I have for years considered myself to be burdensome on my wife and now even my children. I have believed myself lazy and stupid, worthless, and better off dead. I still struggle regularly to see myself differently.
Despite having argued continually for some time against “high” and “low” functioning labels when arbitrarily applied to autistic people, the pervading influence of the ideas underscoring them has had a profound effect on the way I see myself. It is, in fact, very easy to internalize the assumptions of non-autistic people without ever consciously intending to. When I can hide who I am reasonably well at work, in public, it is easy to believe that maybe there is nothing wrong with me at all. In all honesty though, I’m not as good at hiding as I sometimes think. Coworkers I see regularly know well that I’m often very quiet and not social except in small amounts and with as few people as possible. And even these minor social “responsibilities” are enough to fill my social quota for the day.
But I still struggle internally with accepting that autism (and ADHD, though still undiagnosed) does in fact disable me in a number of ways. This is not because I don’t actually believe it is a disability. Rather, I see my son, the only other autistic person I personally know, and how his obvious disabilities present a challenge for him that I’ll never experience. This is not revelatory. The autism spectrum includes those with high support needs, some who’ll need support for the duration of their lives, as well as those who can live independently without assistance. But on that last point, that I can live independently without assistance: this is, I now understand, just not true. Yet, there is a pervasive myth surrounding the notion of living independently, a myth often maintained by parents of children with the highest support needs: that living independently is the single most important achievement for disabled people. That this is so desired is simply a reflection of the society in which we live: where the disabled are perceived as unproductive and financial and emotional burdens on families. Disabled people have been fighting for decades now to live independently, but this independent living movement is one of self-determination, moving beyond the previous century-and-a-half-long era of warehousing in institutions. It is not about any notion of living independent of assistance.
But really, living independently is pure fiction, an invention of individualist American fantasy, like the bed-time pull-yourself-up-by-your-bootstraps stories. No evidence exists to show that anything close to a majority of Americans will experience significant upward mobility in their lifetimes. Likewise, most people do require some form of assistance at some point in their lives, if not most of their lives. Nobody truly lives independent of everyone and the world around them.
If you have to borrow money from parents or other relatives or friends or in the form of a bank loan at some point in your life, you do not live independently. If you have to pay for living expenses or other essentials using a credit card, you do not live independently. If your car breaks down and you have to rely on family or friends or coworkers to get to work because you can’t afford to get it fixed right away, you do not live independently. If you cannot afford to pay out of pocket for college education, you do not live independently. If you work for a wage or salary, you do not live independently. Put simply: almost nobody actually lives independently. And yet disabled people who require daily assistance are often vilified as burdens. These ideas are so omnipresent that I have over many years internalized the belief that I am myself a burden on my wife and family.
I met my wife online back in 2001. At that time I was miserable in high school. I had a few good friends all of whom had been my brother’s friends first. To this day I have not been able to maintain a lasting friendship that I made entirely on my own, my wife aside. She is the most important person in my life aside from the few friends I still have.
I highlight this in light of the fact that I think frequently about what my life would look like were I on my own today. And it’s honestly overwhelming to think about how much I’d be struggling given how much I struggle now. My depression has at times become so severe that I’d spend hours in a day thinking about how worthless I was, how much better off everyone would be without me, and how killing myself would take away the pain.
Nearly my entire twenties was spent working jobs and trying to get through college. I have yet to succeed in either a job or college. After nine years spent going from one college to the next, six schools in all, I dropped out when I was a semester away from finally graduating with a bachelor’s degree. This was the result of the government cutting my student financial aid off, forcing me to have to pay out of pocket for my last two semesters. That was the end of that, and after nine years I was saddled with tens of thousands in debt with nothing to show for it.
I had not the slightest clue that I was actually autistic. I was certainly depressed, had been since high school. But that there was something else was a thought I generally suppressed, preferring to assume that I simply failed to try hard enough, was lazy, was trying to manage too many things at once. Indeed, I was trying to manage too many things. I often appeared to lack basic living skills, like self-organization of any sort, at school as a student, at home keeping track of money owed, be it bills, credit card payments, or just basic budgeting, and I seemed to have no sense of time constraints, constantly putting off required work in favor of doing what I preferred to be doing. I seemed to have no ability to maintain a basic schedule, constantly forgetting about responsibilities I had been told about recently because I never wrote anything down, assuming I’d remember it. My wife was frequently angry over her having to organize everything for me, like all my financial responsibilities, keeping the piles of bills I received in the mail in one place because once I saw it, I never opened it and would eventually lose it or throw it away with nary a thought to the consequences. To her, it seemed like she was having to take care of someone who had never grown up.
I’m overwhelmingly intellectually-driven. Put me in a situation where I’m expected to use my hands to work or build something and I’m likely to be lost. I have to have things shown me several times before I get it. Before I do anything, I have to think about it first. I approach everything from an intellectual standpoint, which makes me appear aloof and lacking “common sense.” I am not “street smart.” I am often naive to other people’s intentions, often assuming that most people mean well as I myself always try to do. I do not read people, do not look for their non-verbal cues, seem almost clueless to body language unless it’s obvious the emotions or feelings they’re expressing. My naivety has led me to be taken advantage of by others countless times and because I go out of my way to avoid conflict, I’m often the easiest of all pushovers, not wishing to fight or have to defend myself.
