Until you walk a mile in someone else’s shoes, you can never know what their life is like. Which is all well and good, but when it comes to a medical diagnosis, that’s pretty much impossible.
It’s important that we try our best to understand what others lives are like, and what their struggles and contributions might be on a daily basis – which is why listening to these people about what their lives are like with autism is a great way to spend a few minutes.
1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. That’s uncomfortable.
Imagine if human sensory had settings, and all of them were at maximum.
7. 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.
8. 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.
9. 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”
10. 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….
11. “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.
12. 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.
13. 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.
14. 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.
15. 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 a** 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.
16. An excellent point.
First I’d have to know what not having autism is like…
17. It’s hard to explain.
To me it feels like wanting a hug but not wanting to be touched.
It’s hard to explain & makes you feel so misunderstood :/
18. Everything costs something.
I got so good at camouflaging most people don’t even notice something’s odd. And they seem to think that since I’m not “visibly” autistic, I can’t be on the spectrum.
But they don’t know the price I’m paying for trying to act normal, they don’t know it consumes all my energy to do it for just 10 minutes. And they don’t know the fear of not even knowing who you truly are.
Like, what if I cut off all of the social camouflaging and masking? What kind of person would be left? I don’t even know anymore.
19. They’re adept at mimicking.
I am 28 years old and have no idea who I am. Because I’ve spent my entire life copying those around me so that I can figure out how to exist. I have a different mask for each person I run into. And I don’t know if any of them are really me…
20. They have different instincts.
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).
The reason I have such a difficult time explaining myself is because there is just SO MUCH information to consider and filter and it’s very difficult to narrow down and delegate all this information to only that which is truly important and can be interpreted by the other person I’m talking to. Everything seems relevant. Everything seems connected. And there is just…SO. MUCH. of it.
Neurotypicals can do this sort of filtering and simplification instinctively. I can’t. This is why I like writing so much. With writing, I can easily edit what I want to say before I say it. I have extra time to select the perfect words to use. I don’t have to worry about nuanced things like voice inflection and body language.
I am 1000% more eloquent in writing than I am in speech, because my writing, (including this very comment) has been heavily edited and I have shaved off all the extraneous and confusing tangents that people would normally hear when I’m speaking to them.
21. Tough every day.
“It’s feels like your in a play and everyone has the script apart from you”.
Not my quote but I saw it somewhere and I resonated with it so much.
22. They do have feelings.
Sometimes it feels like the world is screaming at me. The feeling is so overwhelming that, no matter what I’m doing, no matter how much I may normally enjoy it, the only way to make it stop is to drop everything and run back to the safety of my bedroom.
Often I don’t even realize that I’m not interpreting a situation differently than most other people.
Just because I express things differently and maybe my affect seems flat doesn’t mean I don’t have emotions or can’t feel sympathy.
Of course, my flat affect can also signify my deep, deep depression which, like anxiety, afflicts people with autism spectrum disorders at about four times the rate found in non-autistic people. But it definitely, definitely doesn’t equal a lack of empathy.
I can only speak for myself. Everyone is different.
23. Metaphors are useful.
Let me give you a comparison for how this… Doesn’t really have an answer.
Last week, my friends invited me to a round of tabletop simulator. They were playing an improv game where you tell a story.
I nearly had a panic attack from not knowing what the f**k I’m doing and had to leave.
Once a week, I am in a tabletop rpg group.
I get nervous, sometimes a little panicky, but always manage to do cool s**t.
Once a week, I am the DM of my own Pathfinder campaign.
I have never had issue going through it and doing the improv and such required to be a dozen characters and roll with whatever bulls**t my players do.
Theoretically, these should get similar responses.
They do not.
This is how it works for me, and it will be completely different for everyone else on the spectrum.
24. They like their spots.
I like very specific objects. I quickly develop really weird attachments that not even I can explain; in school, for example- I would always become attached to specific chairs in the auditorium, or in a classroom even.
Any break from that order would throw me in a loop of anxiety that I could hardly escape from. I even remember where they were to this day; 2nd row from Stage, 3rd seat from left aisle.
No- one I spoke to could comprehend why I cared.
25. They’re just not sure.
Autistic actor here. Surprisingly, improv goes okay but there’s gotta be warm ups. Some actors can just jump right into that sh%t and I am not one of them. But once I’m in that headspace improv isn’t terribly hard.
Physicality is a bi*ch though, and that goes for all of acting. Some people just know what to do with their hands and I, once again, fall short there.
26. They have certain needs.
I’m a special ed teacher, and this “certain seat” is just a fact in my class. Any time I change the seating chart, I need to take into account the needs of my students with autism.
I’ll mention some of my other observations, but respectfully, autism is a spectrum and I can’t speak for anyone.
