FASD and Autism…

Aside

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. 

FASD–my story

When I was five-years-old, my kindergarten teacher discovered I had significant problems and was unable to do what the other kids could do. She informed my adoptive parents that she felt something was seriously wrong. A neurologist was contacted and my kindergarten teacher’s instincts were accurate.

“Ann has significant and permanent brain damage. It is in an area of the brain that will affect comprehension, retention, and her eyes. Her processing is affected and I doubt she will even be able to graduate high school.”

He was right about what was wrong with the brain. What he did not factor in, was my determination. Nothing kept me down. I found ways to learn and ways to get around my disabilities. The more I heard I couldn’t, the more I said I’m going to find a way.

Forty years ago, they did not connect these disabilities with FASD, but we did not know my biological mom drank during pregnancy. A genetics doctor confirmed that it was FASD. 

I like to tell this story because I want to offer hope. There is so much negative out there about the diagnosis of Fetal Alcohol. Yes, it can be preventable, but what do we do with those of us who are already here. There needs to be more helps and more services and we need to start calling FASD what it is. It is a birth defect! Nothing less! Until we call it this, the schools will not be able to put list it on IEP’s. The right kind of services from Developmental Disabilities and doctors, eye doctors, etc. will not be available.

I sat in a class of other five year olds and was not able to cut on a line. I was not able to read until much later than my peers. I still have a great deal of difficulty seeing like others because my eyes do not work together and I have no depth perception. I do not understand a lot that is said and I do not process very fast. I have to be told things more than once and I have a hard time keeping out background noises. My skin hurts at times and I even want to take off all my clothes because nothing helps. I have routine. I don’t like very many foods. I have my normal likes in what I eat…what feels good in my mouth. I would be good eating my macncheese and peanut butter cereal and pasta for the rest of my life.

I don’t feel a lot of pain. For some reason that part of my brain is shut off. My balance is off. My dad built a balance beam in my basment to help with that. I had to wear an eye patch for eye problems. I had some helps, but after my dad died when I was 11, my helps pretty much died. My life changed…for the worst.

If anyone knows FASD, we do not like change. We do not transition well and loss is horrific. My dad was the closest person to me and he was my safety and what I would have called my EB (external brain) when I was a kid. His death changed me forever and I honestly believe I have never been the same.

Swimming had been my saving grace until my father died. I stopped that abruptly after. Everything stopped. My adoptive mom gave my adopted sister away because she was unable to cope and life got worse. It seemed like I was unable to do anything right and my grades went to F’s and D’s.

The schools said counseling was the best option. I was forced to go talk with someone, but my mouth did not work. My FASD affected my speech and speaking goes with stress and my brain shuts off. I don’t think I said a word to that counselor in the year I saw her.

I continued to go inward. Drinking became a part of my life. I would do anything to numb. I continued to find myself in situations that were not good for me. It was amazing I am alive.

Looking at this, I have realized that the reason all of this happened…I had an FASD brain and I was left to find my own way. My adoptive mom worked many hours, my dad had just died, my sister was put into foster care, and I had a brain that went into shock. I honestly believe if I would have had a good solid, external brain who was safe and who was looking out for my well-being when I was 11 years old the rest of my bad decisions would not have happened. I didn’t want to go in those directions. I was hurting and I had noone around me to guide me and to listen to me. Noone to pay attention to the fact that I was going in the wrong direction. 

External brains are so crucial to the existence of FASD people. We rely so heavily on those around us to be safe and to guide. Half the time, we don’t understand what is going on in the room. I constantly look to the people in the room to know what is going on. I would look to my peers to know what to do next for assignments. No, I was not cheating. I look to people in groups to know what is being said and done. I look to others to know if it is a safe environment or if there is danger. We really don’t know a lot of the times. We often find ourselves in dangerous situations and trust people we shouldn’t because we don’t have that thing in the brain that gives us a heads up. We are very trusting and we believe in people. We also forgive very easily and don’t learn from our hurts a lot of time and keep going back for more.

With all of this said, we are amazing people. I really believe that God has given me amazing talents and gifts with this disability. Things I would not trade. People have asked me if I would want a neurotypical brain. The answer would be no. I can sense things in people…I see a tear before it falls, I can capture life behind a lens of a camera beautifully, I am an award winning journalist because I have been able to capture heart-wrenching stories with the written word. 

