The world is a tough place. And it can be even tougher for those of us who are wired differently in a world that can seem like it has a set of rules that everyone else instinctively knows. With more people being diagnosed every day, chances are you know and love someone affected by autism who knows that feeling – even if they’ve never said it out loud.
Which makes these 12+ comments super relevant to all of us.
#15. Taking a quick breather.
“When we’re hanging out and you notice that I’ve become a little bit withdrawn, be it taking a quick smoke break or just scrolling through my phone, I’m not mad nor are you annoying me. After so much stimulation, my mind literally needs a “rest” period that allows me to mentally cool down and take a quick breather.
I don’t know why this is, it isn’t something I like nor is it something I consciously do, it just happens and when it does, asking me if I’m mad or whats my problem is only going to frustrate me because you’re just adding on to the stimulation.
Also, don’t touch/disrespect our shit. Major no-no for an autistic.”
#14. I literally teared up.
“I literally teared up the other day when I realized that I can cook with gloves on. I never have to touch raw meat or oil or flour again. I accidentally got raw bread dough on my hands one day years and years ago and it still makes my skin crawl to think about it.”
#13. Just say something.
“If I’m acting weird, just say something. I’m not trying to be weird, I literally don’t know the proper rules for that situation.”
#12. We are people.
“Autism is a spectrum. It may be very obvious, the rocking nonspeaking person, it may also be someone you never expected. I didn’t know I had autism until I was almost 22. Also, just because this one autistic person annoyed you, doesn’t mean everyone who is autistic will annoy you. It’s very hurtful to say that.
We are like sociopaths in reverse. Sociopaths now how to act properly, can read bodylanguage, but just don’t care about your feeling. Auties do care. They just may not know how you feel and if they do, they might react cold or weird or even laugh because they feel uncomfortable. They still do have empathy though. Some even have a lot more.
We have communication issues because our brains are wired differently and because we are in the minority. Information just trickles in differently. Often things are louder, brighter and more intense. We also have to work really hard to understand you and react properly.
Often ‘treating’ autism means treating the symptoms. You learn how to make eyecontacf, you constantly pay attention, you expose yourself to uncomfortable situations. The more you manage to mask your autism, the better people think you are doing. However, like any person working to hard, this can lead to a burnout. And like any burnout, our skills are then reduced. From the outside we might then get a lot of shit because we suddenly stop making eyecontact or talking normally. Girls with autism mask more often than boys, and therefor tend to have higher rates of anxiety and depression. Suicide rates are also much higher among autistic people.
Talking about girls, there are a lot less girls diagnosed than boys and they are also diagnosed later. Most knowledge about autism is based on boys. Boys also tend to be more disruptive while girls are more likely to turn silent (and depressed). I am one of those girls – I didn’t get diagnosed until I was downright suicidal at 21.
Autism is not all bad. It’s different. Autism comes with a different way of processing information, which makes us very good at details. We also tend to look at problems from a different angle, making us good people to give solutions. Many autistic people are very artistic, many have special interests where they are extremely focused on and thus know a lot about. If special interest and talents align, autism brings out the genius. On top of this we are very loyal and tend to dislike lies. And many of us have a knack with animals – who we tend to understand better.
I think the most important thing is that we are people. People who are autistic but also a lot more. There are as many autistic types as there are autistic people. None of us would be is without the autism tho. And although we get the struggles, obviously, it can be very hurtful to do autism research into eradicating autism instead of helping us. As if we are bad for existing. My greatest hope is then that more research will be focused on how to live with autism instead of how to live without.”
#11. How to ask for help.
“One serious issue I had growing up was learning how to ask for help or communicate my needs. Growing up I had counselors give lessons on how to ask for things or communicate my feelings verbally, but often with very broad-sweeping and simplified solutions. But every single scenario is wildly different in more ways than other people might understand. And maybe this is just how my mind works, but whenever I need to ask for something (like, say, where the bathroom is), it feels like a completely different situation each time with a number of factors, such as environment (school? restaurant? park? museum?), how that affects what’s appropriate to say to who, who the authority figure is and how well they can help me, how comfortable I am with the people in the environment or how well I know them, whether or not people look busy, if I know where I am, and so on. After awhile it just became miles easier to keep my problems to myself and sort them out later.
Another thing is that my brain tends to process things very slowly. When a teacher or other adult asks me a question, often times I have to take some time to dissect the question and what it means, think about my response, and once I know what my response is and what I want to communicate, I have to figure out how to put it into words (this is usually the trickiest part). I’ve had so many teachers over the years who are very fast-paced and have just come to expect to ask something and get a response immediately. Most of them weren’t nasty about it or trying to be, I think they were just very unused to my 10-20 second response time. But they would often (possibly unknowingly) pressure me to respond quickly, pushing me with “Well?”s and “Hmm?”s, asking follow-up questions (which just resets my thought process and takes longer), and dismissing me as not listening or giving the silent treatment. This kind of caused a psychological response in me where I became hyper-aware of how long it takes me to respond to something, to the point where if I feel I’m taking too long, I reflexively try to power out a response quicker, which just causes my mind to go blank, and I become frustrated. The few times I’ve had teachers/professors recognize this and tell me “It’s okay, take your time,” I could have cried and hugged them.
