Friday, April 22, 2005

Gonna start a little business here soon with Nathanael promoting his graphics, fonts, and funny cartoons on t-shirts. They are really, really good. He wants to call the company Permanent Marker, Inc. (I guess the Inc. belongs there, right? We'll have to make sure we're actually Inc. before we write Inc. on stuff. Inc., Ltd., S.A......)

OK I'm going to be honest now. I've been researching this for a long time and I'm still not 100% sure, but I think I'm about 99% sure that when I was a child, and probably when many of my family members were children (especially on the Blaser side), I had a mild, probably the mildest type which many people have, case of Asperger's. I'm not trying to self-diagnose- I avoid that if at all possible- BUT the evidence is pretty clear. I think I still have this- that's why certain noises and voices bother me. Always have. I always hated it but that explains it. I actually suspected this a long time ago but until my little nephew was diagnosed with full Autism I didn't really, really look into this. It certainly explains SO much.

When I was a child I really was NOT on board with the rest of the world, yet I noticed little details, had fixations about things, things I still remember so clearly, and even though my verbal skills developed really well from about the age of 7 (some Asperger's have advanced vocab and talk early...I think I talked about on time). I think Nathanael has a LITTLE, little of this too...the fixations...I remember thinking my little 2-year-old neighbor Alex Schmid had it years and years ago (he's about 18 now, I guess). The intense interests are a sign of great intelligence but I think the Asperger's plays some role in some things.