My talents might be different than other FASD folks, but one thing we all have…we all have the ability and determination to take what we CAN do and make it exceptional!

thanks for reading and supporting the cause of FASD
Ann Kagarise

How much further along would we be if people knew about FAS

I woke up thinking about yesterday. I’m still pretty steamed. What is it going to take for society to recognize the effects of fetal alcohol syndrome? Babies die from it so that won’t get anyone’s attention. Why is it okay for a mother to drink while pregnant still? Even after all that is known.

Do we need a law in effect that actually states that it is against the law for a woman to drink while pregnant? Should we legislate for that? Should we line up a bunch of people with FAS and say this is what happens when you drink while pregnant? Well, that won’t work because most of us have invisible disabilities.

Do we have to draw images with umbilical cords with a handle that has the word KEG on the top of it with the mom’s hand on it leading toward the baby?

What gets me more is the lack of knowledge in this society that it even exists. They say the numbers are up around 50 in 1000 kids have it and it is even higher than that because most mothers do not admit that they drank while pregnant. Stats today say that there are more people with FAS being diagnosed than people with autism.

How come I can go to a man in a Barnes and Noble who is supposed to be very knowledgable about books and topics and he look at me like he had never heard the words Fetal Alcohol Syndrome? This was a man at least in his 50’s. Are we really there?

See, to people who have it and to their EBs (external brains) or caregivers, this is something they live each and every day. We eat, sleep, and breathe FAS.

I am not asking for that. All I am asking for is for more awareness. A month just for FAS. Commercials. Billboards. Speakers. Inservices in schools on FAS. The Rainman and Temple Grandin of Autism. FAS needs that. We need advocates. We need legilators paying attention and passing laws on this. We need chapters all over the country. We need centers for FAS adults and children all over this country. We need all the helps we can get.

IEP’s are not built for kids with FAS so they get lost in the system or misdiagnosed to fit somewhere else. So, they are treated as if they are autistic but they are FAS. Yes, there are a lot of similarities, but it is like apples and oranges. Completely different diagnosis. Completely different brain.

When I was first told I had significant brain damage and that I would never graduate high school, it was 40 years ago. I was told that I had such significant retention and comprehension problems I would simply not make it. I was told that that the parts of the brain that controls the eyes were so damaged that I would never be able to drive. My eyes do not converge. My eyes have 0 depth perception. My sensory is off the charts. My ability to process like others is significantly stunted.

Oh, I’m smart, they said. Very high IQ in fact. but I would have no clue how to apply anything I knew.

Huh.

What do we do with that?

That was 40 years ago. How much further are we than that.
We did link it to alcohol.
A genetics person give me a 100% FAS diagnosis with the words that “alcohol significantly contributed to my disabilities.”

So where does that leave us today?

FAS people do not have the ability a lot of times to advocate for themselves, but that is what we have to do. We have to educate everyone around us including our own doctors because they simply are in the beginning stages of even knowing what FAS is.

I know FAS individuals who tell me that they have to take fliers to their doctors to explain to them what it is.

There is noone more determined to LIVE and to make it in this world than someone with FAS. They literally are the most determined people I know. They will make it no matter what. AND we will make it without the helps, but just how much further along would we be if we did?

Just how much further along would someone with FAS be if they had educators, doctors, huge centers of research and commercials, advertising, awareness months, ribbons, and moneys pouring into this cause. What if everyone knew about it and I would never have another person look at me again as if they had no clue what FAS was.

What if people knew about FAS as much as they know about autism?

What if we actually had a diagnosis in the DSM V?

What if?

Oh, we are going to make it on our own.
BUT, we will be so much further along if we have all that in place.
if we had the helps
if we had the ieps with the proper diagnosis on it so Fas kids got the right educational helps.

If they did, they might be able to be who they want to be when they grow up.
They might be able to get there faster.
They might be able to exert that energy they have to put in every day just for daily living and excel in a job and in life.

If people did it with us, not just our external brains or caregivers, but I mean society like they do autism and other DD’s…just imagine how far we could go.

Just imagine how much less of us there might be!

That would be a good problem.

Maybe a mom just might think twice before having a glass of wine while pregnant.

If we can save one baby from becoming FAS…it would be worth it.

Video blog by Ann on why we need to call FAS what it is. http://hopefasd.blogspot.com/p/video-call-it-what-itfas.html