In my own personal experience, and in my chats with other adults with ACC there is observed a pattern. Many of us are capable of learning vocational tasks, other tasks, scoring highly on them in a controlled situation, but when asked to perform the task unsupervised in the "real-world" we fall short of our demonstrated ability. This was/is especially true of me.
Fresh out of high school, I decided that I wanted to attend EMT school. The classes were for 4 hours on a Saturday morning and afternoon, 12 weeks total. I scored very highly in this training, and I remember being very proud of it. Yet, I only had one EMT job, lasting all but a few weeks. This pattern has continued throughout my life. During my interview with Dr Lynn Paul, I was asked "why did I think that was?" As I am not the doctor I can only guess, but in my experience it seems that I lacked the organizational skills to perform the needed tasks at hand.
I remember, very early on in my experience of trying to work, that no matter what I did, what kind of work I performed, my mind was "off somewhere else" not wanting to attend to the task at hand. If the job was 9am-5pm by 10am I was already thinking about what I needed/wanted to do once I got out of there, and all I could think about was getting out of the task. I have always had an obsession with "not having enough time." I can't tell you having enough time for what, just that "I don't have enough time."
Even though I trained as an EMT, immediately on the job I found I could not manage the many tasks needed to be done without constant prompting. Unfortunately, such prompting is not available in most adult work tasks. I went from job to job to job for a couple of decades...beating myself up with the thought "I'm just not trying hard enough." Being told I was "lazy" and "didn't care enough" and "not applying myself" (still don't even know what that last one means. Thing is, even today, if I am not prompted, I just kind of wander around in my mind and thoughts.
I also have great difficulty switching tasks. What I mean is this. I was told "you need to get this done" so I would apply myself to it and work to finish it. Then a contingency or change would happen, I would be expected to put aside the task I was doing and begin the new task, going back to the old one later. This is really difficult for me. Kinda like a freight train jumping tracks is how I experience this, but without the track switches, I'm just supposed to sort of "jump over here now and do this." So, while on the one hand I need great concentration to stay on track, I am very resistant to switching tracks. This is not a "willful" resistance, not "no damn it, I'm not going to do it!", I would rather describe it as a confusion, a frustration.
Before I was put on SSDI, I had several dozen job attempts...sort of does away with "not trying hard enough", don't you think? Even after I was put on SSDI and didn't understand my ACC I spent years just trying to find "the right job", that magic bullet that would allow me to be "just like everybody else." I caused myself so much unnecessary pain and suffering doing this. And then I had to deal with Vocational Rehabilitation. This was an awful experience. They never were concerned with finding me a job with the right fit, what I could and couldn't do, what I could stick with, they were concerned with their numbers and results. By the age of 40, some 15 years (I'm guessing) after I got on SSDI I used up all my "trial work hours." It would be impossible for me to try and go "back" to work now, as I would loose major benefits.
I want to stress, I want you to all know how incredibly painful this experience, this subject is for me. Even now at 52, diagnosed with ACC, supposedly "knowing better" I still have my father's voice in my head beckoning "why can't you just be 'normal' like everybody else?" "Normal" is something, I'm afraid (rhetorically) I will never be. Yet neurotically, I will often still pretend and behave like such a thing exists.
After decades of failed job attempts, I think the longest I ever kept a (part time) job was 6 months, my self-esteem has suffered incredible blows. I know better but I still judge myself about what I can't do.
After being diagnosed with ACC, I have worked hard, but in a different way. I'm learning to be ok with who I am, with what I cannot do. And (I know, don't start a sentence with "and" surprise of surprises the more I accept my limitations, the more the gifts I do possess come to the forefront. The most obvious example is this blog. It is the single-most coherent and consistent effort of mine to do anything, that I have ever accomplished in my life.
I know that I am just one person with ACC. And, if you've seen one person with ACC, you've seen one person with ACC, but it is my hope that the sharing of my experience can open up my world to others, to parents with ACC children and adolescents, and other adults with the disorder. I "think" I'm doing a good job at this.
I'd like to say that I'm convinced had this disorder been recognized (and understood) as it is today when I was younger that proper intervention may have provided me a different outcome. I know many ACC adults that struggle with work, but many of them do much better than I ever did. This is why I am stressing "I am just one person with ACC." I just hope that those that are like me don't have to go through the self flagellation and deprecation that I unnecessarily put myself through for far too many years.
In many ways I remain emotionally immature. I feel exactly as I did as young teenager running around the halls of junior high school (like I was ten years old.) I don't quite have the same grip on "real world responsibilities" that others do, that even some ACCers accomplish. I remain bitter, when I hear and see of other ACCers who are accomplished in the work world. I know I shouldn't be, that I should be happy for them, grateful that they succeeded where I only fail, yet I am still reminded every day when I wake up that I don't have "purpose" in the world as other people do...and it makes me incredibly sad.
|The Protestant Work "Ethic"|
I'm sure there are other aspects of working and keeping a job (trying to) that I could write about. Other ACCers seem to be more successful at it than I, perhaps ask them. If there are other aspects that I haven't covered that you think I can, either leave me a comment here or on one of the ACC support groups, and I'll answer if I can.
Thank you for spending time looking into my mind...