December 2nd, 2018
Note: this is much more personal and confessional than the content of this blog usually is. Read on if you are okay with that. Otherwise, check back later.
Sometimes, I worry that I might be becoming invisible. I moved back to the town where I grew up, to the state where half my family has been for fourteen or fifteen generations, and bought a little house. I drive one of the big SUVs that are ubiquitous across the sunbelt. I take good care of it as best I can afford and change its oil in my driveway every 3,000 miles. I vote. I go to church. I do a little woodworking. I have the same kind of block-headed mutt as many of my neighbors. I join things like community bands. Indeed, if I wasn’t a bit unusual in terms of gender presentation, I might be considered very old-fashioned. I’m no one’s mental image of an Autistic adult. I have crushed every stereotype, blown the odds out of the water, and become concerned that big parts of who I am will simply vanish.
Ask most people to picture an Autistic adult and they will imagine someone isolated and unemployed, not someone who can’t stop whining about an I-40 commute. They envision someone living with family or in somewhat restrictive supported housing rather than a first-time homeowner trying to get new vent covers before a possum takes up residence in the crawlspace. Any number of people I routinely interact with now don’t know and don’t have occasion to find out. By any measure, I’m well-integrated, the best case scenario. Does this mean I will fade into the general population and disappear?
Becoming, and helping others to become, free and independent was the goal of everything I have done up until this point. I fed my adolescence and young adulthood to the cause of self-determination. Now, I have those things for myself. No one is in a position to stop me from going as far as my abilities and work ethic will take me, and no one can prevent the occasional cheeseburger and beer scattered in among my mostly responsible decisions. This is the kind of life that should be available to everyone. It should not be an unusually good outcome for Autistic adults.
Unfortunately, it is. My days are filled with reminders that what I have is uncharted territory for many of my Autistic friends. Rarely does a week go by without a GoFundMe cropping up in my Facebook feed because a friend or acquaintance needs money to cover an emergency, or, worse routine living expenses. People I respect as much as much as anyone else in the world tell me about the indignities of getting benefits, how they are shamed during the application process even when they unequivocally meet the criteria and need the help. It’s hard to putter around in my yard, cook a meal with expensive, fresh produce, or trawl Craigslist for fun cars I might just be able to afford in a few more years without a sense of dissonance and lingering guilt.
I donate what I can, but the wider, neurotypical society would consider my means fairly modest. When I am able to help, the anger I feel while I enter my credit card information is visceral. I can feel muscle tensing and heart rate rising as I add duct tape to a social safety net that needs an overhaul. I listen when I can, but my emotional resources have limits, too. Sometimes, I want to spend my spare limited time and money on lighthearted pursuits. The question of how much fun it is okay for me to have while friends struggle to cover the necessities is one that defies an easy answer. I suspect I will grapple with it until such time as more of the Autistic community has a dignified lifestyle or until the end of my life, whichever comes first.
I socialize more with neurotypicals than in the past because the life I have now brings me into contact with them. I enjoy these new friends, but these relationships present their own problems. My disability rarely comes up in conversation. Unless someone has occasion to Google me, new friends may not find out about an important piece of my background and large swathes of my social life. Even people who know I’m Autistic, or would be completely supportive if they did, are mostly not in a position to understand my other world. Subject matter that is enough a part of daily life to come up in casual conversation among my Autistic friends, with their high poverty rate, might be considered too sad or disturbing to mention around neurotypical ones.
I don’t know what to do about any of this except try to be visible, give what I can, keep working toward a world where fewer of us live in poverty, and engage in conversation about the obligation of those of us who are doing alright to everyone else. The size of that conversation will certainly grow as access to jobs and education continue to increase. If we are sufficiently successful, what I have will be more normal in my lifetime. These questions will largely expire. Until then, I will do my best to put down roots without becoming invisible, to be both Autistic and a valued part of the circles I run in now. I will think about how I can use what I own to display both with pride. I will set financial goals for giving as well as things like retirement. I will keep in touch with others asking in the same questions in hopes that we can find some livable answers, if only slowly, in living.