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Posts tagged ‘ASD’

Words!

Out of all the things I have read on Autism, the one that has mirrored me the MOST is The Reason I Jump: The Inner Voice of a Thirteen year old boy, by Naoki Higashida. I have not gotten very far in the book, but I have to say that I have NEVER read anything that is exactly like me!! I mean, I read Temple Grandin and I’m like yea that fits that fits. But I have to say I could have written this book. The hardest things I have ever had to deal with is communication. One of my favorite things to do when I was a kid was do theater. The reason was, I had a script. I knew what to say, when. I didnt have to try to figure out what to say. The words were given to me. Conversations are THE most draining for me. I often times feel like I’ve run a marathon after a five minute conversation. Just trying to keep up. It feels like the people I’m talking to have had a head start and I’m trying to catch up the entire race. When we are all done, I’m not sure I even understood all of it. The biggest obstacle is to get the words out and hopefully the other person did not get that I struggled through every word.

 

Here are Naoki’s words. as soon as I try to speak with someone, my words just vanish. Sure sometimes I manage a few words…but even these can come out the complete opposite of what I want to say! I can’t respond appropriately when I’m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I’m tackling it on my own.

I have always wanted to communicate. I think that is one of the most basic needs of any human being. It is one of THE hardest things for someone with Autism to do.

Not being able to talk means not being able to share what you’re feeling and thinking. It’s like being a doll spending your whole life in isolation without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.

Just like Naoki, I figured out ways to communicate. I drew. I wrote. I would write in poetry and in notes to people all the time so they could understand what I was trying to say. I work at school for kids with Autism and there is a child we met who learned the alphabet in sign language, on his own, so he could communicate.

That is SMART! People with Autism are SMART. We are in there even though we do might appear that we are not. People talk around me. I have been around people that completely ignore me because I am quiet and they converse as if I’m not there. I have to admit, if there are a lot of people in a room and many people talking, the chance of me figuring out how to jump in, is pretty slim. BUT if someone gets me one-on-one, I will talk.

I ‘gap’ talk. What that means, is there are a lot of gaps in between my words at times. I know people with Autism who have gaps IN a word. It’s just processing.

The words we want to say and the words we can say don’t always match that well. Which is why our speech can sound a bit odd. I guess. When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time. These words are either available because I’m always using them or because they left a lasting impression on me.(Naoki)

When I try to speak, there are so many words that go through my mind at the same time. Most of the time, I get out the most simplest way of saying it, even though my mind said it completely different! It is so frustrating.

Naoki states, The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads. Once our reply has disappeared, we can never get it back again. What did he say again? How as I going to answer his question? And all the while, we’re being bombarded by yet more questions. I end up thinking, This is just hopeless. It’s as if I’m drowning in a flood of words.

WORDS is the most complex thing invented. They come in hundreds of languages and there are millions of them. There are slang words and made-up words and they all have their own meanings. The same word spelled exactly the same way, can have two different meanings. It is sooo complex.

Having Autism in an NT world of words. Ugh! But we are trying. it’s just exhausting at times. Just work with us. We are trying to communicate.

 

 

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My dad

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My Dad! I was 11 years old when he passed away, but he has been THE force behind everything I do. He was not my biological father. He adopted me when I was a baby. From the moment he got me, he loved me. He was an amazing man. I only had him a few short years, but he had such an impact on my life. Never missed a swim meet. He was my biggest cheerleader. When he found out that I had significant brain damage as a kid, he rebuilt our entire basement to have helps for me. He built a balance beam to help with spatial balance, he built me a chalk board because I had to do eye exercises all the time. He built areas for me to work on things that would help me. I got a piano to help with eye hand. I got in swimming to help with what they would not call metldowns, but swimming helped me immensely work all the muscles and get that build up of frustration, out. I really think that was why I was as good as I was. I just put every ounce of energy I had in that pool, and it worked…lol. He sat at the end of the pool, every race and wrapped that towel around me when I finished. When he passed away, nothing mattered as much and all the helps, kind of went away. It just did. Not anyone’s fault. Adopted mom had to work and she had a very taxing business…lol…literally, she owned her own tax business. And she just worked many, many hours which left me home, alone, most of the time. I could no longer go to the insitute that I was going to for helps. Just everything was dropped and my sister was given away to the system. (Long story–one I dont even understand) But this tribute is to my dad! Try to take someone on the spectrum and have them lose THE most important person in their life at such a young age. It was a tough one. I know, for a fact, I was never the same again. I have recovered and become strong. I do a lot of what I do today because of who he was for me. I often ask myself would dad want you to give up? NO! He would not. He was a WWII veteran whose ship was bombed outside of Japan and he was missing for days. Obviously, he lived through that, but the Navy ended up paying for all four years of my college for the impact that the war had on his premature death. I wrote them a letter for the War Orphans Scholarship and I won. So, in a roundabout way, my dad did end up paying for all 4 years of my schooling so I could get an education. I was always so proud that he was my dad. I would wait for him to come home, every day, after work. I would hide. He would have to find me and I would jump out like it was the first time to ever meet him…that was the way I was. I greeted him like he was the most amazing person every day. 