Moreover, my need for structure and routine was seemingly only subconsciously understood, or entirely misunderstood. One of the reasons I have struggled at the jobs I’ve worked is because of the lack of structure. Having different times several days a week to go in and leave work never allowed for a set routine, which I otherwise thrive on. Not always being able to leave work at exactly the time I was scheduled was and remains maddening to me. I cannot stand being unable to abide strictly by the times that are set, and jobs where the shift hours differ from one day to the next never allow for any kind of consistency. I abhor spontaneity, and being given other responsibilities outside the primary scope of my responsibility takes me away from the work I must complete within my set time constraints. For example, working in a grocery store and having to work in multiple departments outside my own within a shift throws off entirely the routines I develop working within my usual department.
I am rigid and inflexible by nature, but expected to always operate outside those bounds.
I could never take notes in my classes or keep papers and assignments organized in any discernible way. I am a single-tasker, so I am unable to listen to a professor while simultaneously writing down what needs to be copied for later use or reference. Alternatively, I cannot write down things on the board and simultaneously listen to what the teacher is explaining, which made math classes a nightmare. So I often took no notes. My brain seems unable to competently perform more than one task at a time. I often didn’t even write down due dates, thinking I’d remember them. Sometimes I didn’t write anything down because I didn’t need to, especially in my areas of interest as I often read obsessively, being way ahead of other students. I did not go to parties or drink or do other things associated with college life. I spent all free time in the library.
I now understand a lot more about myself than I ever did before. Previously I attributed all my problems to sheer laziness and stupidity. I saw myself as mildly intelligent and capable of the same work or better than that produced by classmates, and yet I couldn’t figure out why I seemed to be struggling so badly by comparison. My wife similarly worked a full time job while completing her degree, and she now has a master’s degree. Why did I end up in such differing circumstances compared with her despite similar capabilities? Why do I chronically seem like a grown-up child, unable to take care of himself? Why am I not like everyone else? Why do I insist on wearing the same clothes all the time? Only grey and navy blue, that’s it. Why am I always getting in trouble at work for failure to maintain compliance with uniform and grooming policies? Why am I so often late to work, to the point now where I have been suspended twice without pay and on the verge of termination.
In short, I need help. I am not afraid of admitting this anymore. I desire structure so much that I’ve often thought how much simpler life would be were I in prison where there is a guaranteed schedule to abide by, set in stone, freeing me to do what I wish and do best: read and think, without the need to think about when to feed myself, when to take my medication, when to shave, when to prepare my uniform for the next day. Indeed, my wife has to put up post it notes in more than one place in our home to remind me to take my medication which I chronically forget to do. Even the post it notes fail to work on occasion, but do help me stay on track generally. My wife has to remind me to set out my uniform the night before work. In fact I prefer working a job with required uniforms, takes the guesswork out of choosing which grey or navy blue shirt to wear.
The fact that I must rely on such structure and predictability and routine has led me to internalize feelings of being burdensome to my wife who has no need for any of it on the level I require, and who must look after my basic needs and responsibilities, and who must budget our finances to ensure I don’t run us into the ground with my impulsive spending habits. I often can’t help feeling like a child in his thirties, needing to be told how to take care of himself and organize his life. I have spent countless hours alone over the years in tears believing that I don’t deserve anything I have, that I’m worthless, hopeless.
And things have not gotten easier with my children. I found myself overwhelmed when attending my son’s IEP meeting. Sitting surrounded by seven other people at a table is overwhelming enough. That many people makes it difficult for me to even speak up even when I have something to say. My wife is able to keep track of the paperwork seemingly without an issue, and I’m still amazed by this. All the endless paperwork is kept neat and organized in a binder, from his early intervention meetings, to medical bills, to Medicaid and everything in between. I marvel at the phenomenon of the binder. All of my own endless paperwork and documents and bills and everything else is kept neatly organized in a piece of furniture with two drawers designed explicitly for the purpose of organizing papers. It is unbelievable to me. I can’t imagine the disaster I’d be in were I expected to organize everything on my own. Just the fact of needing to make a phone call is enough to shut my brain down.
Why can’t I just do my job like everyone else seems to be able to do? Why can’t I just pick up on things intuitively without needing extra time to process and think through it first? I know now why I am the way I am, but it has taken a long time now to accept that it is not stupidity or laziness.
I have a disability. And yet it’s amazing how I feel that when admitting this I must qualify it with but that’s not meant as an excuse. Why must disabled people with much greater challenges than I be seen as burdens when so few people actually live entirely independent of the people and world around them? Many require support in one way or another, some very significant support, but support is tied to notions of dependence. Non-disabled people are not vilified for their lack of total independence because they require much less accommodating by means of producing to “pay back” the burden they place on the state, family, or the bank. A society which values above all a person’s productivity is a society that must create disability, that must invent a separate cast of individuals who are perceived as less than others and less deserving of assistance on account of their inability to recoup the cost of the burden they place on everyone else. An individual only has dignity insofar as they work to maintain another’s wealth. This is why capitalism is so profoundly inhuman.