Sunday, December 28, 2008

Cannoli Numero Due:Einstein, Gates, My Son and Me

You are probably wondering, what does Einstein and Gates have to do with my son or myself. Nothing on first blush as Einstein developed the Theory of Relativity and Gates is the founder of Microsoft. There are two reasons I picked these two gentleman: One, they are well known in both their fields and society as a whole, and two, they both had/have Asperger's Disorder. That is not to say I compare any of my kin or myself to the capabilities of either of those two great men at all, but that Asperger’s is something that some famous and successful people have had and it is not some rare disorder that relegates people to the freak show.

What of it you say? It's an interesting disorder, and my 13-year-old son had been formally diagnosed with it in 1999. I also have a three-year-old daughter that has it as well. Out of five children I have, two definitely have it, and the others show variations on a theme, but seem to function better than the bookends, my three and 13 year olds.
You may be asking, what is Asperger’s Disorder? I provided a link above, but I will give a little detail here:
In General, people with AD have problems with:
• Socializing with Others
• Thinking
• Emotions
• Intense preoccupation with one or two topics
• Repetitive routines, behaviors and movements
• Play
• Speech and Language
• Motor Skills
• Sensitivity to sensations of sound, light or touch

More specifically, to break down the above into finer detail:

• Prefers to be by themselves
• Unaware how his/her comments or behaviors affect others
• Does not seem influenced by peer pressure, fads, trends, or pop culture
• Inability to interact with peers
• Lack of desire to interact with peers
• Poor appreciation of social cues and body language
• Limited facial expressions
• Socially inappropriate responses
• Seems uninterested in what others have to say in conversation
• Does not ask others questions or their opinion
• Makes limited eye contact
• Limited use of hand or body gestures
• Does not look others in the eye

• Impressive long term memory for facts
• Seems almost obsessed with a particular topic
• Expects other to understand what he/she thinks without telling them
• Does not ask for clarification when confused
• Cannot imagine what others are thinking
• Cannot interpret other’s intentions

• Does not understand how other people feel
• Extreme reaction to minor upsets
• Fails to modify emotional expression to match the situation
• Feelings are all or none
• Cannot read emotions of people’s faces

Intense preoccupation with one or two topics
• Fanatical about his/her interest
• Seems obsessed with interest
• Talks incessantly about his/her interest
• Little Interests in other topics
• Pursues advanced knowledge about his/her interest
• Shows off knowledge in almost encyclopedic manner

Repetitive routines, behaviors and movements
• Sticks to rigid routine
• Difficulty being flexible
• Imposes routine on others
• Needs excessive reassurance when change takes place
• Upset by changes in routine
• Repetitive and senseless body movements

• Seems not to understand how to play/work with others
• Does not know unspoken rules
• Often prefers to play/work by him/herself
• Uses playmates as objects
• Intense reaction if things do not go his/her way
• Controlling of playmates
• Difficulty sharing
• Lacks imaginative play

Speech and Language
• Interprets things literally
• Does not understand figures of speech or metaphors
• Has an unusual tone of voice
• Talks in an overly precise manner
• Uses advanced vocabulary
• Odd Rhythm
• Peculiar voice characteristics

Motor Skills
• Poor coordination
• Poor ball play
• Odd gait when walking or running
• Poor handwriting

Sensitivity to sensations of sound, light or touch
• Overly reactive to sounds
• Overly reactive to lights
• Overly reactive fabrics
• Overly reactive to textures

The thing to remember is that AD is an disorder in the autistic spectrum and thus it’s not quantitatively exact as to whether or not someone has AD or not particularly that someone has to have every symptom listed above, but needless to say it would be in the gross majority that present themselves to some degree. Both my children that have been diagnosed have some differences, but more similarities. My son did not speak a word until he was four years old. My three year old can sing and talk some sentences, but most things are words and phrases.