My symptoms are something I remember subjectively, but I'm trying now to get a handle on this objectively.
1. Lack of socialization skills. For many years I attributed this to my being just such a homely child. I saw it kind of as a problem that fed on itself the more isolated I became. I figured people didn't bothered me because I was such a fright to look at. Which is true, I was just not cute. But this just doesn't explain my lack of skills. A lot of homely kids have excellent socialization skills. The kids CALLED me ugly, but really the whole thing started because I always preferred to be alone. I did not care much to play with anyone else until about the first grade when I found a friend who was, to put it mildly, kind of the same way.
2. I did not pretend. I did not play house. Or horses. I saw no point. Later when my friends began to play Dungeons and Dragons and that kind of stuff, I saw that as the most boring stuff ever created (think Magic, the Gathering- if I were 15 today, I'd be bored by that). It's NOT that I didn't have imagination, though. I drew, created music, played by ear, drew by memory, got excellent at drawing faces, which I still do. I was always very artistic. I do poetry. I daydream.
3. Teachers always said I was off in my own world.
4. I remember being tracked into the "slow" class in first grade. I remember it was the slow class because I was in there with other kids who were not considered bright. They had reading problems, learning disabilities, etc. Then, all of a sudden, in about the fourth grade, we must have all taken our proficiency tests, in which I always placed in about the 95th to 99th percentile. These little scantron tests (the kind of stuff I'm grading now) proved I was smart. My IQ was tested at genius level (though I don't consider myself to be one), which, btw, is about 135 or something and higher. I think my IQ at that time was tested to be 139. Let me tell you, genius level doesn't mean so much, because a LOT of people are that smart and higher. For example, my son Nathanael was tested in first grade to have the SB IQ of 157. And who knows how accurate these things are? The more you take such a test and average the numbers, the more accurate the number supposedly is, but if you take such a test repeatedly, it may also be measuring the face that you are just learning how to take the test better, not solve the problems innovatively each time. Anyway, I digress. (Feel free to skip all this reading. It's run-on, it's just off-the-cuff thinking, typing thoughts as they happen to occur.)
5. My mother took me to a doctor twice when I was little to try to see what the heck was the matter with me. Well of course in those days I think the doc tried to say I was just a little overactive. Today I may have been diagnosed with ADD. But it was not hard to get my attention for a long, long period of time if I wanted to pay attention to something. Words were OK, but people trying to COMMUNICATE did not mean much to me at all. I remember thinking that. I remember the drone of a teacher's voice, but yet I would be focused on the drone of a lawn mower outside the classroom window, noticing a drop in tone as air pressure dropped, meaning it would soon rain. I would fixate on that and pay no attention to the endless blah blah blah of words. Sometimes teachers nearly literally sounded like Charlie Brown's teacher. Not that it was always that way. Sometimes when a teacher was speaking, and showing something interesting, or teaching us letters, I was very attentive. But all report cards, especially during the early years, had me not paying attention.
6. I always played alone. I guess I mentioned that. But the teachers said that, too. Just about every report card.
7. I was fixated on stuff!!!!! Yes, I was. Later this may have developed into some manic episodes, but the fixations in early years were beads. I loved beads from Day 1. Counting them. Memorizing every single detail in a bead. Beads were utterly beautiful to me. I still can see beads that way. Such beauty in the detail of a simple plastic thing with a hole in it.
8. I was fixated on some routines. Like the school bus. I remember being so afraid to miss the school bus. If the school bus deviated even an inch from its prescribed routine, I remembered. IT was a huge event. A serious event. Something I remembered and something that scared me. I still remember once when a train was blocking the tracks we needed to cross to get to school. Mrs. Wyant took turned and had to go out into the country in order to find a crossing to get around the train. That made me curious and a little frightened. Any deviation in the bus routine was so fascinating, eerie, and strange to me. It's almost like a routine such as that was sacred, or inviolable, and if something happened to change it everything would be just haywire, almost the end of the world! I used to have dreams about the bus coming for me and it would be coming from the OTHER direction of my street than it did normally. Or I would ride the bus to my brother's school instead of my own.
At school when it was raining, instead of waiting outside for buses, we would wait inside until the buses were called. Our principal would announce that and I cannot ever forget the tone and seriousness of his voice. It was as if this man were God making that announcement. I was deathly afraid of missing my number being called and thus missing my bus. It never occurred to me that my parents would come and get me if I did miss the bus.
Another routine that even earlier I HAD to adhere to was that I HAD to watch Sesame Street every single day at 4:00. I watched the clock until the hands were at the four and the twelve. I knew then it was time for my program to start and it was absolutely every single weekday that I HAD, HAD, HAD to watch it. My favorite thing was a little thing called "dots" in which dots would come on to the screen in lines starting from the top left corner, until they filled up almost the whole screen. Then at the last minute one of the last dots would jump. Or roll. Or change places with another dot. Or the dots would start to laugh. That stuff was the MOST HILARIOUS thing in the entire world to me! I was bored with Big Bird and the storylines. But the dots skit, and the count from 1-10 skit, and sometimes Ernie and Bert, just because Ernie had a rubber ducky. The storylines- I don't remember them! I only learned later about David and Maria, people or Big Bird talking with the kids about this and that life lesson, etc. None of the storylines interested me in the least.
8. Those quirky movements. What I used to do was rock. Rock, rock, rock. I would call it "bouncing". I probably rocked until I was 7 or so. When I was in a chair I would bounce constantly.
9. How I played with toys was odd. The one thing that really convinced me about this was the fact that I used to take ALL of my puzzles, mix them up, and dump all the pieces on the floor. Then, I would put EACH piece on edge. I would then have hundreds of puzzle pieces on their edges. Later I would knock them all down but it was fascinating to me to have them all on edge. Is this not the same as even when autistic children line up their cars. They categorize. Memorize. Even spaces apart. Then, probably before I knew that our big US map puzzle pieces represented actual places, I memorized all 50 states. I do not remember ever not having known all 50 states. I memorized them as SHAPES, though. They were shapes, not necessarily places to travel, probably until we moved to Ohio and I understood pretty early the concept of maps. My parents would show me Ohio and Iowa and how Grandma and Grandpa (both sets) lived in Iowa and we were going to drive from "here" to "here".
10. Physical delays. Not too much but some. (Nathanael had a couple of physical delays, too, like bikeriding- took him years- but once he caught on he's been on a bike and has almost not gotten off yet- Lance Armstrong now). I was delayed in some physical activities. Never good at sports. Uncoordinated. Took me a long time to learn those things. I eventually caught up in bikeriding, jumprope, even blowing bubbles with gum, but much later than others.
11. Not wanting to be touched. When I was a baby my parents said I was content not to be picked up or touched. I was content to be left alone. I used to play with little lint balls on carpet. They fascinated me. But I didn't need hugs; in fact, I remember being a kid thinking grownups hugging me was so intrusive, and I didn't like it. Fortunately my family wasn't touchy feely with everyone else. We were not made to give hugs to anyone we didn't want to. Most kids need a lot more affection from their parents. Now as an adult I HAVE to hug my kids. I'm so maternal and demonstrative. But it's maternal instinct kicking in. My kids have been pretty demonstrative. Always wanting to nurse when they were babies. Patting me, being affectionate. Hugging me a lot. When they were babies they wanted to be picked up a lot. Hm.

