Who I Am

I'm taking part in some kind of series called Believe it or Not You Rock! offered at our local independent living center. Lately I've been trying to take advantage of more of these activities to gain more skills outside the computer realm.

For the first assignment we are supposed to answer the question, "Who do I claim to be?"

It's a question I've asked over and over in my head, Who are you MJI? I could think about being a human being, my religion, age, my gender, my accomplishments and my autism. All those may be pretty good answers but they still don't quite define who I am. They tell what I am.

So who am I really? I am a writer. It is not just a hobby for me. It's a way of thinking. Being a writer affects the way I perceive things. Any new thing I learn can be used in something I write down the line. I've always been curious about the world around me. I remember vaguely when I learned to ask who, what, when, why and how?

"Why" turned out to be one of my favorites. I found if I kept asking why I could learn lots of things. Asked too much eventually I'd get, "I don't know" for an answer. This frustrated me as a kid. I'd ask people why they didn't know and they would just keep answering with the same question... Going in a circle like that didn't give me what I wanted to know.

How does all this tie into writing? In order to write, one has to be able to have a good grasp and understand their ideas. The more I take in, the more tools I have to build things in my head.

I think like a writer. I am almost constantly lost in thought about something, speaking softly in my head as if I am giving a speech. I edit and revise scenes in my head. If I get the chance, I write them down. Most of the time the essays I think in my head never get written. They stay locked in my head ready to be released when a thought triggers them.

I could also say I am a detailed thinker. Obviously I wouldn't have chosen to name my blog this way if I wasn't focused on details. To me it comes natural. I glance at a wall and I may notice a brightly colored butterfly wing left from a butterfly who fluttered into a building. How did the butterfly get there? I don't know. It could be simple or it could be complex. As a writer I have the freedom to make a story up if I want to.

Flash back to a time when I was looking at the back of a truck with a trailer. It was covered in dust and dirt. Someone had smeared it clean with a smiley face and "Have a nice day."
As a writer and a detailed thinker, I notice this little detail. My mind plays it in my head like a movie. The truck unloads its stuff and a guy later writes the message, likely smiles and speaks to the driver, "Have a nice day."

Another day I noticed a little toad climbing around a moving car in the city. How it got there I don't know, but it sure was fun imagining the toad was on an adventure of some sort. If I wanted to develop that further I can.

I have my imagination and it's my best tool. With it I can go anywhere. It is how I get by from day to day. My imagination helps me understand people. Each person I interact with becomes their own character. If they do something funny I sometimes remark, "Keep it up and you will be writing material."

If I were to go back in time, ever since I was about 5 or 6 I've been using my imagination and writing stories in my head. I continue to this day doing what I always did, imagining and writing. Some day I hope to write more than just a hobby.

What's wrong with this world?...Kids book teaching about mommy's new and improved look.

I just found this Jewel off of Newsweek today. Seriously, I wish we didn't have to live in this kind of world where people aren't happy to be who they and rather than seek ways to improve their character, they try to find easy solutions. Years ago it was The Swan... Now it's some kids book written by a plastic surgeon to explain why mom is getting "prettier" and "New and improved."

I find this book disturbing to say the least. If I was a kid and my mom handed me this, I'd be sad... It would be like a slap in the face, because after all we adults try to tell kids to be happy with themselves and have high self esteem for who they are. We try to encourage children to not judge people by looks alone... We teach them to get along with others, even ones who are different. After all everyone is unique. Being unique and being ones self is a valuable thing.

At least that's what I thought... Maybe I was wrong along. After all I am different. I think differently. Even so, I still can tell this book is a direct hypocrisy...

Forget all the stuff I mentioned above. This is the new generation... A shallow one at that; Superficial. Is there any hope for humanity?

Gahrrrrrrr! Sometimes I just want to gag and bang my head up against a wall really hard. What is this world coming to?...

Thinking of taking a break from AS

I don't know when or how long. I am coming to a point I think I need to take a break from the Autism Speaks online web discussion forum. It has nothing to do with any members on there or the battleground that the forum becomes. ( I do have to admit I find it a bit of a let down that people can't put aside differences and work towards a common goal). That common goal should be improving the mainstream's attitudes towards autism. Only then will things start falling into place. Unfortunately not many people seem to be truly aware of this. They find it better to defend their opinion against someone else's opinion than to see the boarder perspective.

Arguing with opinion is like trying to drive a car without wheels; you aren't going anywhere, even if you have a full tank of gas.

Wait. I'm autistic. I shouldn't be seeing the forest, but perhaps I've been wrong all along. It seems massive tree blindness isn't just an autistic thing.

