People On The Autism Spectrum Tell Us About Their Everyday Experiences
Usually I write an intro for these articles, but I feel like it's one of those times that I need to get out of the way and let people tell their own stories. Here, people with ASD share their thoughts, feelings, and stories. Thank you to everyone who shared.
If you would like to check out more, be sure to check out the sources at the end of this article. Comments have been edited for clarity.
For me, horrible. I am lonely. I want to be around people so much. I love talking, they taught me to talk and forgot to give me others to talk to. I want to work, but I need supervision.
I hit my head on things when I am upset. I hate that. My arms flap when I am excited and people stare. People stare for other reasons too
I love children and children love me, they love to talk to me and ask questions, or talk to me about cartoons. I would never harm anyone, but their parents act like their child is in danger and it makes me feel like I am a terrible person.
Luckily now, I am friends with an 8 year old and she is awesome, loves lego and we have a lot of talks about who is the best Disney princess, explorers, (I told her about an explorer in lego Johnny Thunder who explored tombs and she has suddenly decided to love the idea), and also about doctor who and time travel, (The back seat of her car is a time machine when we go anywhere!)
So I guess in short, Autism is lonely, it can cause a lot of pain, it's like being trapped in a body that is only half loaded. Just because people are aware of autism or accept autism, doesn't mean they will make time for those with autism.
Also I wish I could dress and shower myself and care for myself better and also go out on my own. I would go out every day.
Things can be hard. I need help to get dressed. Often, I put a pillow over my eyes so that I can shut out some of what my brain is seeing so that I can process any touch. I hate noises they make me hurt and scared. I often don't hear what people say, because I have some auditory processing problems when other things are going on. I find certain touches hard. I have lots of toys I use to stay calmer. Like ribbons from my bag and a toy turtle that is bright and full of sand so its weighted.
Friends always make it easier.
I was diagnosed with aspergers at the age of 11. I feel like I'm part of a play where everyone has the script except me.
While I live a pretty normal life, I have a lot of issues with sensory sensitivity. Like, loud noises, bright lights, certain food tastes, smells and standing in crowds of people. These things make me feel a bit stressed out resulting in various issues like headaches and digestive problems.
While we're on the subject... certain non-autistic people have the misconception that those of us on the spectrum would "lack empathy". That is simply not true. We often have a hard time to reading people, but we certainly do not lack human empathy. That needed to be said.
Social interactions that come to others naturally, require a lot of thought and planning in my situation. For lack of a better analogy, I have mental checklists for every social event under the sun.
Obsessions are amped up from non-autistic people, as are following rituals, every night when I get home, I have dinner, and watch the Simpsons, no ifs ands or buts.
I work as a chef, and my supervisor and I have a certain codeword, (traffic), that if I mention it out of the blue, it means 'I need to cool off for a few, I'm getting overloaded here.'
The kitchen environment is fairly stressful, but we have a great team that I know has my back, and we have a fairly simple menu, so it's more a high volume of orders that's stressful. My supervisor/head chef is a great guy, and I had the foresight to mention that I have autism the first service we worked. It's a fairly new place, so we were there together from day one. We often hang out outside of work, so we are pretty in touch with each other. He's not a pushover though, so I know not to take a break if we are deep in the weeds. Since we opened mid-October, I've only had to use the code word once, (Admittedly, he soon followed me in banging our heads against the door after an unusually bad experience with an apprentice). We have the sort of relationship where we joke around with each other, he calls me Gump, I make fun of his misspelled arm tattoo, that sort of thing.
Social interactions - when I say mental checklists, it's more like a dichotomous key in my head, that's really drawn out. For example, I frequent my local nightclub, so my checklist may read as follows:
Nice security guard- light banter, don't get startled by the joke noogy. Jerk security guard- I.D, don't hang about. Bar quiet- engage bartender in conversation, ask for cocktail. Bar packed- just order. Women animated in conversation- leave them be. Women bored/lonely looking/ smiling at me- approach and engage in banter/attempt pick up line, etc.
All this is almost in a robotic voice in my psyche, ie. not natural at all.
If my routine is disturbed, I get moody, but it's not a catastrophe.
Lastly, if you are unsure whether or not you have autism, please ask a professional. When diagnosed, the doors to managing the system will be a lot easier to open.
My go-to analogy is to imagine being in a country where you don't speak their language. You don't have a phrasebook but you do have a translation dictionary. So you are speaking the words, but the syntax is way off, not to mention accent and pronunciation. You might think you're making sense and communicating well, but really people will be confused by you.
Those elsewhere on the spectrum will, of course, have different feelings.
You know that time you said something stupid and everyone looked at you like you grew a second head? Imagine feeling like that every time you talk to someone.
It's hard, not only socially but also in school. I can't understand what the questions are asking me, because I always interpret it in another way. Especially the questions like, "Why did the author write this, how does the author feel?.. etc." I would always question if I was reading this answer correctly, and my teachers would get frustrated with me, due to the excessive amount of questions I asked.
Socially, I've managed to cope with my autism, I was quiet in middle school and a little bit of high school. I figured out I'm best at making myself look ridiculous in front of people. I now just laugh at myself and I seem to fit in, however, most of the time I don't really catch on to my friend's jokes or opinions.