So you are saying, what of it that The Right Guy’s two children have been diagnosed with AD? What I find interesting are the familial connections. Contrary to popular hysteria, I do not believe that AD is caused by thimersol in vaccines. In my case I can definitely see a family history that indicates a genetic link. There are behaviors that both my kids have done that the youngest could not have learned from her brother, as he hasn’t done them since he was small and she was yet to be born. The other thing is that I have family members that have exhibited AD symptoms. My father’s older brother (I would even say their father as well), my father, my brother and myself have all exhibited many of these symptoms. It wasn’t until I started reading The Asperger’s Answerbook, by Susan Ashley Ph.D, that the concept of familial connections really sunk in with me.

You may be asking, why now? Why talk about it now? Well, because I feel like it, and I feel that since armed with some knowledge, coupled with circumstances, I feel I needed to say something. I can tell you that in my dad’s day there were absolutely no resources for people with AD. Kids with AD probably dropped out of school, never married, and lived relatively solitary lives (even being married with children, I often feel lonely and solitary). My dad did not marry until he was 33 and my uncle never did. I myself was 32 and my brother was 36. In my day, schools did not have special education other than for those that were mentally retarded, and they were sent to the Rose Marie Kennedy Center. In some ways I consider myself fortunate that I went to a parochial school where it wasn’t as socially competitive as public school. In some ways that is bad because what I didn’t experience right off I got to experience in ninth grade when I transitioned to public school. Even then, in 1977, no one really knew what AD was or what to do with it. In fact, it wasn’t formally classified until 1994. The good news is that for people like my kids, there are programs in school that will help them with socialization skills, as well as academically.

Still, my fear is that while my kids may have a somewhat normal life, is that they will not be happy and at least better adjusted than I am. It does pain me to think they will go through some of the same social issues I did and continue to go through. All I can tell you is that I don’t have to watch the X-files to know what it is like to feel like an alien. It’s one thing not to fit in and another to realize it and even yet another degree to not be able to (or want to) learn as quickly or permanently social rules and unwritten rules that govern human interaction, particularly when it comes to being employed. I have always screwed that up and it has had a direct negative effect in my careers. In my father’s day, the expectations were different. Interpersonal interaction was secondary to getting the job done. The other thing is my dad and uncle worked at jobs where they did not have to interact with a lot of people. For people with AD, today’s work world is much more tortuous because of the alleged necessity for any position to require people to be a “team player”, and have “good communication skills”. Because of these social deficits, people with AD have been relegated to positions that are usually below their mental capacity and in some cases from attaining comparable success in a particular position. On top of this, this, they have a much higher incidence of depression, probably due to the social issues. Below are listed some issues people with AD have with work:

• Finding work at level of education/ability
• Keeping a job long term
• Getting along with co-workers
• Sensory overload
• Coping with the unpredictable
• Learning the unwritten rules of the job
• Failing to ask for help or clarification
• Socially inappropriate behavior
• Misinterpreting others words/actions
• Easily frustrated
• Multitasking
• Time management
• Presenting well in interview
• Inability to work in a group
• Inflexibility
• Need for excessively precise expectations
• Poor organization
• Difficulty remembering verbal instructions

A lot of these issues are familiar to me. While I would like to do better, at the age of 46, I consider myself pretty much done. All I will accomplish is what some would call sandbagging, thereby holding on for the end as it were, which isn’t a bad thing I guess, but disappointing nonetheless. My wish here is that if you suspect that someone you know might have AD, try not to judge too harshly and it might do you well to get a book like my wife got. It will give some strategies in dealing with it, and it will also give insight as to what AD is. While I am no Einstein or Gates, I’d still like to do better than dad did, god rest his soul. Einstein said insanity is doing the same thing over and over, yet expecting a different result. May be I should give it a rest. At some point, you have to say fuck it.

Ashley, S. (2007) The Asperger Answerbook. Soucebooks, Inc, Napervile, Il

Thank you for reading this blog.

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