I need to step back and do more things I enjoy for myself. It is fun helping people, but I can't do it on my own. I may check my messages for a few days before going off.

In the mean time I created a thread in hopes maybe both sides can find some common ground.

Hopefully it will go to plan and not turn into another war zone which doesn't help anyone. Now it's time to make a mad dash before the arrows start flying and bombs rain down...

It would be great if people could let go...enjoy, and live again.

This was a pm I sent to a parent on a forum. This parent was complaining and wishing he/she had spent more time googling and finding out information about vaccines before giving one to his/her child. This person even called him/herself an idiot and decided to take the blame for the child’s autism. This saddens me, because I don’t like people beating themselves up for things they either had no control or knew no better. It’s too easy to fall into self pity traps. Being human I’ve hosted such parties many times, and I’ll tell you I left feeling worse than when I came.

Either way I honestly feel that parents who share this viewpoint are being way too hard on themselves. What is in "" and italic is their quote copied from part of a forum post.

"The guilt I carry will never go away, and no rally, website, or scientific study will ever change that."

You have the choice to keep digging down in the mud feeling guilty and sad. That's your right. But it is a miserable feeling to live with isn't it? I know that sucks having to carry such a huge burden.

There was a time my dad was about to blame himself for the same thing, but as his daughter I'm glad he let go and cheered up. I enjoyed my dad being more positive. I honestly believe it helped our relationship.

I know I did not choose to be autistic, nor did my parents. It just happened. Rather than wonder why I couldn't look into a crystal ball to make my decision on what life to live, I decided to just let go and take my life a day at a time. I used to believe things happen for a reason, but then I wised up and realized, things just happen.

You may not have to be religious, but I believe these things that happen, both good and bad, are there to help shape our character. They may seem unfair at times. We can choose to use them to make ourselves stronger or we can let them weaken and defeat us.

That is each person's decision. Regardless of whether or not the shot triggered your kid's autism you don't need to be so hard on yourself. Let other things in your life do that for you. There's enough "crap" out in the world to deal with. Dwelling on negative past things are a real drag.

And to be honest I've heard convincing evidence from both sides, for and against shots being the "cause". Right now I decided to settle on "I don't know." as my answer about vaccines and the "cause" of autism. I honestly believe autism is not from just one cause. It is a combination of things. Try this exercise:

Draw a flower about 10-20 times. Unless you're a copy machine, you're not going to get every flower exactly the same. That is how the human brain is. There isn't just autism but other things as well, because after all when it all comes down to it, you're seeing a shape that could have been formed by many possible causes. So as hard as it is to think about right now, please try not to be overly hard on yourself about something you didn't know about. I used to wonder "had x been different had I been given the chance to rewind time" It dawned on me I'd make the exact same decisions because, after all I knew no different. I made the "right" decision at the time with the info I had and whatever mental state and emotion I had.

I hope this helps. I know I can't take away your guilt or pain.

Why is 'acceptance' such a bad word?

This is something I need help understanding: Why is acceptance such a bad word? I don’t care if someone is pro cure or anti cure. Acceptance is something worth striving for.This was a reply I got on a forum:

“Oh what a great suggestion! Parents listen up. Just accept that your kids stomach will hurt,and that the child will become difficient due to lost nutriens from loose stool. Embrace those seizures, dont try to change them.If they child should headbang try giving him some music to bang to. I particularly like VanHalen, ZZ top. Good headbangin music. If they smear why not try putting it in an art gallery? When the child screams and arches back for heavens sake measure it and keep track, we are bound to be able to get one of them in the guinis book of world records!”

When I mean acceptance I never meant to “accept” head banging (self injurous behavior that this person put rather rudely), stomach upsets, diarrhea, seizures, poop smearing an the like. No this person completely missed my point.When I talked about acceptance I was talking about making changes and being more tolerant of a society. What do I mean by tolerance?
I mean let’s stop looking at people and treating them like they are freaks, flawed, unpeople, and worth being bullied, rather than helped. I’m talking about how one autistic person put it about there being a lot more “kickers” than “nurturers”

What is wrong with striving to make society bully free? Okay I understand we can’t eliminate every rude person in the world, but why not join the fight and strive for taking down the bullies in each of our lives, by teaching them acceptance by example.
I found it ironic when I went on a forum and read about a sad parent who is asking if it is okay to put their child on an antidepressant. The kid was being bullied! Putting the kid on antidepressants isn’t going to help the greater problem. That is like kicking someone when they are already down just because they are a victim.