The last day of his life, he kissed me good bye in the morning, went to work. It was a Tuesday before Thanksgiving. i went to school and swim practice. A neighbor picked me up from practice. I asked where they were. Neighbor said that my dad was at the hospital, just some tests. Nothing bad. He would be fine. She had me go to her house and I hung out there until a call came for me to go home. She dropped me off and I walked in to a house full of people crying. My adopted mom was sitting on the couch. I said, ‘What’s wrong?” She said, “your dad.” I said “Is he sick?” she nodded yes. I said, “could he die?” she nodded yes. I asked, “Did he?” she nodded yes.

That was it. I ended up the rest of the night in my room. I was pretty much a quiet kid that really just did not talk or share how I felt. When things like that happened, I shut down. I really did not have an adult come around me, like the entire neighborhood came around her. It is interesting how the quiet one in the room is really not paid attention to. 

I do not remember my sister even being there then. Have no idea where she was. I still do not know. (Again, long story) 

I miss him. It was so long ago, that i cannot believe that I still remember sitting next to him on the couch every night after work–just him and me. Just chillin. In our own quietness. It was our time.

Dad–I miss you and I love you!

What a diagnosis does

A diagnosis.

what do you do with it?

People have said it’s a good base. 

true. It is a place to start.

Then what?

I mean it doesnt change who I am or what I am doing. I’m still the same Ann I was the day before I was diagnosed.

it does confirm what many have told me and what I have thought for a very long time.

It does confirm that I am not faking anything. That is really just a side thought. But it is like a confirmation to me that I really am who I am. I really do have these things and I’m not faking it or making it up. I don’t know why I needed that, but it was a validation. Every single avenue of the testing that they did, even the cognitive part pointed to Autism with their being more underlying cognitive stuff that happened in utero (FASD). 

I think the people around someone with Autism or FASD need that validation as well. To hear from a professional that “no, your kid is not doing this to get out of things. no your kid really does have cognitive and sensory issues that need to be worked around.” I think that helps.those who are with that person on a day to day basis. I think it helps confirm their thoughts about their loved one. I think that is necessary to get the helps at school and in therapies. All it takes is that one person to say YES you have Autism or YES you have FASD to get the IEP’s in place. to get all the helps in place for that child/adult that was needed and was not being addressed. The adults can rest easier now that their child/loved one will get the helps that they have been fighting for with no success. 

It gives answers to questions that loved ones have had for years. why does my child not want to play with the other kids? why does my child not like to be held or touched like other kids? why does my child not look at me in the eyes?

These are just a few of the questions that make one understand.

Now that the person has the diagnosis, they no longer have to be forced to do the things that are considered…’normal.’ 

I know for someone on the spectrum to look people in the eyes is hard if they are trying to hear you at the same time. So, that gives the okay to say ok, be who you need to be to be your best. Be who you need to be to function in this neurotypical world. 

We are forced to conform all the time and it gives us permission to opt out of that what they consider ‘normal behavior.’ and allow us to be who we are in our autistic or fasd mind.

trying to force us to act like an NT can be pretty damaging and all it really does is create a world where we are not able to be our best. the diagnosis allows us to be who we are to be are best. It provides the helps and the ‘excuses’ if I can use that word…to be who we need to be in order to operate in a world that does not cater to people on the spectrum.

