I recently posted on Facebook the feelings I am having lately. Layers of emotions with multiple causes – such as the APA decision to eliminate Asperger’s from the DSM-V, the year of r, 2012, not ending the way I had hoped, changes in my work I cannot control and backlash from my inability to effectively ask for what I need.
My rant began this way:
My rant began this way:
Want to know what living with autism can be like some days? Take a day in your life -remove 75% of your income, give yourself a headache, give yourself a stomach pain that gets worse when you are presented with food, surround yourself with people who speak broken English and be sure not to look at them when they speak so that body language is removed from your ability to interpret them. Now, in this setting, go to work, make a living, make friends, and if you have some extra time, remember to build your own self-confidence while having someone come in every half hour to remind you that you are a broken human being (this equals the news media bombardment).
Do this everyday until you break. How long would it take for you to give up?
Despite the gifts autism brings, don’t forget that those with autism you view as “mild” or “looking normal to you” operate under a barrage of sensory and social issues that run like a noisy machine in the background of everything we do. Before you lecture someone with autism about choices they make or how hard they appear to be working, you try and live life they way we do.
People have committed suicide from a condition called tinnitus; a condition which causes a constant ringing in the ears. If tinnitus was my only constant sensory discomfort, I would consider myself lucky.
Be careful who you lecture and who you judge. The surface is a cover, not a window.
This was followed by a day of processing as I tried to understand what is happening to me. My days seem to shift from feelings of hope to feelings of inadequacy, with no in between. The confusion has my stomach in knots, causing my diet to run in weird directions as I alternate from starving to hating the sight of food. I hear vibrations, lights are bothersome, and my asthma is a mess. Despite a lower income this year, all is going fairly well – great friends, positive feedback from students, recorded a cd, and published a new book – so, I should be in a good mood, generally speaking.
Then what is happening to me?
I know these internal collisions of emotions are typical in people with autism. Despite my experience and many hours of very helpful therapy, I still get stuck in this vortex – and still seem to never see it coming. Since the general belief is that autistics don’t experience emotions, the training tends to focus on teaching us how to read other people’s emotions. There is no effective therapy to date that helps autistics recognize, accept, and regulate their own emotions – or at least there is no effective one for me.
This is when a flood of questions enter my mind. They are always the same questions:
- Why do I feel I am pedaling hard but going no where?
- Why do I believe that I am destine for greatness while at the same time feel too small to reach my dreams?
- Why can’t I escape this feeling of being trapped?
- What is wrong with me that I can’t have the job and home life I dream of?
Tomorrow I am going to ease my mind by taking a walk in a place that is familiar and full of positive memories. I wish I had a streamlined process that would ease this dark side of autism. There are days…..I just feel stuck.