Monday, April 09, 2007

Asperger Syndrome

Hello Rob-
I came across your blog in an odd way - I recently wrote a book called 'Strange Son' about my son with autism who didn't communicate until he was nine years old. I have a "Google alert" which looks for any reviews on the book, etc. and I happened to see your blog and the reference to Aspergers syndrome. Did you know you had it before your accident and how long were you in a coma? Your story is truly amazing; I was very moved by your writing and your honest self-examination that you share with the world. I believe that if you can "see" something in your mind it means you can do it. Call it day dreaming, imagination or whatever - the fact that the mind can envision something means it has already happened in a mental form and that means that some manifestation of the thought can take place. Whether that event will take place symbolically, or in real time or "on time" is another story - I am a chronic daydreamer and thinker myself, and I too often show up late and forget to do things because I am so busy "thinking". Maybe that's what writers do and you seem to have a knack for writing yourself. Best wishes to you in all that you set put to accomplish in life,both big and small. -Portia Iversen

Portia, here is my response to your question about Asperger’s Syndrome. Did I know I had it before the wreck? I don’t “Know” that I have it at all. I guess it’s what you would call a self diagnosis. At the level of life we now live there is no access to the medical resources that could produce such a diagnosis. As I pretty much wandered homeless without any medical attention other than the bare basics provided through social service agencies I spent tons of time at the library trying to learn about my brain injury. Some of the staff there showed me how to use the computers I once knew so well, giving me access to the world’s information on any subject. It was then I learned about Asberger’s Syndrome.

The more I read the more lights it turned on. Despite the huge blanks I had most of my older memories remained intact and accessible. So here’s what I know, gained from memories and some evidence found here at my grandmother’s old house. (much of this will be on the timeline I’ve been promising to produce for some time now) My childhood was unsettled to put it mildly. One of the reasons I wish to open up any kind of communication with my dad is to learn what kind of child I was, what were my issues. There is evidence of physical abuse. I found a letter from my dad’s mother to my maternal grandmother, who’s farm I inherited. In it she said that she is concerned because I was evidently having difficulty walking so wanted dad to have my hip or something X-rayed. One sentence plainly stated that she knew my mom had abused my brother and I.

My dad’s mom is the one who “purchased” my brother and I from our mother. I remember her taking me to a place with big tall buildings (as in skyscrapers) where a man talked and studied me while I played with the toys he had. I believe he was the first in a long line of psychiatrists I would be seeing throughout my childhood as my dad tried to get a handle on why I was…whatever I was. That will probably remain an unknown unless dad or my step-mom talk with me. I just know I was a handful.

I remember kindergarten where I would be held in the classroom while everyone else was allowed to go outside and play. Then I was kicked out of kindergarten. That was in Dayton, Ohio. From there my dad was transferred to Spain if I remember it right. I remember Spain well. What a place it was, with abandoned castles and street urchins shooting birds with bb guns to eat and stealing any toys we left out. I also remember always being in trouble, always doing dumb things. My dad one time shared with me how I finally learned to read. Nothing had worked, not the school, not the teachers, not my parents trying to teach me. Then my dad told me that the little balloons on the comic books I would spend hours looking at told what the figures were saying. I then learned how to read in an amazingly short time that confounded all around me.

I still was alone with no friends I can recall. Perhaps I preferred my solitude as I was a constant target at school, the one everybody picked on and made fun of. From Spain we went to England where my dad was stationed at Lakenheath AFB. Again I remember being taken to see the doctors who only talked. How I wanted to play with the boys I saw climbing trees and building forts and stuff. I would sit at a safe distance and just watch. There were times I did but those memories are rare. Mostly I would watch from a distance and spent my time exploring the countryside, marveling at things like the little miniature baby pine cones growing in a tree I had climbed.

I understand I had an emotional control problem, flying off in anger easily. After England we moved to Homestead, Florida. There my problems getting along were amplified as my peers grew older and meaner. I remember running a lot, of a group of kids chasing me on bikes. I eluded them by riding my bike across the golf course, pissing off golfers who’s yelling presence deterred my pursuers. There is so much that I remember here. I got a job selling newspapers on base that lasted a few days at the most. I recall going to the base cafeteria and sitting on the ground pretty much lost on what to do. Lost is a good word for most of my childhood. Just being continually confused and going through life in a haze.

Florida is the last place I remember being taken to the “Talking doctors”. It was there my dad had an operation performed on my bladder with the idea it would stop my bed wetting. It hurt and I still carry a defect from that operation that’s a bit embarrassing to talk about caused by a catheter that was designed for an adult, not a small child. But it didn’t stop the bedwetting at all. That ceased when I ran away from home at fourteen.

