To I wish I didn’t have Asperger’s,
I am autistic. I spent a lifetime struggling to keep up with a world of people who, without putting in any real effort, can do things that are incredibly difficult for me. I was derided for my perceived inadequacies, while my strengths and accomplishments were ignored or discounted. This went on so long and so frequently, that I internalized these attitudes. I no longer needed anyone to keep me down. I could do a fine job of that all on my own.
I appreciate humanity in all its varied presentations. I love that we are all so very different. I never viewed success as a one size fits all proposition. We all start out with a different set of tools in our toolbox. It only makes sense that the tools at our disposal shape the life we build. I don’t judge people’s worth based on their wealth, talent, appearance, athletic prowess, or any other skill set. I appreciate the accomplishments resulting from that skill set, but I know those accomplishments are not a measure of the intrinsic worth of an individual. Unless, of course, that individual is me.
I held myself to a double standard I could not possibly hope to reach. I apologized when I could not do things as quickly, gracefully, effortlessly, or seamlessly as those around me. I treated accomplishments like raising children of varying, complex needs as minor. I felt shame when I could not make it in the modern American workplace. Even though my children never missed a meal, had suitable clothing, and went to excellent schools, I felt shame that I could not earn a living that afforded them middle class luxuries. I felt shame, I felt shame, and I felt shame.
Only recently, I realized I deserved the same respect and acceptance from others that I give them. It is not unreasonable to hold other people accountable for their attitudes and actions, even when it relates to me. The fact that I struggle with many of life’s day to day tasks, does not negate those tasks at which I excel. I can be proud. I can be loved. I spend every conscious moment of my life in an effort to not hurt others. I seek to lift up those around me. I have nothing to be ashamed of. I suspect neither have you. We are different. Not less, just different. The world fears different, but the world needs different lest we stagnate.
I am done measuring my worth by someone else’s yardstick. I genuinely hope you are as well.
April is upon us again. If you have any connection to the autism community (or the world of corporate sponsorship) you already know this is Autism Awareness Month. You may also be familiar with Autism Acceptance Month. Prior years, I have tried to throw myself all in, ready to share my own, autistic experience, in hopes that I might bring a little more enlightenment into our interactions. I want to make things better because I’m a fixer. I fix things; even things that are neither my responsibility nor my business to fix. It’s what I do. You can thank me later; or tell me to take a hike. I’m equally familiar with both outcomes.
The problem is, when May rolls around, I invariably feel worse about our future than I did the month before. I feel beat up, hopeless, and a little like a circus animal that has been poked with a stick one too many times for not performing in a crowd pleasing manner. This month’s “awareness” puts us all under the microscope, and it’s hard to move towards acceptance when we’re all on edge.
So this year, I’m making a move towards autism acceptance by means of inaction. I’ve got a list of things I won’t be doing. Many of them I’m not doing already, and will continue to not do well into summer. Feel free to not do things with me, or not not do things.
I am not going to Light it up Blue.
This is not so easy for me. I love blue in that obsessive, “I want one of everything in blue” sort of way befitting the height of spectrum stereotype. However, Autism Speaks is an organization I’m not personally comfortable supporting. That does not mean I think you are an evil, foolish monster for lighting it up blue. It simply means we may not agree about this. Still, I’m not boycotting Home Depot over this. I’m already boycotting Lowe’s for other reasons, and my 60+ year old home is in constant need of renovations. Unless I’m visited by home improvement fairies, someone is getting my business. If you want to make the world a little smurfy in support, please have fun doing so. Maybe in May you can ask me about Autism Speaks. Which brings me to the next of my April inactions:
I am not going to discuss causes of autism, efficacy of treatments, or research direction, motivation, or validity amongst members of the autism community.
I reserve the right to let reporters know when they are flat out wrong, but for the whole of April, and perhaps a bit beyond, I’m putting these topics on hold in personal interactions. I feel all this “awareness” cranks the emotions of those of us invested in this community up to eleven. We are going to be bombarded with even more than usual perhaps well-meaning mainstream media articles that will contain more heat than light. It makes me cranky. I bet it makes you cranky. Have you ever had a productive debate with someone when you’re in a bad frame of mind? Perhaps, but it’s not likely. These issues will still be here in May. I can wait.
I am not going to engage parents of autistic children about autism in general.
To be clear, I am talking to parents. I talk to parents every day. I consider the parents I interact with friends, and I don’t ignore my friends. I’ve been parenting my entire adult life as well as having an educational background in child development and professional experience working with children of varying developmental and emotional needs. Parenting is the one thing I truly know, but I need a break from couching this all through the filter of autism. For my own well being, I’m putting my autistic to neurotypical super secret decoder ring upon the shelf. I promise to put it back on when I’m a little more rested. In the interim, expect more talk about baked goods and sports.
I am not going to pretend to be capable of more than I can sustain.
This is more about me than you. I’m not going to lie to you. I’m not just a little different. I’m a lot different, I’ve spent a lifetime trying to act like I’m not, and it’s not worth it. My internal mechanism is wholly different than most people even if the external results are the same, and it’s hard work. I have a developmental disability along with unrelated health issues. I’m no longer ashamed to use the word disability. I know given the right accommodations, I would be more than capable of a career and financial independence. However, I’ve had a life with no such accommodations. In the past, I held myself to the same standards as those around me with no disability. As a result, trying to function in the workplace has been painful. I started out well, even excelled, but I could not keep that up. These failures carried with them a burden of shame, even in the years after my diagnosis. I am done with that shame. Not just for April, but forever. I plan on shifting focus away from my comfort zone of parenting towards the realms of workplace acceptance and accommodation. I promise, if the world is going to benefit from what our future adults have to offer society, the time to be paving that road is now.