Why is it when it comes to bully vs. victim, the victim is the one who is forced to “cured” or “changed” when really it is the bully that needs to be “cured” or “changed” Why should the bully get off Scott free? What message does that teach us as human beings?
And about employment: We’ve heard about autistic teenagers and adults being unfairly passed up for opportunities and fired for no reason at all. Why can’t we strive to change this? I hear a voice whispering in my head, “It doesn’t have to be this way. Things can be better.” But in order to do so we need an open mind and a willing heart.

Even if you as a parent disagree with me, can we agree on this? You don’t have to take your child off their diet, and you don’t have to stop such controversial treatments like chelation therapy. You can still support what agencies you see fit and still advocate acceptance.

I hope this makes things easier to understand. I don’t like people twisting my words to mean things I’m not saying. I feel very close to giving up, but I know that is my self pity speaking. It's just so hard to "just turn off" emotions at my whim. I wish I had that power, but alas I am a human, not a robot. Although times like these it would be nice to just become a robot and not have to contend with human emotions.

Discussions about Cure vs. Not Cure Autism

Someone on Autism Speaks asked a question to someone about what things would they like cured about autism and what things would they like to be kept intact. Although the question wasn't pointed at me I wanted to take a stab at answering. This was my reply:

Strengths of autism I wish to be preserved:
- Value for honesty. Many autistic people either cannot lie, or suffer a guilty conscience if attempting to lie. If I do lie, it is usually unintentional and I am quick to fess up. I HATE dishonesty with a passion. I also feel the need that everyone else needs to be honest as well even if the truth brutally hurts. "The truth shall set you free" is something I've heard along with, "The truth will always be found out." It makes no point to lie.
- Value for details and integrity: I am glad I spotted the fly pupae in the ketch-up dispenser at Mc D's. They were maggots earlier that week. No one bothered to clean the container, except for me. I didn't care how much ketch-up I had to dump out at my shift. My concern was for the health of the customers. I dismantled that thing and washed it thoroughly so no old residue remained. As far as I know I may have been the only person who bothered. Since I worked only once or twice a week, most of the week it got neglected and smelled rancid.
- Willingness to stand up for what is right regardless of whatever everyone else is doing. Since we are not popular to begin with and nor do we strive to be popular, it comes much easier to go against the grain to do what is REALLY right.
- Persistence to do in depth research on a subject. Very few people have the patience to research just about everything they can find on a particular subject to become a master at it. If an autistic person can "switch" obsessions from time to time like I do, then I get to learn a lot of stuff and use it to help me understand people and things.
- Some autistics have strong visual abilities. Temple Grandin is one. She could get down and see things as a cow would. That gave her a unique perspective to spot things other people wouldn't. Most people would be afraid to get down on all 4's as an adult in plain view of other people. This didn't bother her. I too have visual abilities, but I am young and still trying to find my niche so I can use them.
And any I didn't list.
---Things I'd like to see gone or reduced. "Cured" if you must.
- Inability to communicate. I honestly believe if one can help break this barrier, than a lot of the head banging, butting, biting, hair pulling, lashing out, and you name it will subside and be something that only happens rarely.I've found stating I am anxious or overwhelmed before really feeling it seems to help prevent a meltdown from occurring.
- Fecal smearing. See if they can be given something else to use for "art" and work on developing some kind of talent, or give them other things to manipulate with their hands.
- Potty training. I'd like to see autistics who struggle with this become aware of when they need to go before it is too late. If there's any thing wrong with the toilet, how it flushes, the "feel" of the toilet seat, or anything else bothering the autistic person, I'd like them to be able to communicate this and work out a solution.
- sleeping issues. That's a toughie I could never resolve, but at least I can be quiet at night (as an adult). I think a lot of it for younger kids is things like nightmares and sleep paralysis. Both are very normal, but with an inability to communicate, they can't express this being the cause of their nighttime freak-outs.

