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Autism - Things I Wish Everyone Knew About Me

March 29th, 2010 at 07:00 pm

I saw something like this on an autism forum for adults once. It was basically a bunch of us talking about things we wish people understood about us. Not on a deep level but just to better understand some of the behavior that might strike them as odd.

1. When you smack gum, slurp soup, or otherwise make loud noises with your mouth, it's gross, but it also is a sound that scares and upsets me and NO, I CAN NOT "just ignore it". Sometimes, it bothers me so much that I want to just smack my head against a wall or bite my arm until it stops. And then I spend 30-60 minutes being afraid you'll do it again.

2. I do not like fancy clothes, they seem pointless and illogical to me, so that is why I wear the same 5 outfits to work in rotation, usually on the same day each week. They are solid colors because that makes more sense to me.

3. Patterns make me feel comfortable. If something goes out of pattern, I might get scared and feel like crying or yelling. It's not just being stubborn or wanting things MY WAY. When something that usually is suddenly isn't (or vice versa) my whole world can get thrown out of whack for a while.

4. I do not like being near or talking to people I do not know. Over the years I have learned how to be socially normal however, there are certain times when I am so afraid of what a stranger might do (mouth noises, weird smells, spill over into my seat etc.) that I will throw a tantrum out of sheer terror. This happened in Florida when due to a check in malfunction with SouthWest, my fiance & I got put in the last group to board. I lost it. I threw a toddler like tantrum because I was afraid...nay...horrified that I might have to sit next to a fat, smelly, slurpy stranger for 4 hours while my fiance sat 8 rows away. We ended up paying extra money to get into business class so I could be amongst the first to board so it worked out in the end.

5. I am not really capable of empathy. I never have been and I never will be. This comes off as mean, heartless, b!thcy... I've heard every nasty name in the book. Sometimes I try to fake it because I know how I am supposed to react to certain things. But I can not always fake empathy. Sometimes I am able to... not because I feel but because I understand how I am supposed to react in certain situations. (ie. my friend says they feel sick, I don't care per se, but I know they are my friend and thus because I like them, I don't want them to be sick so I am sorry they are sick. However if a stranger is sick, I might not say anything at all).

6. Despite my lack of empathy, I am capable of love and I am capable of friendship. In fact, I am a very loyal lover and friend. My fiance is a wonderful man who I would do anything for and I treat him very well and he treats me very well.

7. Having no empathy, I will often be brutally honest and things like political correctness or trying to walk in someone else's shoes makes no sense to me. In fact, "trying to walk in their shoes" makes me wonder why I would wear their shoes or if their shoes would literally fit me. I wish people wouldn't use phrases like that. Sometimes, this makes me come across as very mean but I don't mean to be. I am just being honest. Some people like this about me. Friends come to me a lot for advice because they know I will be honest.

8. I have never been able to relate to people my own age. When I was in high school, I would interview the other kids as if to learn about them. And then I would go off alone and do strange things like hang out at at the party supply store and imagine themes for rooms and events. I like themes. I make up themed music lists. I have theme movie and dinner nights. Themes are patterns and patterns are safe.

9. Because I am hypersensitive to certain noises, I need to wear earplugs almost all of the time. This means you have to be careful approaching me because I can't hear you. I can only hear you if you are talking face to face within a foot or two or on the phone.

10. I hate the phone. In all the years fiance and I have been together, we only text. Text makes more sense. It is clear cut and logical. No guessing. We only call in emergencies.

11. There are certain topics that mesmerize me and if I start thinking or talking about them, I won't stop. I don't even realize it usually. I once spent 12 hours rearranging music on my itunes and to me, it felt like 10 minutes.

12. No, really, I can't just ignore it. I stress this because the noise issue has caused me so many problems in my life. I had to have my desk moved recently at work because I was seated next to a chronic throat clearer and across from a cereal cruncher and it got to the point where I was hurting myself because it would comfort me. When people would tell me to "ignore it" it would make me angry too. Don't you think I would if I could?

13. I like animals more than most people. They make more sense to me. Watching people for me is like watching an aquarium full of fish from the outside. I observe them and I understand their behavior very well. However I have no idea how to be like them. Nor do I really care to be.

14. Not all autistics are non verbal 8 year olds. I was not officially diagnosed until I was in my early 30s. But I've been this way my entire life (my mom tells me I ran 5 box fans in my bedroom to block out noise when I was 7, and that I'd bite my arm or throw things if I could hear people talking in the next room when I wanted quiet). At the time, no doctors diagnosed me because only more severe cases tended to be noticed then.

