Being diagnosed as autistic is one thing. Learning to live in everyday life with autism is quite another. Here is an important lesson that I am trying very hard to acquire. My very survival depends on it. And if you think I’m exaggerating, consider this…
There is a myriad of prejudice surrounding the subject of autism, its probable causes, its treatment options available, their effectiveness, the possible or impossible workplace integration of autistic individuals, their access to education, to a successful love life, or the possibility of a social life. We’re talking about it as a brand new phenomenon or as the diagnosis du jour whenever we fall short of finding a plausible explanation for a different behavior pattern.
We’re experimenting with new concoctions to find the miracle drug that will reduce or rescind its symptoms. We create new education programs to promote “normal behaviour” and integrate children to society to ensure they become productive and independent members. We discuss their problems, we send them to therapies, we compare them, classify them and we want to cure them to alleviate their suffering.
But the question is: who is really suffering? As I am discussing with members of my own family, with work colleagues, and as of recently with professors and fellow students, they mention my disease, my condition, my issue. Words do matter. Where is my problem anyway? I do not suffer from a disease, nor am I afflicted with a condition.
I was born autistic, and I will die autistic. It’s as simple as that. I am who I always was, I didn’t change, and I didn’t become more autistic then I ever was prior to receiving the official confirmation on a piece of paper. Period. What changed is my perception of the world around me, of who I really was, and the realization that I have spent most of my life underestimating my abilities and potential. What also changed, is my naiveness in believing that people were actually interested in understanding. We expect that autistics will learn the tools necessary to adapt to society at large, because being different is being defective.
My refusal to use chemical means to regulate my mood is perceived as a denial over a logical solution to my issues. As far as I’m concerned, it is often in moments of deep introspective reflection that I come up with the most brilliant ideas, and in the clearing of the mind after an overwhelming stream of tears that my vision and dreams become more apparent.
People are constantly making comments about my unstable mood, about my being too sensitive to criticism and that I look stern. Yes, my moods vary and it is easily detectable in my face or body language when I’m frustrated or having a bad day. So what? I’m not a hypocrite, what you see is what you get. Yes, I am sensitive to condescending criticism when you think my opinion on a subject is any less valid than yours or when I feel that I am being treated unfairly. I am honest and fair, values that I fear are becoming extinct in our day and age. And yes, I look stern, and I am sick and tired of trying to explain that the neurons controlling my facial expressions just function differently. I have to make a conscious, intellectual effort to chose the correct expression to put on my face. It doesn’t come naturally for me. So, if my brain is busy thinking of something else, my facial expression might remain on “neutral” until I realize I have to change it. There you go, end of explanation.
My desire to acquire and develop new skills to reach my potential and realign my career from numbers to words, with the ultimate goal of working from home where I can control my immediate environment, is also being put under scrutiny. Midlife crisis or necessary adaptation for my intellectual survival? I was once again too honest about expressing my dream of adapting a new lifestyle to meet my needs.
I’m very good at my current job as a risk analyst and would be considered a model employee if it were not that I demand a reasonable adjustment to my current work conditions to function better. I am very detail oriented and can decipher discrepancies other, more experienced underwriters would miss. My focus is seriously compromised though in an environment where visual, auditory and olfactory distractions are repetitive and constant. I should simply accept the fact that I have to sit in an open, heavy traffic area, surrounded by over perfumed gossipers, because, after all, I’m the autistic one, the one with the problem of being too sensitive.
I must admit that I am a bit confused with the mixed messages I receive. On one hand, I’m being told that my coming out with being autistic is a courageous move (I’m simply stating who I am, no courage involved in that statement), and I’m told that I just have to ask for help and support (see the visual effect here: head to the side with hush puppy eyes), followed by prejudiced comments I won’t dare repeat. Being different is being defective, they made it quite clear. On the other hand, they view my academic endeavour as a clear break with my actual job, they write me off from the annual planning as if I were already gone, and they justify the inertia to respond to my request for a better suited work station with the statement that I will be gone in nine months regardless. Really? Did I really confirm that I was leaving? I had no idea that the decision to write me off had already been made before I even had the chance to schedule my classes and see how many hours I could still devote to work.
Therefore, it seems, it is up to me to come up with an action plan. Apparently, I have to find a new job come September because it was already decided for me that I would no longer work where I am. In the meantime, I must have a irreproachable performance, meeting all the targets I was assigned, regardless of the obstacles I encounter, because, after all, it is my problem. I must also have a great, positive attitude, smile from ear to ear (maybe a reminder on my phone would help). After all this great pretending, I have to find enough energy to go home, deal with homework, be a good wife, figure how Martha Stewart could do it all, cooking and organizing (I hope she was able to rest a little in jail, poor overachiever), exercise for better sleep, call my friends and family to catch up and tell them how wonderful my day as been chatting with the over perfumed gossipers.
Sorry for all the neurotypicals reading this, only an Aspie can understand how ridiculous such an action plan would be!
Despite all the frustrations experienced facing the misunderstandings and lack of interest, and the pressures to conform to the “norm” (defining normal is an impossible task), and regardless if the obstacles in my way were set on purpose or not, I will not be sorry for who I am, with my mood swings, my great sensitivity and my stern expression.
I was born autistic, and I will die autistic, that is who I am.
Being different is NOT being defective.