An Experiment for those dealing with aggression and meltdowns

Anyone here willing to be my guinea pig for this experiment? This was an idea that came to me last night as I was trying to sleep.
When your child is about to be in the heat of a nasty meltdown:
1. See if you can distract your child before the meltdown occurs by finding something else for him/her to do to calm down. One person mentioned in an email that getting her son to do crafts seemed to help.
2. After the child calms down, rather than asking questions like, “How are you feeling?” or anything to do with emotions, try coaxing your child to explain what happened right before the meltdown. “What happened before you started crying?” may be a starting point. (Even if you know or may have an idea of the cause, ask anyway.)
3. If they can’t speak or “don’t know” see if you can encourage them to either write, type, or sign out what went on. (This may work for nonverbal autistics with practice)----------------------------------
The reason behind this experiment is to get the child to use their cognitive thinking ability. This seems to be a strength shared with many people on the autistic spectrum. I asked Jonathan Mitchell (pro cure and likely non-verbal) what he thought was his strength. “Articulate and write well” was his answer. Not surprisingly this ability seems to be common with the aspergers and HFA autism.
Emotional thinking and understanding is one of the weakest areas for an autistic person. To know intuitively what one is feeling without being able to identify WHAT they are feeling is a set-up for frustration and anger. This ability between cognitive ability and emotional ability can leave quite a gap, and this may cause a lot of intense frustration.
For me, in order to understand feelings, I had to classify them like discovering a new species. Once I put a name to the emotion, I could know what I was feeling and begin to work on an appropriate coping mechanism. With any hope this experiment will help an autistic person to start thinking and understand more about themselves. Hopefully this will help them begin this process to understand their own emotions on a cognitive level. Once someone can understand their feelings, coping with them should be much easier. Eventually in time, maybe this cognitive ability will help the autistic child to understand other people’s emotions on a cognitive level.
Cognitive thinking is somewhat different than actually feeling. The child may still not show the emotion on their face (unless he/she finds it to help, then the child will likely practice that expression.) With any luck most of the meltdowns will be a thing of the past, except for an occasional bout when dealing with new and unknown situations. Even those hopefully will become rare.
I really hope this works. If it does I want to pass it on.

Destroying Foxgloves and picking Azaleas

I thought to myself I wouldn't ever start a blog because it just isn't for me... Well here I am. It's Monday late morning and I am volunteering as an indoor gardening aide in a local conservatory. The gardener who normally gives me instructions was gone and the volunteer who usually partners with me wasn't there either.


The gardener who filled in, led me to a cooler greenhouse filled with foxgloves and Azaleas. Such a pretty picture I thought. "After my shift, I'll get my camera and capture this pretty sight."

"How pretty," I told the gardener. (not exact words.) I looked up and stated "Snapdragons." The gardener as well as another volunteer who happened to be there looked confused.



Autistic moment... My mind read "foxglove" but it came out as "snapdragon." I joked and said, "I know what I am talking about, I just can't get the right word." I also joked and pointed out the similarities between the two. The gardener points to the area.

"They're going out," he says. What? I was hoping he was pointing to something else. After all being so called "High Functioning Autistic" (PDD NOS if you want specific), whenever someone points to something, I look at their finger first and then to where I think they are pointing...



Since I'm looking at where they are pointing from my perspective, not theirs, I find myself somewhat confused sometimes if what they are pointing to does not match the object they are describing. Anyways I was hoping that was the case with these tall beautiful, perfectly healthy snapdragons, I mean foxgloves...



Nope. No such luck. The gardener grabbed one and without giving a a care, tipped it over to its side over a trash can. Immediately he lopped off the trunk and instructed me to cut as close to the soil as possible. After that he set the pot down on a dolly.



I looked up at the table full of foxgloves, felt a tinge of sadness, but like a heartless robot, got to work dismantling one at a time. As I got into the motion, I started thinking and reflecting all kinds of deep thoughts about society, how people misunderstand autism, and so on... My thoughts raced from how society seems to have a disease for every personality quirk... Okay I'm jumping a little there, but if they haven't they soon will... I hope to elaborate on that in another post...



In the process, I thought, what word would describe an autistic mind? What word describes my mind? Lots of people assume that a nonverbal autistic is just a "retard" and devoid of thought...

Well I have a small assignment for anyone who stumbles upon this blog. Google: Amanda Baggs and click on the you-tube link to "In My Language" It has been proven to be her words. No hoaxes, etc... If that isn't detailed thinking, I don't know what that is.



Perhaps that is what Autism is: A detailed thinker. Some people may think autistic people are absent minded, lacking common sense, not being able to process all senses at once (The one sense at a time could be true for some). "Lost in thought" perhaps is better suited. I know while I am deeply introspecting upon whatever fancies me at the moment, it is hard to focus on the outside world besides simple tasks. It works vis-versa. The more complex the external task, the less I can concentrate in my mind. I can't think detailed thoughts when crossing a busy street and focusing n the cars around me. Likewise while I'm trying to think of a solution for world peace I cannot be focused on a someone trying to tell me about how wonderful their relationship with their boyfriend is.



No wonder why I don't make good communication with most people. We are in two different worlds of thought. The outsider is focused on the here and now; what things are in front of them.



My mind is on the deeper things, like trying to figure out the meaning of life, what makes up thought process, why certain religious sects get into such violent wars when their ideology is supposedly wishing for peace... Hmmm. I wonder who is the more disabled?

------------------------

Okay, Is this a blog about foxgloves and gardening or a blog about autism? Well stick around and see. I have lots more in my head than I can ever write in one given moment...

Feel free to read an essay I wrote for Autism Awareness.