It helps teachers and caregivers to know what to have in place so those on the spectrum can be their absolute best.

It helps me know that maybe down the line if I do need to have more helps, that they might be available for me. That is a safety.Forcing us to live outside of those safeties does not allow a great productive environment for us and it actually works against us. We can be amazing workers.We have the ability to make a lot of money and soar in life as long as the right things are in place to allow us to have our sensory breaks, or self-regulate, or not be forced to socialize at the work parties or give a speech that could send us into a meltdown. it gives us the right to be what we need to be to be our best. 

My daughter is going off to school soon and I will not have that help in place that I have had all of her growing up. Just having that safe person with you that you have a great relationship with, regardless of age, adds another brain to the equation when at the store, etc. 

I know I need the helps now that I instinctively had in place. Having a neuropsychologist confirm that for me, I think, allowed me to be okay with that fact. I always felt that I was a bother. Not that I dont now…lol…but I do feel like now its okay for me to ask for the helps.

It’s like i’ve been given that permission slip to have Autism and FASD and it be okay. I will always push myself. I will always force myself to go beyond what I can do. I dont need anyone to stretch me because I am already do that myself every single day. Just going outside and to work and to the store and even going outside of routine is stretching. the only thing others need to do is just have those supports in place when we go outside of our comforts. Just stand there while we go into areas where we are not as comfortable and it provides an immediate safety for us to stretch even more. 

We do know our limits. We do know when someone is asking us to do something beyond what we can do at that moment. Maybe it gives us the permission for others to really listen to what we are saying. I know we dont say it with our mouths necessarily. But our entire bodies are telling you what we want and what we need. 

I know if I can do it. I will put one foot out and I can tell by my own cells in my body if they are going to be able to handle it. Sometimes, just putting the foot out was about all I can handle. Maybe next time, I might accomplish a full step, but just know that most of the time, we are doing all we can to stretch.

I want to be able to be like the others in the room. I want to feel at ease when everyone is socializing. Sure, I’m quiet and I stand back and I dont talk, but that does not mean that I dont have things to say and I dont want those people to talk with me.

A diagnosis maybe helps others to know their roles in our lives. It helps them to know to come to us instead of force us to come to them and make conversation. it allows others to know that large groups are not the best, but we are great one on one.

If someone has a disease, they go to a doctor, they are diagnoses and then a plan is put in place in order to make that person better. 

Better? is that what we are striving for with Autism? with FASD?

Well, yea. I think that we can get…better…in that we can learn how to operate in the NT world one step at a time. We can learn ourselves to the point where we know–and I believe we know instinctively–what we can handle and what we can’t. But what a diagnosis does is allow the people around us to know how to act upon our actions and how to do life with us. 

Don’t walk in front of us trying to force us to go your speed. 

Dont walk behind us trying to pick up after us or watch to make sure we get there.

Just walk with us. Do life with us at our pace. We will get there.

And breathe…

We are fine!

it is you that isn’t.

Because we are not living like others in the neurotypical world, you think we are the ones that are messed up…lol

We aren’t.

The only time we arent is when we are forced to live outside of our comforts. Again, we do know our comforts. We know what we are capable of. We know what we can do and people on the spectrum really are the hardest workers I know. they will do anything to please. We don’t have that neurotypical gene in us that wants to slack…lol…

So know we are giving our all. 100% of who we are all the time.

Different is just that…different.

I heard someone say that we are not disabled we are differently-abled. That’s perfect. We just operate differently. so let us operate the way we do instead of think our way is wrong and that it needs to be like others…just look at it as we are fine. we are just operating where we operate but we will get there. 

Have you heard blind people who were blind at birth say that they operate in this world fine because they have never seen. They have always been this way. it is all they have known. they have instinctively gotten around this world just fine. just different than a seeing person.

That is the way it is for people on the spectrum. We are seeing ourselves around, the way we instinctively need to, in order to do our day.

