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FASD and Autism…

I was recently diagnosed with Autism Spectrum Disorder, too. About 3 weeks ago. I have not said anything, here because I don’t know how I feel. There is one thing to think you have something, but then you are actually diagnosed with it. I went through the same thing when a doctor said I had all the characteristics of someone with FASD. I knew that you could have both. I actually wondered if I did. I have heard that people with FASD can have both. I know both can have a lot of the same traits, but I had a neurologist ask me a bunch of questions and he said not only by my answers, but in observing me, he knew I had Autism. Hmmm. Someone asked me how I felt. I didn’t even answer. I really don’t know how I feel about it. I’m not saying this is bad. I have got to know a lot of neurotypicals in my years and I can honestly say, there is not one I would want to be like…lol. So, I’m okay with being on the spectrum. When i wrote Autism Spectrum Disorder, the word that I kept staring at was Disorder. Really? This is a disorder? I want to look up what that means. Wait a second…okay a medical condition involving a disturbance to the usual functioning of the mind.

Okay. I will let that process.

Who says how we process and what we do is a distrubance. Okay. I get that things are not right. But who says that neurotypical brains are just that…typical?…

Just a question. Image

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Left eye Right eye

When I was five years old, the neurologist said I had no depth perception and my eyes do not converge. In other words, my left eye and right eye, do not work together. I have learned that my left brain and right brain do not work very well together either.

I was told that I would never be able to hit a ball. I hit home runs. 
I was told I would never be able to cut on the line. it took a lot of work, but I have no problem at all with that anymore.
True I still reach for the refrigerator and miss the handle…every time…lol.
BUT, for the most part, my brain has adapted. 
My left eye and right eye have never been able to work together, but my brain has compensated in a way that I don’t think anyone figured in. My left eye basically stopped working. I can see out of it, but my brain has shut my left eye off enough for me to see one of everything. This has allowed me to do things I never could have done. 
I was not able to read until like second grade. The words were all jumbled together. All I saw was lines of letters with no breaks between words. There was no making sense of it to me. Now, I read fine. I still have problems with comprehension, but I learned young how make up for this. I read into a tape recorder and listened to it until I understood.
Yes, we have disabilities…but yes there are ways to make up for them. 
We just find different ways to do the same thing others can do.
God gave us creativity!
God gave us determination!
We figure out ways to learn, retain, and comprehend…to the best that we can!
That’s awesome! 

Feeling lost

Last week was a dream come true to someone with FASD. I worked at a camp for kids with cancer. I was the photographer. I had a schedule mapped out for me. I had where I was supposed to be when. What exactly was expected of me. Routine. A focus cuz I knew exactly what I was supposed to do. I had purpose and I had everything laid out for me so I didnt even have to figure out what to do next. I knew.

This week I have none of that. I don’t have a schedule in front of me telling me what to do. I don’t even know where to start. I’m in between jobs I guess you could say and I can’t even figure out how to get where I’m going. Execution is not my strong suit. I know what I want in my mind but how to get there I have noooo idea.

That is the biggest problem with me. I will work 80 hours a week if I know what to do and if someone tells me exactly what to do and how to do it. I’m fine. I will do it all day and with all the focus in the world. But to be left on my own after a week of complete schedule and routine and focus–i have never been more lost. Well, I guess I have, but I am noticing it a lot more right now cuz of last week.

If we just had someone to put a schedule in front of us and say do this, we will be fine. I seriously would work the entire day if I just knew what to do and how to do it. I just can’t get my brain to figure out where to start and how to get from A to B.

And it makes us get afraid when that happens. So the fear makes us feel more lost and more confused so then we become majorly stuck.

I loved doing the photography all week. I wish that I could find a regular job where I could do photography shoots all the time and have a regular routine. I would work very hard at it. I have a gallery and it is doing amazing with the traffic and the feedback, but I’m not getting buyers.

It is so hard for people with FASD to make a living because we really do have disabilities and our brains are really wired differently, but we want so badly to be busy and be productive at the same time. When we don’t have that is when we start getting into trouble and start making the people around us annoyed with us.

If I just had a purpose and a focus and something to keep my busy I would be fine. I always have to be doing something. When I’m not I start getting weird.

I am trying to figure this out. When I’m like this it is even harder for me to explain myself in speech. My brain is more confused. So, the more I try to explain, the less sense I make so then I feel more alone than I did before trying to figure this out.

The worst place to be for someone with FASD is lost.

Structure. Routine. Someone to help us get from A to B. That is the key.

How do I start? What do I do? How do I get from what’s in my brain to action?

I seriously have no idea.

Concrete vs. abstract

R.J. Formanek a friend of mine with FASD. Brilliantly written. Had to post! 
When talking with people with FASD please remember how WE see things; Broad generalizations DO NOT work with many of us. It may seem no big thing to you, but in our “concrete world” we see it as dishonest, or lying.

Let me explain. Someone says “Everyone is doing this.” OK, so I look around and see a number of people NOT doing what “EVERYONE” supposedly is. In my mind the statement then becomes… untrustworthy. I can SEE that not everyone is doing this or that, but I hear something that makes no sense.

Some people consider this as obstinate, or willful action on our part, but trust me in this, we get so confused that sometimes we just “guess” at what you really want. My brain gets so full of questions and warnings that something is not true that I just can’t concentrate on what is actually being said. It’s almost like a car alarm in my brain… and it makes understanding anything after that EXTREMELY difficult. Car alarm in my brain? hmmmm, I kinda like that one!

So, if you really really REALLY want to be helpful to a person living with FASD please understand this is “one of those things” that many of us have a very difficult time with. Saying All, or EVERYONE, or NO ONE can easily send me into a panic mode. I know life is full of abstract concepts, but we’ve already dealt with Santa is not real, nor is the Easter Bunny, Superman, or any of those people, actors play characters, advertisers lie about products and any long list of things that confuse the hell out of many of us. And we learn at a very early age that the world lies to us. Imagine living in a place and time where the very rules of society are often based on lies. No wonder many of us get angry and confused… and kids often have no way of expressing this lost of trust. I’ve heard it said that when dealing with FASD people and rules… if you make a single exception to that rule… well that NOW becomes the new rule. Think about that. THAT is concrete thinking. The exception becomes the rule. Don’t forget, we live in “survival mode” 24/7… we need to.

I have the same problem with driving… there are rules of the road (concrete) and then there is how people ACTUALLY drive (abstract) and you put the two together and I’m ready for a meltdown! I know the rules and I follow them… and I know when the people around me aren’t following those very same rules and my mind goes into some sort of … primary mode. Survival. I feel very under assault and react accordingly. I need to be very careful about when I get behind the wheel, just to keep my own blood pressure to a normal level

These are just a couple examples of abstract concepts in daily life, and how simple everyday type things can set some of us off. I know I have a list!
Thank you for reading this, I’m hoping it makes some sense to some of you!

Overacting

I found this quote in an article about FASD…“They have poorly regulated emotions so they can really overreact to things. They act out usually because they’re confused and scared and the demands are too high. What it comes down to is people being aware of the nature of their needs and making sure they’re well supervised,” says Doctor McGinn.  

I felt this when I read it. The main reason I overreact with great emotion is because I am sooo confused and scared and the demands are too high…mostly because I simply do not understand. I don’t understand what is being said and I don’t understand how to apply what is being said. I don’t understand how to answer either.

The link for this article was at…http://www.eduvac.co.nz/news/2012/06/05/fasd-%E2%80%9Cit-invisible-disability%E2%80%9D-says-mother