15. As an autistic that understands many things about the condition, I try to learn more about it and find ways to deal with certain aspects of it. I am capable of holding down a good job. I am capable of being in a relationship. I am very good with focusing on goals.

13 Responses to “Autism - Things I Wish Everyone Knew About Me”

  1. Waterfall Says:

    Thank you for sharing these points. I never knew it was so difficult for someone who was autistic.
    One of my favorite shows is "Doc Martin". I was told the character has Asperger's Syndrome. They even refer to it on the show.
    I also found out the character, Mr. Darcy on Pride & Prejudice has it. I know they are fictional characters, but it helps to understand them when you know.

  2. gamecock43 Says:

    Wow. Thank you. I appreciate the input. Your preferences make sense to me. It sounds like you have found a good fit for yourself in the world.

  3. creditcardfree Says:

    Thank you for sharing! Because I have had anxiety issues in the past, I can relate a little to your sensitivity with noises. I remember being very aware of all the beeping at the checkout stands and it making me nervous and wanting to leave.

  4. Ima saver Says:

    That was very interesting. Thank you for explaining.

  5. Broken Arrow Says:

    Very interesting indeed. Thanks for sharing.

  6. NJDebbie Says:

    Thanks for sharing. I don't know if you've read the book, "Look me in the eyes" by John Elder Robison (not Robinson). It's a memoir of a man who was diagnosed with autism as an adult. I recognized a lot of those points you made by reading this book. If you haven't read it yet, I think you'll like it.

  7. patientsaver Says:

    This is really fascinating and would make wonderful material for a book you could write about what it's like being autistic.

  8. MonkeyMama Says:

    Yes, interesting. There is actually a large cluster of autism/aspergers in the city I am from. They've narrowed it down to more genetic than environmental causes. But, being from Silicon Valley there are a lot of engineer types. Which is the theory - more autistic types gravitate towards the jobs there. My MIL teaches and has had a ton of kids with aspergers in her classroom. (Having children, I read up a lot on the subject since so many friends skipped vaccinations due to fear that was the cause of autism).

    Anyway, I am embarassed to say, after reading your post, that I really didn't know anything about autism (but for the research about what triggers autism). Very eye opening.

  9. Analise Says:

    Before retiring as an elementary school principal (Silicon Valley), we had many autistic children at my school and it was a positive experience when we prepared for it. I had to provide training to help my staff better understand the needs of autistic children. I wish I could have had input from someone autistic because it was always from a clinical perspective (e.g., the school psychologist), not directly from someone autistic. Thanks for sharing your experience.

  10. blackdiamond Says:

    Thank you all for reading. I will have to look into some of those books and shows.

  11. elisabeth Says:

    I'd like to ask a question about your empathy information. If you don't have empathy for others and you really don't care, do you still expect to get empathy for yourself and your issues? I am not trying to be offensive, I am curious based on what you have said.

  12. blackdiamond Says:

    Elisabeth,

    That is a good question. It's hard to answer but I'll try.

    Being offended by the question would never occur to me. I am hard to offend because I do not really attach emotion to words the way a lot of people do. Generally, everything is taken as it appears. Even if the person who says it doesn't mean it the way it appears.

    I do not expect empathy, I don't really think about it(unless someone asks I guess, or if I'm thinking about the subject in general as it relates to this).

    I generally am pretty solitary and don't notice or care what strangers think, but as far as my friends and my fiance go, I don't think I've ever expected empathy. I think I expect a certain level of courtesy (be nice, be quiet, have manners) and I try to extend that courtesy to other people (I'm quiet, I am not mean to people, etc.) because it's the right thing to do.

    Sometimes I do upset my fiance by not "getting" where he is coming from. Sometimes this makes me sad. We talk about it and come to agreements. I'm not void of feeling even though it comes off that way sometimes.

    But no, I don't expect people to feel how I am feeling or care that much. Which makes me wonder why I posted this. And I think I did not post this looking for empathy but I did post it to put it out there because sometimes, I think it helps spread awareness in general. I want people to know that there are adults with autism who face challenges (noise issues etc) but can still function in society like any other adult. It is good to learn.


  13. debtfreeme Says:

    This was fasccinating and I am greatful that you allowed us into your world a bit and that it will help us understand our interactions with you.

    Welcome!

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