I just never fit in. I always wondered what was wrong with me. I remember even the first day of pre-school I came home and said to myself, "they hate me there, just like I thought they would." But ONE day, there was a man (probably a student doing studies or something) who came to our class and took JUST me out. He gave me some beads and string, and I was utterly in Heaven. I still remember that day like it was yesterday. It was the most awesome day I had! I still even remember a light we used to pass going to pre-school in the carpool. We passed under this same orange blinking red light EVERY single day. It is so clear to me. I did not think pre-school could exist without us passing the light.

I am pretty convinced that I have had just the slightest of Asperger's. And I know that during my childhood my brain also rewired itself in part in order to do what was asked of it. Communicate. It's still been a problem for me but I've learned, but I always wondered why it was so hard. Also, why did certain sounds bother me. Certain sounds will ALWAYS bother me. I always assumed sounds bothered me, and my mother, and my grandfather, because we had this excellent sense of pitch; therefore we could hear sounds more precisely than most people. But this doesn't explain why some voices irritate me to the point where I cannot be around the person, and I feel terrible because it isn't the person's fault. Some people (but not all) chewing gum and snoring bother me. I just want to rip people's eyes out. But other sounds that bothered my grandpa (barking dogs) don't bother me at all. Now I realize that my brother Joe probably has this, too, in a different way. His issue was always lights. His memory is as photographic as mine is audiographic. Now when he's sitting and watching a movie, he can't have two lights uneven in light output or two different types of lights in the background. He HAS to turn one off. The setting of lights has always bothered him and I always wondered why the heck was he so irritable about something so little? I now realize that this thing goes with sight, hearing, touch, taste, and smell.
I have to find out more about it and maybe I'm totally off-base. It does explain so much, though. Why is this even important now? Aside from the fact that it identifies a part of me that I can try now to put to use instead of deny or overcome, I think I may have a little insight into the mind of an autistic person. Maybe I can be a bit of a bridge from an autistic's world to the "rest" of the world. Maybe I can communicate with Hayden. My little nephew- I just love him so much- maybe I will actually understand him on an intuitive level that others may not know. I know that an Asperger's person has a good chance of having an autistic kid. Mine are not autistic- they both talked at a young age, Nathanael was very early in particular with not only nouns but adjectives as first words, describing feelings, and Micah, well, he's not even close to Asperger's, I don't think- he was running at 9 months old and riding his bike at about 3. And is very, very social. So Nathanael may have a little of this thinking, but he's not autistic. But since this goes in families, and tends to go sometimes with musical/artistic ability (we are all very musical and play instruments by ear)...probably I and my siblings all have some form of this and I just hate the fact that it culminated in one of us having autism, precious little Hayden, I would jump off a cliff for him, I would lie in front of a train for him if I had to. I just want to communicate with him, I want to bring him out, and reach him too, and I don't know how much of a role I will ever play in his life since right now I'm not seeing them much (some private matters and I don't want to intrude)...I hope to play with him a bunch at Crowduck. I think there are things we can do to make autistic people comfortable and realize how they think and develop some of those brain receptors to be stimulus-specific enough to focus on some aspects of communication. I just think the world of Sierra and Hayden and maybe I was given a little extra insight by God because God knew that when I was 40 years old that insight would be needed. So here I am.

Thanks anyone for reading this epistle. I may be off-base and I may not have this type of thinking at all, but there are some convincing data on this and it tends to explain a few things. There may be more evidence in contra. Feel free to offer opinions.

10 Comments:

At 3:24 PM, Anonymous Anonymous said...

I've been giving this a great deal of thought. I'll get back to you when I can put something coherent together.

Aunt E.

 
At 4:33 PM, Blogger Ann said...

The biggest contra is that I developed a lot of creative writing ability. I realize now that I developed an entirely different part of my brain. In school I was a good creative writer, and now my son is much more creative than I am. I don't know, however, how much my creativity with words would have developed had I not learned to read and write.
Most of the stuff that happened really happened when I was little...but I can remember it so well. It seems I'm able to switch gears now. There are some technical/organizational things I'm good at (document control, technical writing, etc.), and then I totally switch gears to go into a creative expression. Some things I notice in one gear go completely by me in the other.

Maybe I'm JUST PLAIN WEIRD. :)

 
At 5:24 AM, Anonymous Anonymous said...

