What Does Autism Feel Like?

I was having a deep conversation (via Google Hangouts instant messenger) with a close friend about my Autism. He made a comment that he did not see Autism as a disability, but more as an alternate way of thinking that is not serviced very wall by the modern education system. I agree – partially. . .

Quickly I realized that no matter how hard I tried, there was no way I could accurately explain or convey the parts of my Autism that truly “disable” me. Searching the internet, I quickly found a few articles with other Aspie who had attempted to explain what I currently could not – the negative things that NT’s have a hard time comprehending.

“What does Autism feel like?” In that moment I was completely unable to explain.

The most disabling part of Autism (for me) may be its invisibility and my status as “high functioning”. Everyone expects me to do ok. I am smart, and use my ability to pick up on patterns to get ahead in the world. I am one of those “gifted” Aspies so my Autism must be a gift right?

My good days are amazing but on my worst days my sensory overload wont let me out of bed. Currently I am averaging about three really bad days a month. They hit at random stop my world in its tracks.

People can’t tell when I am having sensory problems. Some days are worse than others and most days I am in at least mild pain at all times. The lights hurt my eyes and head, smells make me gag, small sounds nag at me constantly, I walk into walls, trip over things, and sometimes miss my mouth when I eat.

I miss many things in most conversations. I am awkward, weird, and my intentions are often misunderstood. If someone is not smiling or looking pissed off I can’t read them – unless I know them very well. Normally I have NO clue when I’ve offended someone.

Autism feels like I am out of sync with the world and its people. I am alone in a lot of ways, that may sound sad but honestly I am happiest when I am alone with my own thoughts.

Below are some of the items I found while researching how to better explain Sensory Overload.

 I can take NO credit for anything below.

My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.

Lori Sealy of The Mighty shares – My Answer to the Question ‘What Does Autism Feel Like?’ talking about her sensory processing difficulties.

One Guy’s Opinion: What it feels like to have autism as an adult by by

In general…

  • Before you know you have it, you simply assume that you have an odd personality.
  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.. .

Check out full article here.

Video Simulations to Help You Experience Sensory Overload

 

Carly’s Café – Experience Autism Through Carly’s Eyes

Carly Fleischmann is a nonverbal Autism advocate and YouTube talk show host. She is AMAZING. I strongly recommend you check her out.

Video HERE.

What it’s like to walk down a street when you have autism or an ASD

More great videos on Craig Thomson‘s YouTube channel.

Video HERE.

Autism: Sensory Overload Simulation

Check out the streamofawareness YouTube channel for more.

Video HERE.

Sensory Overload Simulation

More from WeirdGirlCyndi on YouTube.

Video HERE.

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151 thoughts on “What Does Autism Feel Like?”

  1. I checked out this post after I noticed you liked my blog (thanks by the way 🙂 ) and am I ever glad I did! Thank you so much for sharing your experience – years ago I used to work with people on the opposite end of the autistic spectrum; people who couldn’t speak or really communicate in ways that most NTs can understand. I loved my job, and viewed the communication gap as a challenge, though it bothered me a lot because many of my coworkers at the time took the bizarre approach of deciding “well, they can’t speak…so they must not have anything to say.” And would treat these clients as if they were very dumb. It was extremely frustrating, both for myself, and I’m sure to a even greater degree the clients. I ended up having kind of a stress-meltdown after a while and left, though I felt bad about doing so.
    …sorry, got very personal there. My point was, it’s a beautiful thing you’re doing. Anonymous or not, hard to describe or not, your giving voice to people who can’t. You should be very proud, and I know it doesn’t mean much coming from someone you don’t know, but I’m proud of you.

    Liked by 4 people

      1. Thank you, as a parent of a child with autism it is very hard to know what she is thinking or feeling. I understand that she does not think as we expect her to but I am trying to see life as she does. In fact becauise of her I have started a new business of making school uniforms and clothes for children on spectrum as many parents are paying way over the price for things like socks ect and having trouble with school uniforms. I don’t think that is fair

        Liked by 1 person

  2. Hi Anna, thanks for liking my blog, which made me visit your site as well. Great writing and thank you for the information you shared. It certainly helps to hear from a person who has mild autism, and i think you are very gifted and should be proud of yourself. Being from the 80’s, we had no clinical diagnosis or descriptions for people with different needs. People would often tease and laugh because they didn’t understand (though that doesn’t justify their actions either way), and i feel bad for them. Having visited that SPed school, It worries me about the rising number of children born with autism, ADD, Aspergers, etc.

