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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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All I hear is blah, blah, blah (reposted from my blog on FASDforever)

My blog that was posted on Jeff Noble’s FASDforever. Thought I would repost on my blog. It was originally posted and can still be found on FASDforever website. With FASD, it is hard to hear what others say, a lot of times…hence the title All I hear is blah, blah, blah. Well, I’ll let you read it…




There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact,  I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.

I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me.Most of what is wrong with me, people can’t see.
Unseen things are hard to understand. I know that one first hand.

When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong.  My teacher contacted my adoptive parents and told them I needed tested. FASD was not a diagnosis, back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.

Struggling was all I knew. If i was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life.It was every moment life. I couldn’t see words like other kids. My eyes did not converge and i had no depth perception. So, I saw two of everything and the world was flat.  Yes, Christopher Columbus, the world is flat…to some.

I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.  

Number one, I became the most determined kid in the school. I might have gotten C’s, but they were C’s  I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.” Well, we all know what lights the room at night.

I know what it feels like when everyone in the room knows you are struggling.They told me I would not graduate high school. I got a masters degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.

I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate helps in order for me to be my best.

The second thing is that I can LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.

I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.

Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.

Short term memory and FASD…adult style…

The other day, my external brain asked me to leave the toothpaste with the lid facing up because…this is where it starts to get fuzzy…lol. No idea why. Also, by the time I went to do what I was told, I forgot if I was supposed to put the toothpaste lid up or down. I stared at it for a few minutes completely wondering what in the world she had JUST said.

My daughter and I live with my external brain. (the person who helps me understand my surroundings.) We don’t have laundry facilities in the apartment and I told my daughter to get her clothes because they should be done drying. She went. Five minutes later, I asked her if she got her laundry. Guess who has short term memory problems!

Yep! Me.

Living with this is so hard, as an adult and as a parent. Fortunately, my daughter, 16, is one of my external brains and she rarely takes advantage of this, but when she wants to be her normal teenage self…well…she absolutely can use it to her advantage.

I wish I remembered things like everyone else. It can be embarrassing at times when I forget something that JUST happened.

When I was five years old, in Kingergarten, the neurologists said that I had significant brain damage and retention was going to be just about impossible for me. there are times I remember. I have no idea why certain things stick and most things don’t. I’m not sure if it is something visual that goes along with it that all of a sudden, just something sticks and becomes a long term memory, but for the most part, I really struggle with this.

If I don’t write it down…chances are, its gone within minutes…or seconds.

In school, as a kid, I normally forgot what the teacher said, right after shehad  said it.

I read something the other day that I know for a fact, WORKS for FASDers in the classroom and at home.

One: Keep things simple when explaining.
In just a few words, say exactly what is wanted. Without detail. Just very specific. Once something starts off into too much detail or explaining, they lose me. So, say what you need to say in the first sentence.

Two: Be concrete.
Us FASDers DO NOT understand abstract AT ALL! I often times don’t understand words that are said until I can put something concrete to it, then I get that ah ha moment. We do not understand innuendos. We do not understand a lot of body language. Just say exactly, in short phrases, what you want or need.

Three: Repeat, repeat, repeat directions and rules.

Four: Have the FASDer repeat back what they are supposed to do. Make sure they understand the command. This helps tremendously! It forces the direction, I think, to go into a different part of the brain. I’m still not able to go too much further than two commands at a time, but saying it back absolutely helps me to retain it.

Five: Be consistent in the learning environment.
Transitions and out of the ordinary things completely can be devastating and create anxiety in someone with FASD. It absolutely will wipe out my memory if something happens that I was not expecting. Routine is important. Very similar to austim. Try to be as consistent in how you teach and the structure of the day.

Rethink
Reteach
and RESPECT

I can’t speak for all FASDers, but I know for myself, being like this has been embarrasing, at times. I work very hard to look like I understand everything that is going on around me.I think we are masters at ‘looking like we understand when we really have NO idea.’ I nod and say okay. I try to look busy as I watch everyone around me. I watch what they do to see what I’m supposed to do because I didn’t retain a thing. I have had teachers say things to me that left me feeling worse than I already felt. They didn’t get FASD. They didn’t understand that I didn’t do it on purpose. And even though they told me several different times, I still did not remember.

To go back to the laundry thing…I did my friend’s laundry, the other day and I brought them in damp. Now, I know not to do that, but we were in a hurry and I had dried them twice and had another load in the wash and I knew we had to go. Sooooo I brought hers in damp.

I told her that for some reason the dryer did not seem hot enough. She asked me if I checked the settings.  Ohhh…the settings…and I forgot what to do with them.

She told me it was okay if I had never been taught.

See, that’s the thing…I have been taught. Unfortunately, with FASD, we are learning THE SAME things for the first time…all the time…lol.

It can make life fun…there are a lot of firsts…lol.

The sad part, I think is…well… I really want to learn and retain.

My Kindergarten teacher figured out that I needed a lot of help. More than what she could give me. Mrs White. She is the reason I got my neurological testing. She got outside professionals involved and to this day, treats me with respect.

She came to my graduation party when I got my Masters. They said I wouldn’t graduate high school so she wanted to celebrate with me.

The reason I go through college and my graduate program was… I studied ALL the time. I was able to retain enough information to do well on each test.

Persistence. Perseverance. Determination. These are the keys to learning when you have FASD. It can be done! Don’t let anyone tell you, you can’t. BUT, you have to be willing to work very hard!

I had a roommate, in college, that got all A’s. Never studied. I studied all the time to get a C. It was what it was. I had two choices. Cry about how hard I had to work and how everything came easy to her…(the not fair dance)…or work hard with a smile on my face and be willing to enjoy it, regardless.

I think my C was as good as her A. I was proud of myself when I looked down and saw a C because I knew it was the absolute best I could do.

One thing about me, and I think most FASDers, we are happy. We want to learn. We want to make it.  We enjoy. We let things go and move on…lol.

Maybe it’s that short term memory thing…lol.

Peace out