My students with autism sometimes have a hard time with changes in the routine. Not as severe as the movie Rainman, but I try to keep things predictable and give advance warnings…. however, it’s a little tricky, because for some kids, if I tell them we are doing something different in a couple of hours, they will begin to “get ready” (and anxious) way too early.
Even a change for the better, like no homework this week, can be agitating. The weeks before vacations can be tense.
Sometimes there’s a need to be “ready for anything” like having an entire pencil box stuffed with carefully sharpened pencils.
There’s a certain kind of humor that I see a lot, related to the sounds of words. Kind of like puns, but it’s only funny to the person, like the way that the name Matthew sounds like math is hysterically funny somehow…
There’s a certain stubbornness that can come across as defiance or ego if you don’t understand what’s going on. As a teacher I try really hard to get my students to notice how their “different” behavior may be perceived and how they can communicate what they may need.
27. It’s like being an alien.
Imagine you’re an alien. And you’re at school learning about humans, but you don’t pay attention to classes and you cheat your exams. And now you’re send to Earth and have to fit in with humans.
You don’t understand the society or unspoken rules and there’s a lot of anxiety involved and you have to try to pretend you’re like the others.
Sometimes it works, sometimes it doesn’t…
That’s how Autism feels for me. Like being among humans without having a clear idea about how they work.
28. Give them a head’s up.
It has only been as a mid 30s adult who has gotten a diagnosis (or more specifically when it clicked I was on the spectrum) that I realised why I h**ed things like catching up with good friend with less than a days notice, even when totally free.
It’s like the moment a plan is set in my head, any deviation is like nails across a chalk board.
Another example is when we go to leave a function/ party. The second I have decided it is time to leave, any moment spend starting a new branch of the conversation or the like, or people saying they should leave but not getting up and actually doing it, it makes me feel physically uncomfortable.
Don’t get me started on unreliable public transport. There is a reason I consider a car an essential.
29. It’s not one size fits all.
So please keep in mind, everyone with autism is different.
Sensory issues are…. things around you feel big but other people don’t notice. It’s like how after getting off an amusement park ride you can feel a jolt of excitement or stimulation, but it keeps going on and it is just uncomfortable.
Maybe a better way to put it is picture the feeling you get when something scrapes against a chalkboard. Crank it up a bit. Now a bit more.
That’s how some people with autism feel when they are having sensory issues with clothes, for example. You just want to get out of the clothes because they are too tight, or scratchy, or they just make you feel weird (not in an psychological way, but a physical way) and you just want to get out of them. You know they’re clothes, but you just don’t like them.
I am a decently verbal person – I can write rather well (Although this post feels rather jumbled as it is primarily stream of consciousness) – but I wasn’t always able to communicate. When there are issues communicating I will gesticulate heavily and attempt to get my thoughts out by word association.
Socially, I suck. I have pretty much no social skills – partially because of social withdrawal due to bullying as a child, but that is another post altogether. Now, unlike what some people might think, people with autism do find things funny. I just have trouble figuring on when something is “conventionally” funny – and I just don’t understand some humor that others find funny, because it just makes no sense to me. Reading people’s faces is the hardest – along with the tone of voice, especially if someone is jokingly yelling, for example. They also like changing expectations and expecting you to know where they are going. It’s like everyone else got the rulebook except us.
Many people with autism rely on routines. Personally, routines help me know what is coming and plan things in my head for possibilities of what may occur. I can’t predict everything, but I can try to work out things that I think might happen and potential responses. However, this doesn’t prevent me from thinking of what I should’ve said when I am trying to fall asleep at 3 AM and obsessing about it, just like a nondisabled person.
Forgot one – people like to infantilize us.
So, i’m 30. I can’t drive and I don’t work right now. My parents usually drive me to doctors appointments. They come in to the appointments with me sometimes, especially on first visits to the doctor. Whenever the doctor asks a question, they ask my parents.
They then direct the doctor to me, I answer, and then we continue. When they ask my medical history, I will rattle it off (I have a large chunk of it memorized), then look at my parents to get confirmation.
30. They want to be invited.
One thing I wish more people knew was how frequently we are excluded from many aspects of society. I never had any friends growing up, so I had a very bizarre childhood of growing up apart from my peers.
When you’re a bit odd people don’t feel like they have to treat you with even the most basic level of respect. I’ve always gone out of my way to be very kind to everyone I’ve worked with but the majority of people I’ve worked with have treated me with open hostility.
In one circumstance I even had a job offer revoked because they discovered my autism during a pre employment psych exam. When I appealed to their disability rights coordinator he told me I wasn’t qualified because of my autism and that I was like a “man in a wheelchair trying to run in the Olympics”.
31. They want to sit it out.
For me, it feels like I’m being forced to participate I’m a society that actively works against me.
Almost like being in a terrible play where everyone has a script but me, and I get blamed for it.
I’m so glad I read through these; some of these folks are so eloquent.
If you or someone close to you is living with autism, share the experience with us in the comments!