From there we moved to San Antonio. With age the rejection and harassments evolved as all things do. Now we lived off base which exposed me to a bigger world, one a little more violent being in the city. I was a tall skinny ungainly kid who was uncoordinated, thus no one wanted me on their team for anything. The only thing I could do well is run. I was held back in the sixth grade not because if my grades but because I was deemed too emotionally immature to be advanced. I spent much of my time being grounded to my room, listening to the television everyone else was watching. I wasn’t allowed out of sight often. To escape I joined Boy Scouts thus giving me a way to get out of the house.

By this time I had found an escape. It was through books. I consumed them at a rate of three or four a week, going through the index cards to read all the science fiction books they had. It got so bad the teachers would confiscate my books when I entered the classroom. I would be so engrossed in a book that the bell would ring and the class leave without me being aware of it.

Tired of getting beat and just miserable in general I left home at fourteen, breaking into the high school where I lived in the gym and attended class during the day. My dad arranged for me to go live with my grandmother here in West Texas. What a different world this was. Nobody knew me so there was no stigma that followed me here. I still didn’t fit in or at least have the social skills to make friends until a guy asked me if the bobby pin I had was a roach clip. “Sure it is” I said not having a clue what a roach clip was. Confident that I smoked pot he invited me out to “Burn one”. I had smoked pot before that my brother gave me but had always been by myself so really wasn’t all that familiar with it. But I was a quick learner, unfortunately.

Now I found a crowd that would accept me, a place where I kind of fit in. I still didn’t have social skills and never did even have a girlfriend. I just stayed wild for that seemed to impress this group. After scoring extremely high on the SAT tests I was given an IQ test. My IQ was rated at 136 despite the fact that I was stoned on pot when I took the test. That is at the bottom end of the genius scale. This just increased the frustration of my teachers. I wouldn’t do any homework, just read the books and pass the tests. If I wanted to learn it I did, however I didn’t like math or English so didn’t try to learn. I don’t know to this day what a preposition is but as you can see I have little difficulty writing.

I was in the tenth grade making up the ninth grade classes I had flunked when I was arrested for stealing a car. I had gotten drunk and didn’t feel like walking home. Yeah, pretty stupid for a smart guy. The judge gave me a choice, join the military service or go to prison. Guess which I chose? This is one of the few times my dad put himself out for me, at least to my recollection. Being a former fighter pilot who was now in charge of recruitment for all or part of Texas he ran the paperwork to get me enlisted. The first thing I had to do was get my GED. Didn’t have a problem with that at all except being shaky on the math. Then came the Air Force entrance exams. I scored so high that I was to be trained to be a crew chief on B-52’s. I’m skipping the things I did and problems I caused in basic training. Things like just walking in the back instead of marching with the rest cause I didn’t like the fellow trainee they put in charge of our unit. Stupid becomes a big catchword to describe the next few years.

I didn’t do well with military life. That is an understatement. I have been rebelling against any form of authority for most of my life and the military life is based on following orders. I was kicked out just as the Vietnam war was coming to a close and the military was reducing it’s force, getting rid of malcontents like me. I was lucky to get an honorable discharge. Didn’t deserve it but am grateful.

From this point things become a life of crime with prison time a part of the equation. I still didn’t have much in the way of social skills so it was the malcontents I was most comfortable with. I was always a target who could be easily manipulated. I just wanted to be liked.