Give me a call anytime you want to see Hayden. Everything you say seems to ring true. Everyone has noticed through the years your inability to read social cues. I never understood it, but now it fits like a glove.

Hayden has seen alot of doctors lately. Screened for chromozomes(sp)? , test negative. EEG for seizures, no word but likely negative. We got his ADOS results back and he scored a 17. Form what I read on the internet this places him on the borderline of high functioning autism-(11-17)being high, (18-24) being low. I may not be correct about this but it is the best I could garner from a quick internet search. He is now in ABC pediatric for sppech,PT,and OT. The therapist he has worked with so far thinks he is realdy to talk. He has been talking more lately. It may be communicating or it may be echoing which is common in auties. The other day though when I was helping him step into his sandals he said clearly " let's go, bye". Our next step is to get him into an ABA program. This will probably entail an in home therapist around 2-3 hours a day.

 
At 7:05 AM, Anonymous Anonymous said...

Dave again, if you are interested in helping you may want to volunteer to be trained in ABA. The way it works:
1. We have an appointment with an ABA professional specialist down in Cincy. She will evaluate Hayden and recommend when and how much therapy he is to receive. She oversees his whole program and periodically re-evaluates the progress and goals.

2. She then comes to our house to train anybody willing how to use and apply ABA. It is a simple behavioral therapy. No magic or need for psychology expertise. It works by rewarding behaviors you want to elicit. The behaviors to be learned will be broken down into building blocks. Beginning rewards would be given for any attempt to do smething or say something you want him to learn. Later rewards would only be given for a closer approximation of the behavior you want to elicit. This goes on and on. From what I have read the big key is consistency from the therapists.

3.There aren't enough hours in the day for us to do this. Sources to be tapped for therapists are usually psychology majors at local universities or anybody else willing. The parents need to be involved in using this which we will be. Some kids get up to 40 hrs. a week of this. I don;t think Hayden will start at that level, probably 10-20 hrs. per week to start.

Aunt E. if you are reading this, I have heard through the family grapevine that Steve's son is having problems in school. I know it's none of my business, but I was wondering if he is in the ASD or PDD spectrum.

Dave

 
At 12:04 PM, Anonymous Anonymous said...

Ann - I am currently trying to recover from pneumonia and bronchitis, but want to talk about this with you when I am better. I hope to learn more about it, and to be able to help you help Hayden any way I can. I am so thankful to you for your insight. If only we had known stuff like this when you were little, but we didn't have a clue. I will talk to you later. Love, Mom

 
At 1:55 PM, Blogger Ann said...

Yuck, pneumonia. And you just got over something else about a month ago? These bugs haven't let up on you and dad this year, have they?

I would love to be trained in ABA. Let me know when the person comes to train people. In the meantime, I'd love coming for a visit as long as I'm not intrusive.

Yeah I know I'm pretty dense and everyone has always said I am spacey- maybe this is an explanation. :)

 
At 3:43 PM, Anonymous Anonymous said...

Being that I didn't know you growing up and only know you via the written word right now I am hesitant to add my opinion to this. I have some very strong feelings about things like this (the overall subject) and they aren't the currently popular ones either. If you wish to hear them I will share but only then. Then you can't get mad at me for them. ;-)

 
At 1:01 AM, Anonymous Anonymous said...

There is a book, published in 2002, called The ADHD Autism Connection by a woman named Diane Kennedy. She is a mother with a husband and three sons who all have some form of these problems. I bought and read the book after first hearing about Hayden's situation. This is not a technical book so much as a plea for the medical community to do further research on the similarities and differences between ADHD, which has been a "socially acceptable" condition, and autism in its various forms, which has not.

Steve's son Kevin, who is almost 7 and in first grade, has been officially diagnosed with ADHD, although he doesn't show symptoms of the hyperactivity part of the definition. He has been fighting having to learn to read. In January his parents did two things, one is start him on Ritalin, and the other is to hire a tutor/nanny to work with him after school. The success of the Ritalin is still being debated. I did not personally see a great change when I saw him in March. The tutor has helped some. At this point I do not know if he will successfully complete first grade this spring.

His other grandmother and I, as do some others, think he shows symptoms of Asperger's, although we are not well enough acquainted with either of these problems to make such a diagnosis. I did give Steve the book mentioned above, but I don't know if he's read it. I do know they are working very hard to find answers to Kevin's problems.

