The truth about my life is, to me, straightforward. But it is also, as it is for most autistic people, unusual. It has a couple of points in which I’ve traversed some developmental trajectories that are unusual even for autistic people — although not as unusual as I’d expected. But I am still afraid whenever I tell anything but a few parts of the truth about my life.
I have spent a good deal of my life institutionalized in one form or another. First I was institutionalized in the ordinary way most American children are institutionalized, which is to say I went to school. School is a surprisingly good training ground for the next kind of institution I wound up in, the kind with locks on the doors, Thorazine, restraints, and seclusion rooms. After that, I was institutionalized in ways that, while the power dynamics were exactly the same, took place without locks on the doors. These last places not only presented the false front of not being “true” institutions (when in fact they were), but left me permanently uncertain about when, if ever, I was let out of institutions for good.
I have spent a good deal of my life, within all of these settings, being told who and what I am. I have spent a good deal of my life under the direct control of people who told me who and what I am. These people have had absolute power over me up to and including whether I live or die. They have told me that I am not thinking what I am thinking, feeling what I am feeling, or experiencing what I am experiencing. They have looked at my outsides and filled in the gaps with their own prejudices, then tried to force me to conform to their prejudices. They have trained me to second-guess every thought in my head, to say that true is false and false is true.
Whenever I speak about the day-to-day reality of my present life, or certain aspects of my past, ghosts come out to haunt me. They feel real. Sometimes, with the help of flashbacks, they even look or sound real. Sometimes they superimpose themselves over real people, people I know today who believe in me.
I see the classmates who bullied me, especially the girls who did things to me and then later told me (and of course teachers) that they’d never happened. Relatives and ‘friends’ who abused me, or who didn’t know me that well and made their own assumptions. Mainstream and special-ed teachers and principals with their agendas for me and their narrow and conflicting views of my abilities and impairments. Counselors, psychologists, and psychiatrists with their views of what my mind was “really” like and what I should do about it. Psychiatric nurses and psychiatric technicians who wielded control over my life direct and total enough to corrupt nearly anyone, and with the insulting and inaccurate motivations by which they were trained to interpret my behavior. Doctors who told me that my internal experiences (including non-verbal thought), by virtue of not meeting their expectations, were completely invalid and impossible. Autism “experts” with their own ideas of which parts of autism I should be concerned about (social skills) and which were just me being lazy or willful (everything else). Random people who told me that communication is impossible for an autistic person.
Without fail, these are the people who appear in my head every time I write an article for public viewing. The closer I get to the real truth about my life1, or to living my life the way that best suits me, the stronger these voices out of my past call me a liar. I have nightmares about them. They tell me I’m too crazy or dramatic to understand myself. They say that documented events never happened. They threaten me, telling me to shut up right now or else.
This mirrors exactly the times when they, in their real-life people forms, asked me what I was thinking, I told them the truth, and they told me it was a lie, or that I lacked insight. Then they told me to say something that I knew was a lie but call it the truth. They told me they knew me better than I did. They had a lot of power over me then. They don’t now. But I am well-adapted for a time when they had power over me. If I weren’t, I wouldn’t be alive to describe it. My fears mirror the strategies I learned for survival — telling the truth is dangerous.
Perhaps because of this exact phenomenon, my heart rate is skyrocketing just writing this down. But someone has to document this. This is the kind of damage that is done to people all the time, the kind that messes with our minds rather than our bodies. It is the hardest kind to write about, and thus is often not written about in detail. It is intensely personal and by its nature evokes an extreme sense of vulnerability.
There are other people out there who have experienced this kind of total domination. There are autistic people who cannot write the whole, non-stereotypical truth about our lives because terrible things will happen when we do2, or because terrible things happened when we did in the past. There are institution survivors who can write about being beaten up by staff but who freeze up completely when we attempt to write about the domination and invasion of our minds. It is so much easier for many of us, in comparison, to stick to the stereotypes. Or the more spectacular but often less invasive physical torture we’ve endured. Every one of us who breaks this pattern is taking a tremendous risk, either in our minds or in present reality.
It is important to know that when you read something by someone who’s a member of a group that’s been dominated and oppressed as heavily as this, you may be missing the whole story. Particularly if you’re one of the people with power over us. This is not out of deceitful natures on our part, but out of terror of what will happen when we reveal certain things. It is important to know that some of those of us who appear to approve of horrible things that were done to us, are people who are afraid — sometimes legitimately afraid for our lives — to say otherwise. Or worse, many have forgotten how to say otherwise, or have only been taught to communicate in ways that validate those who have harmed us. How many communication “interventions” for autistic people teach us to say “No” or “You’re wrong”?
It is important to know that uncounted people are suffering in silence while dominated by people (regardless of intentions) who have belittled us and called our every truthful word a lie. They may look calm, compliant, cooperative, and happy, but under the surface be terrified or secretly defiant. I remember all too well a day when my life was threatened. The Orwellian language of my psychiatric records describes it as a day when my compliance level started improving. For my part, this was the point at which I gave up all hope and cooperated out of fear and despair.
It has taken years to get up the courage to write this. I have tried several times and ended up curled up in a ball on my bed crying or banging my head on the wall, surrounded by the ghosts of psychiatric nurses. Often after only writing the first sentence. I don’t know what has made me able to write about it tonight, but I’m taking full advantage of it. I want people like me to have words and concepts for what has happened to us. I want other people, particularly professionals, to understand the damage they have inflicted and may still be inflicting on us. I want to be another person to break the silence around the things that are harder to describe and harder to endure. I want to defy the people I fear the most.
Writing this is part of my commitment to the truth, and my efforts to conquer the hold of these attitudes — not only on me, but on all the other people who are trapped within the mental prisons others have created for them. Now that I am free of these people’sdirect control over my life, I feel an obligation to speak up for people like I was who are still under that level of control, and for the truth that other people have forced them to bury.
Our lives or circumstances may be (or seem) unusual, but that does not give anyone the right to force us to lie and pretend that we are someone else. It does not give them the right to redefine the truth about us to reinforce their power over us or their stereotypes of what our diagnoses dictate we should be. It does not give anyone the right to inflict the kind of mental torture that leaves a lot of us begging for something as straightforward as a simple uncomplicated beating.3
Copyright © A M Baggs, 2003
1 Particularly the truth that says “This happened” when people want me to think it didn’t; or the truth that says “I can’t do this” or “I can do this” when people have thought otherwise in the past or when it’s an ability that has changed or fluctuated over time. These are all things that other people have strong investments in not being true, for some reason, and they have therefore tried to create in me an investment in not telling the truth about them. This also extends to asking for certain kinds of assistance or refusing other kinds of assistance.
2 As long as services, formal or informal, depend on meeting a very narrow, stereotypical set of traits to a degree that no person truly meets, many will continue to have to hide the traits in themselves that are not stereotypical, in order to survive. This creates a self-perpetuating cycle in which service providers require stereotypes, people hide non-stereotypical attributes (which every last one has), and stereotypes are perpetuated. Autistic people who can talk or type independently, and/or who were diagnosed after the age of three, and/or who scored over 70 on an IQ test at some point in their lives, are at high risk for being excluded already regardless of need, because those are non-stereotypical attributes in themselves.
3 This is not intended to be an endorsement of physical violence. Physical abuse is horrific and needs to be stopped just as much as what I’m talking about does. But many of us find it as taken on its own, as long as it doesn’t kill us, easier to recover from than the more mental forms of torture and coercion and the resulting thinking patterns.