    Again, appreciate your writings.

    Liked by 2 people

  3. So frustrating when your brain-wiring is INVISIBLE to other people, so its OBVIOUSLY NOT A PROBLEM RIGHT? Sigh.

    “But why can’t you just…” and “I can’t see where the problem is” are probably my least favorite phrases in the universe.

    Liked by 2 people

  4. Hello Friend,

    Thank you for your insights. I am very interested in how people and their brains work. I am also an author and one of my characters is high functioning and is a master of details. I think this helps me understand this better.

    Thank you,
    Gary

    Liked by 1 person

  5. I had a teen in my church who was autistic and had asbergers. He was very shy. He and I became good friends. I was not happy with the way the public school provided for his needs. For example, he was suspended his senior year because a girl led him into a trap to take the blame for her devious plot to poison students she didn’t like. This boy had a crush on her and would do anything to please her and get her to like him. No school administrator took into account his poor self image and shyness due to his disablilty. In fact, the administrators called the sheriff and a deputy arrested him AT SCHOOL. He had to spend the the night in jail. I went with him to his trial along with his family. Thank God, they threw out his case and he was exonerated. Lots of prejudice as you stated in your great article against those who have autism and asbergers.

    Liked by 3 people

      1. I noticed the same thing: Some of the worst bullies were teachers and professors, in power. And also, in that same group, some of the most nurturing. In the sciences, some of those great teachers were also on the spectrum. One was so ashamed of it that he had those of us who knew, promise not to mention it even after he was in the grave. He also noticed that the bullies appeared to be jealous (for he was in fact far smarter than his abusers, with many more significant publications). It still saddens me that my teacher went to the grave ashamed of who he was.

        Liked by 1 person

    1. We get taken advantage of so easily.

      When I was 14 I was offered crisps (potato chips) by the lads at the playground in exchange for groping girls at the playground. I was fat and autistic, plus I had no clue about the big wide world.

      Liked by 1 person

        1. Yes, kids with Asperger’s can’t second guess others. Plus, girls nowadays can rope you into a relationship and then accuse you of taking advantage of them. In my local Chippy there’s a girl who’s 17, soon to be 18, who calls me, “Honeybuns!” or “Babes!” and her and her Sisters are like a whole Army of Minions.

          Liked by 1 person

  6. This is so valuable. My child has been having social issues for several years. She hasn’t been diagnosed. Nobody can put a finger on her specific issue. A lot of what she does sounds like this. And you’re right, people don’t get it… even when we’re trying. Thank you for your openness.

    Liked by 1 person

  7. I can’t imagine three knock out days a month. I’m amazed you can stay motivated to continue writing.

    As an educator I’m so happy to see more people share their experiences. It gives a great opportunity for those of us who benefit from a little insight the opportunity to do so.

    Thank you for sharing!

    Liked by 1 person

  8. Thank you for liking my blog and for writing all this awesomeness, when i can actually focus i will return and read things properly but right now i’m on the verge of hyper-manic and feeling angry, stimming fit to bust and trying to distract and divert by the mechanism of old lady tv shows about animals and antiquing and crocheting xmas gifts…my brain is in turmoil yet i’m externally calm… had a text fight with my bipolar friend over him being a dick…i’m pretty sure he was being a dick..will evaluate later and sent my adhd/asd kid to bed early as his stimming was making my jaw clench; but writing this has at least made me smile and i’ll look forward to reading more soon…keep on keeping on and thanks again.

