Living With Asperger's Syndrome--inside my head.

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Until my daughter was diagnosed with Asperger's Syndrome in 2008, I had no idea that we had substantial brain function issues. In fact, it was the rest of the world that had problems--we were fine!

Nothing has really changed since the diagnosis--except my perspective, which has been spun around 180 degrees. I'm here to talk abut how I have been able to make a good life for myself and my family with my Asperger's brain--without knowing what I was dealing with inside my head.

At left: Earth Mandala. If you want to see more of my work, please visit my website: Art by Jane Walker. I also have a variety of how-to pages, including how to make recycled paper ball ornaments, how to do 3-D photography, and how to make glass doll eyes!

Uh oh, too much stress! 

I'm having symptoms!

I suddenly need to have the final number I write in Sudoku puzzles to be the #9. Irrational! I also keep rolling up my sleeves even though it is too cool for that. And I keep putting my hair in a pony tail and then taking it out again.

I currently (Sept. 26) have a fabric design entered in a contest. I spent about 50 hours over 3 days creating it, and I had to make huge compromises on the design due to not having enough time to do what I wanted to. It is in 7th place (out of 70) in the first round, so I hope to make it to the final (top 15 will be in it).

This sort of thing is very stressful for me!

At right is a detail of my contest submission--the contest requirement was that the design include spoons and flowers.

Doing Well this Summer! 

Even though I'm very busy

I just realized that I'm managing very well this summer. I'm working hard at my business venture of creating designs to sell using online print-on-demand services, and I am managing to juggle the creativity and the promotion without too many mental meltdowns! The house is a mess and I barely even notice--it doesn't bother me enough to make me stop working to clean it up very often, which is astounding. I'm very focused on my work, but not to the point of obsessing. I'm just really enjoying it. Granted, it would be nice if it were to begin generating income soon!

My mind is clear, I am doing what needs to be done and, and I'm not obsessing about what is not getting accomplished. I must be dong something right! Probably several things. Such as eating right, sleeping--or at least resting--on a regular schedule, and following my exercise routines.

I do have to stop and work up my daughter's school curriculum for the coming school year (we homeschool). Tomorrow, I will stop tomorrow. Really.

Living with Asperger's Rule #1 

Knowing my limits--The only thing I control is myself.

When I was a child I thought everyone else was weird, and that they should conform to my view of the universe. These days I would rather be happy than right...

Step #1 in living well with Asperger's has been to learn what overwhelms me. This has taken years and is a continuing process.

Unexpected physical contact is like being touched with a live wire. Not quite literally--it's hard to explain. There is usually little or no actual pain, but there is the overwhelming focus of attention and the feeling of a burst of static and blankness in my brain.
I have found in the past that people don't tend to respect the simple "I don't like being touched" explanation--some seem to think they should touch me more so I will get used to it...
Since we learned about Asperger's Syndrome, people who know are much more respectful of my need not to be touched.

I hate noise--I don't even listen to music anymore.
The sounds of vacuums, power tools, and appliances are irritating, but by the time I was a teenager, I had learned to tolerate most of them. Even so, when noises stop, I physically sag with relief--even if I had not consciously noticed them when they were occurring.
The background whine (carrier wave?) of TVs and radios/CD players rarely bothers me anymore, but that may have more to do with my hearing not being as good as it once was than that the sound would be less irritating if I could hear it.
I normally avoid situations where I would be subjected to much noise for any length of time, and if I start to feel twitchy when I am in such a situation, I move to a quieter spot or even leave.

Messy or Tidy? I recently read that people with Asperger's are usually at one extreme or the other. I'm tidy, my daughter is messy! She is required to help me keep the shared areas tidy (my husband, too), but her room is how she wants it (and my husband's "spaces" are strictly his business).
Our household became much more pleasant when I learned to warn my family that the mess was getting to me. The interesting thing is that in realizing my need for tidiness and making others aware of how upsetting messiness is to me, I have been able to be less obsessive about it. When something isn't the way I want it, I can tell myself that it's still ok, that the person who did it that way has the right to do so. ---Even so, Lego projects are banned from the dining table!---

A Bad Day today... 

Is it Asperger's? I don't even know

I don't know anything today. I can't focus, can't think, can't remember. Anything and everything makes me want to scream, or cry, or bang my head against a wall. Just trying to write this my eyes keep jerking away from the screen and I can't breathe.

Rule #2 No Obsessions Allowed 

From my reading, it seems that if one has Asperger's one has obsessions. I used to become obsessed with one thing or another. As a child I was obsessive-compulsive in some of my behaviors, and as a teen I was certainly obsessed with "The Lord of the Rings" and "Star Wars", just as my daughter is with "Speed Racer".

When I began to question my behaviors and to try to improve my family life after my daughter was born, I realized that my obsessive behavior was causing my manic-depressive mood swings. I found that if I stopped myself from becoming so enamored of a subject that I became euphoric, then I did not suffer the crushing depression, either. I still tend to experience mild depression, but nothing like what I had when I was obsessed with something.