That will do for now. As I said at the start I really don’t know if I have Asperger Syndrome, I just find the following definition a good description of what I remember life being like. There has been a connection with Asperger to early brain injuries such as shaken baby syndrome.
What Is Asperger Syndrome?
By Barbara L. Kirby
Founder of the OASIS Web site (www.aspergersyndrome.org)
Co-author of THE OASIS GUIDE TO ASPERGER SYNDROME (Crown, 2001, Revised 2005)
Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. In spite of the publication of his paper in the 1940's, it wasn't until 1994 that Asperger Syndrome was added to the DSM IV and only in the past few years has AS been recognized by professionals and parents.
Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting".
By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context.
At this time there is a great deal of debate as to exactly where AS fits. It is presently described as an autism spectrum disorder and Uta Frith, in her book AUTISM AND ASPERGER'S SYNDROME, described AS individuals as "having a dash of Autism". Some professionals feel that AS is the same as High Functioning Autism, while others feel that it is better described as a Nonverbal Learning Disability. AS shares many of the characteristics of PDD-NOS (Pervasive Developmental Disorder; Not otherwise specified), HFA, and NLD and because it was virtually unknown until a few years ago, many individuals either received an incorrect diagnosis or remained undiagnosed. For example, it is not at all uncommon for a child who was initially diagnosed with ADD or ADHD be re-diagnosed with AS. In addition, some individuals who were originally diagnosed with HFA or PDD-NOS are now being given the AS diagnosis and many individuals have a dual diagnosis of Asperger Syndrome and High Functioning Autism.
For your information, I've included below a copy of the DSM IV Description. In addition, I've also added a more down-to-earth description that was originally posted to the autism listserv.
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Diagnostic and Statistical Manual of Mental Disorders (DSM IV) Description (p77)
A description provided by Lois Freisleben-Cook
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Diagnostic Criteria For 299.80 Asperger's Disorder
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia
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A More Down-to-Earth Description
by Lois Freisleben-Cook
I saw that someone posted the DSM IV criteria for Asperger's but I thought it might be good to provide a more down to earth description. Asperger's Syndrome is a term used when a child or adult has some features of autism but may not have the full blown clinical picture. There is some disagreement about where it fits in the PDD spectrum. A few people with Asperger's syndrome are very successful and until recently were not diagnosed with anything but were seen as brilliant, eccentric, absent minded, socially inept, and a little awkward physically.
Although the criteria state no significant delay in the development of language milestones, what you might see is a "different" way of using language. A child may have a wonderful vocabulary and even demonstrate hyperlexia (Hyperlexia is a syndrome observed in children who have the following characteristics:
• A precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers.
• Significant difficulty in understanding verbal language
• Abnormal social skills, difficulty in socializing and interacting appropriately with people)
but not truly understand the nuances of language and have difficulty with language pragmatics. Social pragmatics also tend be weak, leading the person to appear to be walking to the beat of a "different drum". Motor dyspraxia can be reflected in a tendency to be clumsy.
In social interaction, many people with Asperger's syndrome demonstrate gaze avoidance and may actually turn away at the same moment as greeting another. The children I have known do desire interaction with others but have trouble knowing how to make it work. They are, however, able to learn social skills much like you or I would learn to play the piano.
There is a general impression that Asperger's syndrome carries with it superior intelligence and a tendency to become very interested in and preoccupied with a particular subject. Often this preoccupation leads to a specific career at which the adult is very successful. At younger ages, one might see the child being a bit more rigid and apprehensive about changes or about adhering to routines. This can lead to a consideration of OCD but it is not the same phenomenon
Many of the weaknesses can be remediated with specific types of therapy aimed at teaching social and pragmatic skills. Anxiety leading to significant rigidity can be also treated medically. Although it is harder, adults with Asperger's can have relationships, families, happy and productive lives.

3 comments:

Carrie said...

I am a dx aspie and your experiences in childhood certainly sound familiar! It's becoming more and more commonly dxed in adults as we're starting to figure out that AS has been around a whole lot longer than the dx has. :)

portia said...

What an incredible story - you are a good writer. Have you considered taking some of these periods of your past life and filling them out with more detail to create short stories ar chapters in a book? Your stories are fascinating and riveting. I found myself not wanting you to stop telling them and was sad to come to the end! Please keep writing, you are quite good at it! One more question - you mention that you had an accident 29 years ago and also that you awoke from a coma in 2001 - are these facts connected? Were you on a coma for that long or were these separate incidents? I am asking now because I am trying to see your story in correct sequence, I hope you don't mind if I ask and please don't feel you need to reply. Thank you so much for sharing so much of your life in story form. Best wishes, -Portia

Bob said...

These were separate incidences who's only connection is they both caused traumatic brain injuries. There have been several such occasions in my life. In 1973 I ran into a car on my motorcycle. I didn't know it then but I had broken my neck. That was discovered with the accident you refer to when I fell out of the tree, breaking my neck and back. The doctors did their X-rays and came in asking "When did you break your neck before?"
Then there was the fall in 2000 when I plunged fifteen feet off the pallet racking in my warehouse. My secretary tells me that I became an "Instant asshole" immediately after. It wasn't long after my marriage problems ramped up leading to the divorce I signed the day before the accident that put me in a coma. I was only in a coma for a month.
Portia, you and for that matter anyone can ask me anything you want. I have decided to live at a level of honesty few would be comfortable with and make my life an open book.
You have joined the growing ranks of those who wish to see a book or books written. I keep saying I'll do so but haven't progressed very far. The things I've seen and done are only hinted at in this journal and indeed are the kinds of things you see in novels and movies. Some of them would be quite shocking to some segments of society. The love story of Cherie and I is the other end of the spectrum. That by itself is a book.
If by sharing my life I can help anyone else I will open that book wide and indeed that is a primary motivation for this level of honesty. The fact that I am alive is a gift and if by sharing that gift I can help others it is indeed a gift worth giving.