It's different for everyone. I have Aspergers Syndrome, a form of Autism that affects me more socially than anything. I live a normal life in that I work full time, I go to university too. I don't need/want care or supervision. Here are the ways which it affects my life:
I have my interests and obsessions - I get intensely interested in something for a period of time. Mine tend to go for about a year - in the past it's been burlesque, pin-up girls, medieval history, motorcycles etc. I don't really collect things, just learn as much about it as I possibly can and spend a huge chunk of time doing so.
I struggle with sarcasm and innuendo, and I don't make facial expressions that match my emotions - I've been told before, while apologizing, that I don't look sorry, but I have literally no idea what a sorry look is. However, my friends get me, and know that I'm an awful liar anyway, so they don't need to worry about my sincerity.
I'm also not affectionate at all, my friends know not to be all huggy and kissy, as it makes me super uncomfortable. I like my personal space, and am very defensive about it.
I can go into sensory overload, but it has to be specific circumstances for it to happen - shopping malls tend to be the perfect storm of "triggers". Loud noises, bright lights, people bumping into me, easy to get lost, etcetera.
I have a very high IQ. I'm aware that doesn't make me 'smart' per se, but it's a thing. My psychologist had me tested when I was 19, it came out at 143. I process information very quickly, and I acquire new information and retain it easily.
I'm very logical - I don't get lost in fantasy land. Even with what I read and films I watch, if I can't believe it I can't enjoy it. So I don't enjoy LOTR, Harry Potter, etc., and people act like I killed their dog when I inform them of this.
I had to learn to have a filter on what I say - and sometimes I slip up. When I was a kid, I used to say all kinds of inappropriate stuff to adults, and as I was undiagnosed until 18, people just thought I was ill-mannered. My psychologist has helped me heaps, and my mum has been great ever since I received a diagnosis.
Not so much any more, but I used to fidget. Specifically, I used to spin things in circles. Just whatever I was holding. I never got an explanation as to why I did this, I just got told it's common in Autistic kids.
I would like to say that life is far better for me now than it was as a child school was literally the worst. In school, people pick on anyone that's different, and Australia seems to have this huge anti-intellectualism culture: I was bullied horribly for my preference of books over people, however, I was suddenly very useful when it came to trivia, or assignments, or anything that required thinking.
I am a female, high functioning autistic with general anxiety and social anxiety. I'm not sure exactly where the anxiety ends and the autism begins. The two issues are a recipe for loneliness.
The majority of the time, most people do not notice my autism. I'm pretty good at faking it. I dropped out of school, but I'm not sure if it's because my anxiety made me unable to cope with my autism or my autism made me unable to cope with my anxiety. Anxiety is not logical, it makes no sense and it's stupid and suffocating. After wasting years of my life buried in online gaming, I got a job. In retail. I learned to feign interest, make and hold eye contact and not completely lose my cool when someone touches me or stands too close to me. I even got to a state where I was able to talk on the phone. That is where the tables turned for me as long as my anxiety was under control, I could blend in with the crowd.
When people push me past my emotional or physical comfort level, I start to revert back, and the autism comes seeping out. I twitch, my leg will bounce, I can't look at people, and if I keep being pushed, I usually end up banging my head on things and trying to get away from the situation by hiding somewhere quiet, cramped and dark.
I don't relate to people's pain. I don't feel sympathy for anyone except my son, and even then it's only for some things. I don't feel badly when horrible things happen to people, like car accidents and cancer. I think I am really good at looking sad, and I'll put my hand on your shoulder and tell you, 'I am here for you', and I will listen to you, but I don't really care. I just do what I think is expected of me.
I get very agitated when plans change. I like to know exactly what is happening, where we are going, how we will get there, who will be there, what will be provided to eat and drink, and if any of those things is not as I expected it's like someone has derailed my entire day and I find it hard to find an alternative or interact with a person I didn't expect to be there because I didn't have my 'small talk' planned out already.
Certain sounds make me want to vomit out my insides and makes it feel like my ears are bleeding. I can't stand touching cotton balls or velour and velvet fabric. I can't sleep without a blanket on me, even on 30C+ nights, I think I need to invest in a weighted blanket.
My hobbies often vary wildly, but they can last a long time and be very intense. In 5 years I went from owning a Betta splenden in a 10 litre tank to a 550 litre full reef system with several thousand dollars worth of equipment and another 20+ fish tanks scattered throughout the house. I dumped all that and now I'm sewing, I have enough fabric to be buried alive underneath and not be found until the smell of my rotting corpse drew the neighbours attention. I've only had that hobby for 2 years. I've progressed a significant amount since I had a child 2 years ago, though it took me a suicide attempt and a lot of help to get through the first year. It has changed who I am as a person and how I relate to other people a lot. It helped me to lose the strict, structured routine that I had to have, and replaced it with a much more relaxed one, and I finally understand love.
Thanks for reading!
We are told that, if you're not confident, you should just "fake it til you make it."
This is great--in theory. In practice, sometimes "faking it" can have extremely real and terrible consequences, which these people found out the hardest of hard ways.