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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

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

FASD and education….from someone with FASD

Lately, I have been hearing from FASDers and their caregivers that there is quite a bit on FASD prevention, but there needs to be more services and education for those who are currently LIVING with it.

Is FASD still considered NEW?  People have been born with alcohol exposure since there has been alcohol. Why is there NOT more services in place? A site that I belong to for those living with FASD and their caregivers/external brains) has special ed teachers as well. I am blown away that there is not more being done in the schools on FASD.
I have learned in FASD circles that the proper codes, etc. are still not in place for FASD children on IEP’s. Those living with FASD state that they are helping their doctors understand FASD. Those living with it are having to advocate for themselves, pass out literature, and educate. 
Yes, I agree with the comments that those who have it are the best experts. We have to deal with our brains every day. I guess, and this is strictly what I’m hearing on other sites, that they are trying to get the right definition, symptoms, etc. for FASD in the new DSM V, that is going to be coming out. Those ‘experts’ are having difficulty trying to figure out what to do and how to understand FASD.
Well, for one thing, spend one day with one of us and you will understand that this is VERY complicated. It would be nice if the EXPERTS (doctors, etc.) would make a panel of FASDers and their caregivers and   spend a day just asking US questions. Diving into the minds of those who live, eat, and breathe it every single day.
Why are there no IEP’s in place for FASD? I heard, and again I am not an expert on this and if anyone can give me more insight, that would be great, but I understand that the education is just not out there for current teachers, school districts, etc. to truly understand how to deal with FASD children in the classroom. Some schools, yes. Some schools, no. 
Why is FASD not recognized by the average person? I do know, from a personal level, that when you say FASD, people do not understand anything about it. They do not know how much it resembles autism in sensory issues, etc. In fact, many of us could have a dual diagnosis with FASD and autism. I know I could. I fit under both in a lot of ways.
I do know that I do not see commercials on television on FASD. I do know I have seen prevention ads at times about not drinking while pregnant, but there is nothing out there about those who are currently LIVING with it. We don’t have an FASD month. I don’t even know of FASD ribbons, like so many other causes have. 
When I wrote a blog, initially for Jeff Noble, an expert on FASD,  I was told from many, that the adult voice was missing. That is the reason I started the blog LIVING with FASD. I realized that not only the adult voice was missing, but also the HOPE in FASD. 
I have had people call me from other states, since this blog has started, thanking me for this perspective. Letting me know that this perspective is just not out there. I have had many let me know that they are learning more about their own loved ones with FASD through this.
I have heard the main connection people have had with FASD, until recently, was the book, The Broken Cord, that was written decades ago.
I do realize that all those with FASD are NOT the same and I do not ever want to be the expert for all LIVING with FASD. All I can do is give my own thoughts, feelings, and opinions on LIVING with this. 
It is sad, that the perspective has not been out there.  I belong to a fb group for FASD. I have learned more there than I could from any expert. I am so thankful for the adult FASD individuals I have met. I know we are different, but I have found TWINS…lol. I fit. It makes me so happy to find like- people.
Living in a world with NT’s (neurotypicals) is hard when your brain absolutely, positively, does not operate like anyone else in the room. It is hard to explain what is going on when it is going on. It is hard to express feelings and emotions. I don’t do well on WHY questions because to tell you the truth…I really don’t know why and most of the time, I don’t understand enough to even answer a question…lol.
There is soooo much to living with this, what I call, sensory-unfriendly, brain-confusing disorder that we live in.
One thing that I would love to convey to those who do not understand FASD. We truly want to do what is right. We often times just dont know how. We are not as defiant as some might think. I know it appears that way, at times. But honestly, we just do not understand. I know I think I am doing what I was asked, only to find out I did it completely wrong. 
I’m sure it would look like I didnt listen. I know it might have looked defiant. But honestly, my whole entire heart wanted to please and wanted to do what I was asked.
I wish teachers, etc. understood that part. Because if we could do it right…we would. 
We need more education on the basics of who we are. And again, like many disabilities, we are not all the same. BUT, we do have general characteristics/symptoms that fit under FASD. A spectrum of the disorder. 
This is an example of what I have experienced when it could appear defiant or that I wasn’t listening. “Ann, go downstairs and get peanut butter, sugar, and napkins.”
As I walk downstairs, I am going through my head what I was told. okay…peanut butter…..ummm…

I bring up the peanut butter and put it on the counter. “What else did you say?’
“You didn’t listen to me.”
I’m quiet because I do not even know how to answer that statement. 
An example in the classroom is the teacher is talking. She gives instructions to the classroom. I hear the first few words than the rest becomes…blah, blah, blah. I have to look around to see what the other kids are doing so I make sure I’m doing what the teacher said. It looks like I’m cheating. I’m not. I simply want to understand what I’m supposed to do. I still do not understand. I sit. I don’t do the work. I want to do it, but I don’t understand what I’m supposed to do. The teacher tells me again. Many steps in a row. I only remember the first couple. Again, confused.
Defiant? no.
Didn’t listen? no.
Wanting with my whole heart to do what was asked? YES. 
Defeat. only to feel like I failed. I didnt do what I was told. I let people down. Everybody else understood, but me.
This is why understanding FASD is so important. If the education is out there, than teachers will understand that one instruction at a time works. Distractions in the classroom make it harder to focus. Slowing down speech is vital. Making sure the person with FASD understands, is key. If not, don’t make a big deal out of it. Patiently, explain again. One word at a time. Processing is hard. Allowing as much time as needed for the person to understand what they are supposed to do. Once we get it, we will do it and we will give our all. And we like PRAISE when we do it right…lol. 
I know for me, I am this adult, immature kid that loves making people happy. My whole being lights up when I know I did something right and that I made others happy. 
Well, that’s it for now…
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