what destroyed the life I loved, the one I had spent a career building.
13. An excellent point.
First I’d have to know what not having autism is like…
12. The sad truth.
Autistics are not judged for the 1000 times the get the mask right, but for the one small fleeting moment they are either too tired or make a mistake and let the mask drop.
11. That’s not a great feeling.
Like everyone else is in on an inside joke that you don’t know.
And when you DO know it, everyone thinks you don’t so they leave you out of it still.
10. You just want to be yourself.
As a woman on the spectrum, masking is the most exhausting experience.
I feel like I’ve become more e introverted over the years so I can avoid having to mask around people as much as possible.
9. No reason why.
Feedback loop.
Sometimes things just get stuck in your head. Not just songs or movies, but things you or someone else has said in conversation, which will then be repeated for no apparent reason.
I catch myself saying the same things I’ve already said under my breath, but I’m not trying to understand the what or why of it. I just do it.
8. There are people who are doing it right.
My boyfriend has some of these things as he’s diagnosed with high functioning autism. One time at a job he worked at one of the co- workers came up to him and asked him if he had autism. My boyfriend was terrified because he thought he would tell the manager if he came out and told the co-worker the truth he has it.
Anyway the co-worker was nice and told him he could see it in his behaviors, and by how he works etc. Just wanted to tell my boyfriend that he had a son that has autism and just wanted to support him.
7. That’s uncomfortable.
Imagine if human sensory had settings, and all of them were at maximum.
6. The rules are a mystery.
I was diagnosed with Asperger’s as a kid, which is grouped into the autism spectrum.
Many sensory triggers, specifically sounds, are amplified for me. It’s a blessing and a curse, I have little trouble hearing people but shouting can be very overstimulating.
It’s also very difficult for me to explain myself, and I often have a hard time conveying my thoughts (including this post, I’m probably overlooking a whole plethora of other things I do).
And then, there’s the social aspect. Growing up I was often singled out for not knowing what I’m “supposed” to do socially, as if it’s an unwritten rule I was never told. I can’t pick up on subtle hints about how someone’s feeling (body language, etc) to save my life, so someone has to be extremely direct in order to tell me what they’re going through. It’s lost me a lot of friends as a kid. Thankfully, I’ve met some good people in my college life so far and all of them have been very understanding with me.
5. An uphill battle.
No matter how hard you try, no matter what you say, you can’t make people who don’t feel the same truly understand how bad it is.
Everyone thinks you’re exaggerating or making excuses for yourself.
4. Short and to the point.
i have an autistic friend who described it as “everyone else got instructions on how to be a person and i just didn’t”
3. It can be lonely.
26m, athletic, successful career as a welder. Absolutely no idea how to socialize, and no desire to. Completely alone, no friends my age, especially girls. If I’m with more than 2 other people I completely shut down can’t process all the information I’m taking in
If I’m lucky enough to get a date there is never a second and I don’t understand why. I’ve never been mean to anyone in my life. I work by myself and then I come home and work on my firetruck, which I’m completely obsessed with.
I go on vacation by myself, never anywhere with crowds, usually some remote fishing spot where I sit by myself all day. I’m the human definition of an island.
Also should add huge anxiety issues, scared of planes, boats, elevators, falling asleep, it goes on….
2. “Normal” is not a helpful word.
I got diagnosed at 20. I have way more faith in my doctor much more than all of the people who say I don’t have Asperger’s. I’ll do something and people will tell me it was weird or I should have been able to read their body language, and then I tell them I don’t understand physical language and that I’m in the spectrum.
Then all of a sudden that’s not true and I can’t be because I’m so normal. Somehow I’m weird and normal at the same time. I just live my life how I used to and don’t change much. If people can’t handle it that’s ok, but I have been in my routine for well over a decade and it works for me. It’s all I can control and try my best to handle everything in between.
Some days are good. Some days are tough. But I’ve made it through all of them, even though I want sure I could.
1. Social situations are hard.
Being really sensitive and self-conscious around everything.
Also having really good acting and mimicking skills in conversations 24/7 otherwise people think you’re weird af.
I could read these for days; it’s so important.
If you or someone you’re close to has autism, add your own facts to the list in the comments!
