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15 People Describe What Living With Autism Is Really Like

We all know that, 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 can be tough to really do.

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 15 people about what their lives are like with autism is a great way to spend a few minutes.

15. 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 :/

14. 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.

13. 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…

12. 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.

11. 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.

10. 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.

9. 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 fuck 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 shit.

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 bullshit 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.

8. 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.

7. 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.

6. 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.

5. 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.

4. 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 hated 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.

3. 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.

2. 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”.

1. 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!