Maybe this diagnosis allows others to let us do what we need to and not make us conform and BE neurotypical…

 

Results

How do I say this? Yesterday pretty much knocked the wind out of me. I can do two things with it. Either I can let all that the neuropsych guy said and let it take me down for the count or I can continue to do what Ive always done and let it empower me even more. I prefer to let it empower me. He even said “hats off to me with all I have accomplished.” I have proven even more to myself that most people would not have accomplished all I have with my brain. I just never saw that ‘not’ doing it was an option. When they told me I would not graduate high school. I just said watch me get a masters degree. When they told me I would never hit a ball. I said i will practice until I get homeruns. I could go on and on. I have always found a way to compensate. If I cannot do it this way, I will find another way. I am one determined mother ______. if I can say that. I am having a little bit of a hard time today. I never expected him to say a couple of the things he said. Trying to process.

I looked up where my IQ falls. It basically described me to a tea. I was surprised. This is what the definition of it said under the IQ I just found out I have. Above the threshold for normal independent functioning. Can perform explicit routinized hands-on tasks without supervision as long as there are no moments of choice and it is always clear what has to be done. Assembler, food service.

I know that as long as my day is without choice and everything is spelled out to me from the first moment of my day until the end, I am anxious free and fine. Give me choice and give me a day where I am just supposed to get thigns done but it is open ended…I will accomplish nothing at all. So…it is exact. That made me even sadder. I thought I had a higher IQ. But the thing is they figured in my working memory which he said never developed and my adaptability or whatever that is never developed. So with all that said…he did mention disability.

You know, I’m a tough one. I will never ever give up. When he showed it to me, I was not really processing it. I didnt even hear the number he threw out there for my IQ. My friend, who went with me, mentioned it later in the meeting and I said, “huh?” I said thats my IQ? thats really low.

I looked at his paper which showed in a nutshell that without a doubt 100% I have Autism and some of the stuff that was in there with all the cognitive stuff, etc. could have happened in utero. Hence what I thought with the FASD stuff. But he did add say that the social component does not have to always be there to the extent that I have it with ASD. That the social anxiety with my ASD is so off the charts that he actually gave me that diagnosis as well. So,…this is another day.

Just a day.

I said to him…well all I want to know is how I make this all stronger. He said give me one thing you want to work on. I said my memory. I have like a very low ability to do short term memory. After repetition I can retain things a little better. that is why it is harder for me in the reading, as well. But I have a great word knowledge…I knew that…lol…and I can write…woohoo….

But the ability for comprehension and retaining I do need to work on so he said I need to work my brain because it simply did not develop. The frontal lobe part of my brain did not develop wehre I can bring forth information, etc…

Anyway, he said go to luminosity.com.

You bet I will.

I will do whatever I can to make my brain stronger.

This was harsh news, but news that I know will just make me stronger.

And I said to my friend, it just proves how strong I am. How I was able to accomplish these things that I never should have been able to. I just found another way.

And I’m not going to stop.

just another day.

Really?

I have disabilities, but I am a person. I have feelings. I deserve respect.

I dropped my test off at my neuropsych yesterday. A secretary was there that I have never met before. I walked in and gave her the test. It was folded. I handed it to her and started to leave. She opened it and just kept looking at my answers. I said, “That is for the doctor.” She looked up and said, “What?”

“I guess I should have put it in an envelope,” I said.

“I’m the one scoring it, anyway,” she said back to me in a disrespectful tone.

Really?

She is the secretary for a neuropsychologists. Where is the sensitivity?

I was not told she was the one doing the scoring.

And if she is the one doing the scoring, she could have waited until I left before she opened it up and looked at it…right in front of my face.

I was shocked.

At first, I thought…oh boy, I did it again. I have a mouth. I should have kept my mouth shut.

I some friends and they said absolutely not. that was unethical. Others have told me that I need to say something to the doctor and let him know what she did.

I will. Next week when I go for an appointment about my results.

It’s interesting that my first thought was I wondered what they thought of my reaction. One friend of mine said, “They need to worry about what they did to you and how you feel. You are the client.”

True.

Just because I have disabilities does not mean they do not have to give me respect, confidentiality, inform me of what is going on, and treat me with common courtesy.

I wonder if they treat others like that.

Hmmm.

Not cool.

And to add…this is a very hard time for me. I am very sensitive about this. Everything they do and how they handle this is critical.

Really not cool.