The only negative side to controlling myself is that life overall seems a little dull, now. I no longer have bursts of energy that allow me to go,go, go and get major projects done with ease. I have trouble gauging my moods now. I spent most of my life at one extreme or the other, and the middle ground is a strange place to be.

I'm not tempted to "let myself go" and become obsessed. It is not worth the cost.

I do NOT have a Logical Brain! 

Many people with Asperger's are good at math and science, and are very logic oriented. I'm an artist! I failed Algebra 2 (my teacher gave a a passing grade that I had not earned). I never got beyond high school biology. I was 27 before I really understood the concept of analyzing anything.

I discovered Sudoku puzzles about a year ago and had to read "Sudoku for Dummies" before I could do any but the most simple ones. Now I can do almost any of them, but only if I do some every day. If I stop for a while, I have to wake up that part of my brain again by doing simple ones and working my way back up to hard ones--it takes about a week to get back in "shape".

Running my online business is incredibly frustrating sometimes because I do not understand computer and internet stuff and can't seem to learn much. Even learning to do these Squidoo lenses was hard and I needed help. A couple days ago I tried to build a Facebook business page; I managed to create an account and then got stuck. Even the step-by-step instructions are gibberish to me.
NOTE: I have since managed to make a FaceBook business page and accidentally made a personal page, too, while trying to fill in the business page info! Two pages are not allowed by FaceBook and should not be possible to do accidentally...? I'm leaving both there until FaceBook tells me what to do about them! I don't know what to do about removing one or the other. The business page doesn't seem very useful.

I have a fairly high IQ, but sometimes it only serves to make me painfully aware of my weaknesses!

Why Does My Brain Not Work Sometimes? 

I really don't understand why I can do Sudoku puzzles with ease and find Mastermind mind-numbingly simple, and then have a week or more when even simple Sudokus take me an hour to do, and Mastermind will frustrate me to tears. I can FEEL my brain not working. I can feel my brain failing to hold onto the information, failing to follow the steps that I know I knew before.

Wow--something has just stopped working in my brain ... 

I can't do Sudoku puzzles that I already solved!

This is too weird! I completed a book of sudoku puzzles and then erased some to do again (rather than buying a new book), but I can't do them! I get to a certain point and there is no next step. I check the answers in the back and I have made no mistakes, but I can't find any next move! Twilight Zone! The universe has shifted and I didn't shift with it! This sort of thing is VERY disturbing to me. I can only suppose that I have forgotten one of the rules (the logic often escapes me, so I rely on memorizing the steps). The problem with that is I can't figure out what it is that I don't know. What is wrong with this puzzle? What am I not seeing?

WHOO HOO! Two of my siblings tried to solve it and got stuck, too! So it's not just me! Maybe I made a mistake the first time or else put the numbers in in a different order so that it didn't come to this impasse.

Reader Feedback 

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  • Reply
    ArtbyJaneWalker ArtbyJaneWalker Aug 13, 2009 @ 9:06 pm | in reply to Playscale Poser
    to Playscale Poser regarding IQ--"...when it doesn't show up where it might be expected." Yes, we have to always keep that in mind with our daughter (age 16). She is so smart that it's a shock when she comes up against something that just stops her cold. Her mind hits a wall and she can't even speak to let us know she is having a problem. She is as articulate as most people most of the time, but when she tries to deal with something that engages a part of her brain that doesn't work well she can't even tell us that something is wrong.

    I experience the same thing sometimes and it is very frustrating. Alas, I'm the adult who has to set a good example of how to cope and behave in this sort of crisis, so I don't get the luxury of growing and stomping, or bursting into tears. I have to shift my mouth into a smile and say, "Oh no, my brain is glitching again!"
  • Reply
    ArtbyJaneWalker ArtbyJaneWalker Aug 13, 2009 @ 8:41 pm | in reply to Playscale Poser
    Wow, thanks!
  • Reply
    Playscale Poser Playscale Poser Aug 12, 2009 @ 12:12 am
    Your Sudoku HAS a solution, but it is poorly constructed. The best tactic I could find was to make TWO copies of what you have so far. Fill in all of the spaces with their possible numbers. The bottom row should be 358|1|29|7|58|4|6|29|35, trust me.

    The upper-lefthand corner will read 9|25|25. On one copy, solve as if it were 9|5|2. On the other, 9|2|5. You only have two choices. One of them solves the puzzle. Not elegant, but it works.
  • Reply
    Playscale Poser Playscale Poser Aug 11, 2009 @ 10:48 pm
    I am an Aspie with an IQ in the top 1%. I have the logic to do Sudoku, but I can't formulate a chess strategy to save my life. Even my checker skills, while somewhat clever, are no where near the 1%-level. It shows up in other areas, but it's awkward when it doesn't show up where it might be expected.
  • Reply
    Spook Spook Jul 20, 2009 @ 2:49 am
    Well done with everything you do and keep it up.
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Asperger's books at Amazon 

These are the books I have read...

I've read at least parts of all these books. Anything by Tony Attwood is a must-read, and OASIS is a great book and website. Best of luck to everyone who wants or needs to educate themselves about this subject.

The OASIS Guide to Asperger Syndrome: Completely Revised and Updated: Advice, Support, Insight, and Inspiration

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