    Liked by 1 person

  9. this is a well-thought out blog and I always wonder if I have the dash of autism but when I read your points on sensory input I know I ma not that. I don’t socialize with people but have often put that down to being a Buddhist ad seeking aloneness. I know I have offended people by not wanting to hang out with them or inviting then around my gaffe and then not understanding why they might dislike me because of it. I always say invite me to anytign and ill say yes but I cant inite myself into things and often wonder where is the fucking invite when I myself do or say nothing. Maybe I am just a writer, still its insightful to read about these who suffer ful spectrum and aareness is a great thing. Thanks

    Liked by 1 person

  10. I don’t have autism. I think though that it might be the Complex PTSD and fibromyalgia that effects me in such a way that I can completely identify with the videos, perhaps to a slightly lesser extent. When I go for walks, I have headphones to block out, well, everything. I do notice everything like the walk down the street. Because I don’t have autism I am able to block somethings out but I’m hyper-sensitive to sound and light and stress. I can only have 1 thing happening when I’m in the car. If someone is talking I can’t have the radio on and I find it harder to concentrate on driving. If there’s a lot of traffic I’ll ask them to keep quiet. However, when I’m alone I always listen to music or podcasts to distract my brain from everything else.

    I feel most comfortable at home, alone. I call my place my cave. I can’t go to parties, lol, because of too many conversations at the same time, which are hard to block out. I see their mouths moving but really can’t separate their words.

    With emotions, and i don’t know if this is similar to autism, I’m mostly flat. when in social situations I simply mirror other people’s feelings so I can understand and relate to them, and seem normal, but as soon as I walk away, I go back to my usual non-emotionally flat self.

    It makes me wonder if CPTSD, fibro, etc somehow alter the brain to a near autistic level or something.

    Like

  11. You have a beautiful mind and write very well.
    This post really spoke to me.
    I was in my early twenties before I got a label and I was always that awkward quirky kid that people liked but no one understood. I was diagnosed Aspie and I keep the label, I find it helps people understand IF I chose to share (they’ll call me a liar to my face if I claim Autism, I’m to smart to have that).
    Thank you for putting forth the effort to articulate so much of our world; the social assimilation, sensory overload, inverted ability on simple and complex tasks..
    I am enjoying your blog, every time I open a new post I receive several paragraphs of comfort realizing again that their are other minds like mine.
    Thank You.

    Liked by 1 person

  12. Oh my gosh, the video with what it’s like to walk down the street with sensory overload is EXACTLY what I experience! My sensory problems are a bit different from autism because they come from a chronic physical illness, but the way the sunlight and noise are overpowering and any discernible object on the ground gets stared at, that’s exactly what happens. It makes it very hard to walk straight or cross the street!

    Liked by 1 person

    1. It’s not always a bad thing, Phoenix – occasionally being overpowered by an object on the ground or a brick in a wall. I have a thought experiment co-authored paper coming out in Nature because I was literally overpowered by a pattern in crumbling bricks that became an instant analogy to 12 dimensional space time (a possible new offshoot of M-Brane theory), and pixilation in the universe. Sometimes (and especially when amazing new pictures come in from space-probes), information overload can be more exciting than distressing. It may be a reason that so many people on the spectrum go into art, science, and even writing. Or the various Silicon Valleys around the world. One of my mentors, who really pushed the envelope between science and poetry, once said, “Perhaps a bit of the aspergers is necessary to push the envelope of scientific advance… to see what others do not see”. As in the beauty that is within a single proton in a grain of sand in a brick somewhere off Broadway. Sometimes a bad thing can be turned into something good. It does not always have to be bad. We are all different; but in my particular case, I would not trade what I can see of the universe to be more socially adept.

      Liked by 2 people

      1. That is very awesome that you were inspired to write a paper on 12-dimensional space-time! 🙂 I agree that seeing the world differently can be a very positive thing, although sometimes it really is a struggle.

        Liked by 1 person

        1. I really do not think I would trade the struggle for being able to see an anthology of the universe in a leaf in the palm of your hand. Or in a crumbling brick (the first glimpse into ramifications of 12 dimensional space-time – a thought experiment with no math – appears in the march 9, 2017 issue of Nature, with co-author George Zebrowski). My son, whose main interest in pre-med is the human brain and nervous system, recently said he wished he could walk around seeing the world from my perspective – but only for a little while, never for more than a couple of hours.

          Liked by 1 person

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