Executive functioning test

When a doctor told me I had all the markers for FASD, it was a hard one for me to accept. I have always been the type of person that has been determined regardless of circumstances or disability. I know I have one. I really didn’t need anyone to tell me. When i was five years old, my kindergarten teacher told my adopted parents that I had to go to a neurologist. There were already concerns. I had been a failure to thrive baby. I did not really talk. I was, very much, a late talker and I didn’t connect the way a lot of other kids did. I saw things differently. I didnt have a lot of the eye hand coordination and I didn’t have spatial sense. I still dont…lol. When the neurologists said that I had significant brain damage and I would not graduate high school, they did not factor in my determination. Have you ever been the type of person, that everything you do, people look at you in this surprised look like WOW, I never knew you could get a masters. I never saw you as a mom. I never saw you being able to do _______________. Well, most of the time, I surprise people because they only see the disability.

My boss would say, she knew I could do it. She actually is a special ed teacher for kids on the Autism Spectrum. I always knew it was a possibility that I had that, too. I was told by one neurologist as an adult that it was most likely Autism, but he dismissed it to look at other things that were not important. I did not even go back to him to find out what he wanted to do. He was disrespectful and I was not impressed with him.

Safeties need to be in place in order for me to accept someone testing me for disabilities. Now, that was there when I was to a genetics doctor at Akron Children’s who said that the FASD was there.

Now, two years later, I decided to go to another neurologist. Some of our kids, from the school, had gone to him and he is able to diagnose autism. I went and it was pretty much 100%. As my boss and best friend says it, about 110%. When I was there about a month ago, we discussed the more cognitive issues that could be related to FASD…besides just the Autism.

Executive functioning can be in both FASD and Autism. I didnt even know really what Executive functioning was. I didn’t know what it was when I went for more testing last Friday. I sat in his office for three hours. He timed me for just about every task I did and I realized that I am a pretty slow processor and I do not have a very good memory…lol. He started off the tests with tasks like reading 20 words to me and I had to say them back. I could only say like the first three or last three because I was not able to remember the rest. He read them again. I maybe remembered one or two more. We did it again a couple more times. He then put them into categories. I could remember the ones I already remembered. But not any more. then he listed them back to me asking if any of them were on the list I may have forgotten. There were a couple that were a maybe, but for the most part…not so much.

He had me say words that started with the letter A and I had a minute. I have to be able to hear something or look at something in order for me to bring it out of my brain. I cant bring it from nothing. So, these were my words…a, an, am, and, animal,….he said ‘keep going’ i saw a book on his desk with the word administration on it, so I said that word. But that was it. He then said ‘ok now words with the letter ‘f’…go.’   First thing out of my mouth was, ‘can I swear.?’ He said yes. But I couldnt say it. But I said words like…fun, freak, fork. that might be it. He said ‘keep going,’ but nothing.

He told me to say animals and I could do that a little better cuz I love animals and actually love to take pictures of them and it is a passion of mine so I had that more imprinted on my brain. I probably listed at least 10.

He read word problems to me….um….he lost me at the first word. He could repeat it once, but other than that, I had to solve it….I did not do well on this. I was not able to process what he said. Words blended into numbers very quickly and within seconds, all I heard was blah, blah, blah. I just passed on most of those.

He had me do patterns. I realized that I could do the patterns, (I think–dont know results yet) that were on top of each other, like 2 blocks on 2 blocks. easy to see.. but the patterns that were in a long series, i could not retain from beginning to end to get the pattern. it was way too hard and I’m normally good at patterns.

SPELLING. Hey, I’m good at that. I’m a writer. I was a journalist for many years. I think I did great at that! All the writing I have done has imprinted words on my mind that I really am good at spelling.

Patterns on the computer. Not only does it say incorrect on the screen, it makes a noise that lets you know that you really dont get it. i got most of them wrong…lol…So, I heard that noise reminding me that I got it wrong about a hundred times.

I actually looked up executive functioning because I had no idea what it was. I guess you can have a high IQ but still not be able to know how to use it. There are people who have a lot of degrees but dont have a job because their executive functioning is so low. Mine is pretty low, but I have always made sure I had the supports around me in order to watch or figure out what to do. I do the things I do. There are a lot of things I really do not know what to do. If you tell me step by step or if I watch you carefully or you visually show me, I can figure it out.

We will find out the results, next Friday.

I will let you know. Image