I had an odd conversation with one of my managers last night at work. I have been having troubles for about the past year, and after some talks with my doctor and tests and monitoring, it appears my autism is progressing... something that isn't supposed to happen, but this is due to a history of concussions and a TBI. There's no way of knowing how much it will progress or how fast..


Anyway, I disclosed this to my manager, and he was very supportive and said they would make whatever accommodations I needed... He also said that he sees me as an inspiration, that my level of functioning is what he hopes for for his son, who is on the spectrum.


It was touching, but at the same time this is why I have such a problem with the term 'high-functioning'. He sees my performance at work, where I am focused, and the tasks and expectations are clearly defined. He doesn't see the struggle to connect with other people, people whom I can't understand and who can't understand me. He doesn't see the all pervading loneliness, the long stretches of days that I often go without talking to another human being unless it is about work. He doesn't see me curled up in the corner when I get home from work with the lights off and my arms around my shoulders, rocking back and forth, overwhelmed from playing this character I have to play in order to 'function'. He doesn't see the fear that even the slightest changes can cause... the fear that has made me distrustful of people I have known for years simply because they shaved their beard off or started dating someone new, and now they they are a different person in my eyes.


It has been three years since my diagnosis and one year since I disclosed it publicly... people know I am on the spectrum, but I am sometimes shocked how little even the ones that understand actually understand.