Also, I think this might be changing, but I grew up at a time where something like 7-10x as many boys were diagnosed with autism/asperger’s than girls. I’ve heard it’s to do with the fact that the symptoms manifest differently between the sexes and methods for diagnosing autism were more male-centric, but I wouldn’t be surprised if there was a societal aspect to it. Like the symptoms of autism fell less in line with how a boy is “supposed” to act than with girls.”
#10. Trial and error.
“Ever hear of the game called Mao?
It’s very similar to Uno, but it has rules you can’t know about. The only rule that you can explain to others is this one. Every time you break a rule you get another card. It’s up to you to figure out the rules, by trial and error again and again. Plus, each person introducing their group to Mao may have their own version of the rules, as everything is made up by the one who knows how to play the game.
That was the entirety of my childhood. Everyone had advanced knowledge of a strict set of rules that they were able to follow at all times. They had different sets of rules that they could follow, tailor-made to the relationships between their teachers, parents, friends, strangers, and so on. No one told me any rules. Through trial and error, I had to learn them as if they should have been on flashcards, and be aware of them at all times, because if I screw up, someone gets angry. By now I’ve been able to keep a good grasp of the rules to appear normal but sometimes I still feel inhuman. I allow some of my weird immaturity out to a select few who understand.
EDIT: I’m surprised at the traction this is getting and I appreciate every one of your responses. If this resonates with you and you can understand the frustration, give people on the spectrum the benefit of the doubt when they get abrasive. That and understanding that we only naturally comprehend your words taken literally will go extremely far in helping.”
#9. A fear of messing up.
“That it comes with other issues such as social anxiety as I kind of fear messing up a social interaction. I work best with a dedicated role where I do a specific duty if it involves interacting with other people.”
#8. Not the exception.
“It rarely exists on it’s own. The risk of comorbid psychiatric illnesses is very high. I have autism and have also had severe OCD since childhood, suffer frequent depressive episodes, and nearly died from anorexia.
Comorbid mental illness in people with autism is the norm, not the exception.”
#7. Everyone except me.
“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.”
#6. It doesn’t define you.
“That it doesn’t define you as a person. That it doesn’t mean you don’t enjoy spending time with other people. That autistic people can feel and understand emotions.
Also, the weird misconception that all people on the spectrum understand each other and get along well. I know many autistic people through groups I’ve been sent to through growing up and resources that are available to me as an adult. There are plenty of them that I absolutely cannot stand and very few I would consider friends. Most of my friends are non ASD people who don’t know or care that I have it.”
#5. Very hard to emulate.
“I know how I act sometimes, I know how I talk always in that same monotone voice, I know in a conversation I seem to talk more at you that with you. I don’t know any other way though. Talking to other people with the same condition is hard for me because I see the same mistakes I make everyday in the person I’m talking to. I’m trying to improve but it’s a slow process. Weirdly friends have remarked that when I’ve been drinking I enter a state where I don’t act drunk but rather act like a normal person.
Edit: A few people have asked if I recognise these things about myself why don’t I change them. I have been trying my entire life but some things are easier than others. Maintaining eye contact for one whilst incredibly uncomfortable for me is merely a case of looking someone in the eye I got that one solved years ago. Knowing how to make conversation or adding tone into my voice though are 2 very organic things that don’t have set rules making them very hard to emulate.”
#4. I won’t get it.
“If you’re upset with me don’t be subtle. Don’t drop hints. I will not read between the lines. Don’t be vague. Don’t lie.
I won’t get it. If you say everything is fine, I’ll take you at your word. Just TELL ME if you want me to do or not do something.”
#3. He needs that time.
“Husband is autistic (Asperger’s, though I don’t know if that distinction is valid anymore). He always wishes people would be more patient of his learning style, especially at work. He needs to ask questions more than once and if a new scenario arises, he usually needs some guidance to get through it. But once he understands a task or procedure, he’s golden. He usually ends up the go to guy for really complex technical things, especially when it’s customer support (IT) related because he can keep his composure better than a lot of the people he works with. He just needs that time in the beginning.”
#2. I’d just forgotten.
“Don’t talk to me as if I’m a child. I was doing a course a few months ago, and I said something in response to what the teacher had said. She ended up annoyed with me about what I said, and even though I tried to explain what I had meant she still talked to me as if I were a child. Even when I gave up trying to explain and said I understood, she didn’t shut up.
Also, I’d forgotten to put on the form that I’m autistic, so they didn’t know for a couple of days. When they found out, she sat me down and told me how I shouldn’t be ashamed of being autistic. I think she was a bit surprised when I told her I’d just forgotten, and wasn’t ashamed in the slightest.”
#1. It isn’t funny.
“That sensory processing disorder isn’t funny. That if you rub that beer coozie on my arm, I’ll keep thinking of it and feeling distraught for at least a couple hours.”