Several years ago, while setting up my (now gone) website business, I became aware of certain things happening to me I could no longer ignore. I began to repeat some tasks over and over again, forgetting that I had just done them. Noticing that memory problems and being around people was becoming more and more difficult. The more I tried to be social the more anxious I became and I began to have serious panic attacks.
I began to believe I had a neurological condition of some kind because of serious memory issues I was having. I had a MRI, full endocrine panel and genetic screening. The MRI and endocrine panel were okay but the genetic screening produced an abnormality consistent with Asperger’s Syndrome. When I began to research what Asperger’s was, my life slowly began to come into focus.
After pursuing several avenues in Texas for a diagnosis with no avail, I flew to Boston for testing from a team of neuroscientists and neurologists who diagnosed me with Asperger’s Syndrome, Non Verbal Leaning Disorder and Dyscalculia. Now, you may be asking “What does all this mean?”
The answer is not simple.
To people who have known me, it will begin to answer some of their questions. Questions they may have had, like “Why did I keep disappearing from high school?” The answer is that when you combine the pressure to be social in a large group with the fact that no matter how hard I tried, there were things I could not learn while at the same time, I had knowledge of computers far beyond what most people did as well as a reading and language skills at a college doctorate level.
I tried to explain to teachers that by the time I returned home, I had totally forgotten how to do my homework nor could I remember the next day what we had done in class previously or with any routine clarity. It was impossible. I was lost and I was scared. The more I struggled the more they classified me as a discipline problem and I finally just walked away. (If any of the administrators, at any of these schools, had taken the time to properly screen me for leaning disabilities, my life would be completely different today.) I got my GED and went to college but the same problems plagued me there and I eventually had to quit. Having an encyclopedic memory about some things, usually only one or two topics and then sketchy and inconsistent memory for most others is unfortunately a huge indication of Asperger’s.
I used to hide some of my forgetfulness and the problems I was having with executive functions by insisting on confirming before going over to anyone’s home. I avoided all large groups of people as they were most times overwhelming. When I was feeling overwhelmed, I refused to take phone calls or answer emails.
One incident that comes to mind was a summer journalism camp at the University of Texas. I felt somewhat uneasy upon arriving and as the first evening progressed I felt myself moving into a panic attack. Although I did not know it was called a panic attack at the time. I could not understand why I felt this way. While at dinner that night, I finally caved. I felt I had to run, as if the building were on fire. I phoned my mom who rushed to pick me up and I sneaked out of the building. It took me two days of quiet and isolation to recover. I never understood why this happened but it felt like a heart attack.
Another incident occurred after I went out with two separate groups of friends on two separate days, back to back. Each was a heavy social interaction, in a heavily populated place. After coming home and going to sleep I woke up in the middle of the night, and again I thought I was having a heart attack. My entire body was shaking. Once more, I could not explain what was happening but the only thing that helped me calm down was to disconnect everything including my computer for a month. It was too much social interaction over too short a time.
My personal life was a disaster and so was every other area of my life. This condition makes work extremely difficult. (People with Asperger’s have ~80% unemployment) It is absolute torture to know so much about something and yet be incapable of using that knowledge in a productive way. To crave human contact even though you know it is literally making you sick.
My life is in a very troubled and embarrassing state and it is for these and several other more personal reasons that I have maintained my prolonged silence. However, I am now aware my invisibility and reclusiveness may be helping me on one level, it is killing me on others. Therefore, I am taking the risk of making public what has been happening to me over the past nine years.
This only begins to cover what has happened as I can not put nine yeas into one post. Those who know me will have questions and I can answer most of them in time. This is going to be long process but as of today, I am slowly coming back.