Dave, I feel quite certain that Steve and/or Cindy would be more than happy to talk to you about what they're going through. Don't hesitate to contact them. (You know they are very busy, and it might take awhile.) Kevin's sister Amy has been a big help in that Kevin is devoted to caring for her. She's a little doll and quite normal, though currently afflicted with the "terrible twos".

Ann, as for what you've written about yourself, I would say that you are very perceptive and have probably found the key to some of your personal history. I do have to say one thing about you that I don't agree with though. You really were cute. I know you had problems with your teeth, and that probably contributed to making you feel "ugly" until your orthodontic work was completed. But those of us who were older and could see beyond the temporary nature of your dental situation just saw the "real" you, and you were plenty cute!

I was also interested in your comments about music. My Dad's (and his Dad's!) love of music has affected my whole life as well (more on that some other time), and the sensitivity to pitch and sound in general is shared by all of my siblings, and was somewhat important to our mother as well. This is part of who and what we are, although I do not understand how that relates to Asperger's, if it does. I do know that some sounds drive me up a wall too, particularly white noise hums that stay at a constant pitch, like the 60-cycle/second hum of electric motors.

Over your whole life you obviously worked very hard to overcome as much of your sense of doubt as you could on your own. I certainly admire you for that. Thanks for sharing your thoughts. And thanks for your love of Hayden and for wanting to do what you can to help with his therapy.

There will be an answer for everyone. Maybe slowly, but it will come.

Aunt E.

 
At 6:52 PM, Blogger Ann said...

Thanks, everyone, for the comments. Toy, please DO add your opinions. I am open to any ideas right now since I don't know so much. I don't care what is or isn't in current theory.
I have done some research on this and find that a lot of Asperger's people have certain sensitivities to stimuli. I remember some years ago watching a show about a whole family with Asperger's (to a point where they wouldn't have been able to function independently)- they were sensitive to certain sounds- and all were virtuosos in music. There is some connection. But my knowledge of this goes about to Class 2 of Psych 101.
I do know SOME things about Asperger's (and maybe it is something that isn't Asperger's) make sense. There WAS some problem when I was little. I didn't want to be a pain. I didn't want to cause problems. I wanted friends. I wanted to relate to people. I just did not know how! I realize I overcame a lot of this later in life. I think there are ways the brain grows and matures that will adapt to the surroundings. So whatever it was, and it could have been the slightest kind of Asperger's, I have been working on fixing it. Though I still have some problems, I guess each person does. Some people with Asperger's develop bipolar disorder. I DO have bipolar disorder and have been managing that with Effexor for years now.
I guess looking at this Asperger's possibility (though the very slightest case- I cannot in any way equate that to what I see in others with Asperger's) answers, in part, the whole problem, "What IS wrong with Ann?" LOL
I can compare with with 2 of Steve's situations. When Steve was little he was dyslexic. He overcame it through the years even though back then no one knew what dyslexia was. Now Karl, our friend, is VERY dyslexic. He can barely read. It has severely impeded his life.
Steve also has a nerve ending on the outside of his body at the base of his back. Other than the fact that it's been infected a couple of times, it's been no problem. But it IS the very mildest form of spina bifida. I could NEVER compare it to what people who suffer from real spina bifida do.
Hope that clears a few things. Though I'm a little spacey and never wanted to be, I can get through life and maybe even see things with a different perspective. I'm a great editor and I can solve puzzles pretty quickly. And a GPS solves everything.

 
At 7:32 PM, Blogger Ann said...

FYI, those prior comparisons were meant to show slight vs. moderate to even severe cases of things. Steve has two conditions, both very minor, though the dyslexia DID affect him a lot as a child. He got over it and managed to learn to read 5 languages. Brains rewire themselves. Now Karl's dyslexia is severe, and stayed with him constantly; he still has difficulty reading, though he's probably at a genius IQ. He's a well of information. Yet he still can barely read and writing is nearly impossible.
That's how I compare whatever I had, whether or not it was Asperger's, with people who have real situations as adults with this. There is a full range, and if it's on a scale of 1-10, its severity for me would have to fall at a 1 or lower. Whether or not it was Asperger's I don't know, but there was SOMETHING. Maybe not wrong, but just different.

I think the key to so many conditions (not all, but many) is not to try to "fix" the person to make them be like the rest of us, but to help the person adapt and communicate so he/she can contribute to the world from the angle that he/she sees it.

 

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