3:37am June 4, 2014

Past, Present, and Future

[Understand: I picked and chose words to make myself look as hopeless as possible, in order to demonstrate that this was exactly what people were doing when they described that hypothetical institutionalized person who needed a cure. I had, and have, a lot of abilities that I didn’t mention here. The point was you could take any autistic person and make them look bad enough that only others could speak for them. This was written in 2004.]

A special issue of the Schafer Autism Report, “In Defense of Behavioral Treatment for Autism”, had a lot of plainly false things to say about activist autistics, in its rush to discredit Michelle Dawson and those of us like her. This is one autistic’s personal response to some of the statements in the newsletter. Michelle Dawson has also responded to some of these statements.

I know an autistic girl. She’s described as low-functioning, severely regressed, non-compliant, severely complex, and unsalvageable. She is diagnosed with autism, but they’re trying to add labels like complex neurodevelopmental disorder to her. She is regarded as severely violent and self-injurious. She was diagnosed with autism upon admission to an institution. She lives in an institution now. She bangs her head on things. She rips her hair out in clumps. She sits in the corner a lot without interacting. People’s attempts to interact with her often lead to takedowns and her spending the night or longer in restraints. She spends a lot of her time in solitary confinement.

There are conversations going on on the Internet about people like her, but she’s not in a position to take part in them. What speech she has right now doesn’t make a lot of sense. She doesn’t seem to have fully learned to connect speech to communication. The people on the Internet say that they want to cure her. They don’t know her, but they know that low-functioning autistic people who bang their heads on the walls of institutions are the ones in most desperate need of a cure. Or at least of intense behavioral treatment. They believe that she cannot know happiness or freedom from institutions until she learns certain skills, and that there are only certain ways she could possibly learn these skills.

The Internet people are saying that the autistic adults on the Internet don’t understand people like her, or may not really be autistic at all. They are saying that if “high-functioning” autistics had their way, people like her would rot in institutions, and that autistic people need to be taught to act like non-autistic people. They are saying it is offensive that autistic adults could even compare themselves to her. They have never met her, nor have they necessarily met many of the autistic adults on the net. But they think they know.

For my part, I wish I could talk to her. I want to tell her that she can get out of there without having to be normal. I want to tell her that no matter how many skills she ends up lacking, she will be able to one day get assistance to live outside of institutions. I want to tell her that other people like her exist in the world. I want to tell her that one day she will discover a means of communication that works for her. I want to tell her that one day she will find a living situation that works for her. I want to tell her, perhaps most of all, that the “treatment” she is getting isWRONG, that she doesn’t deserve it or need it. That there are other options beyond anything she has seen yet.

Unfortunately, I can’t talk to her, at least not so she can understand me. I can’t travel backward through time. That’s what it would take for me to meet her in person, because she is the person I used to be. The Internet people are real in her time, although she doesn’t know them. She will have several long years to get to where I am now, and to look up those old discussions to marvel at the things others said were necessary for people like her. Here is what happened between her time and mine:

I was transferred to a different institution. They used behavior modification there, and they used verbal abuse, torture, and violence as well as rewards. I learned to repeat what they wanted me to say. I was buried underneath their taught non-communicative echolalia, and their control and power over me. I felt like a prisoner, but I had no way of communicating this. So instead I woke up screaming every night, and in the day my mouth obediently repeated what they wanted. I felt dragged along by a body I couldn’t connect to, and I felt my mind bending into their patterns. I felt guilty, but I didn’t know why.

Not all of the behavior modification employed punishment. Some of it was purely reward-based. But because the people doing it were so busy denying my reality, they were training me to act in ways that were detrimental to my well-being. I learned that I had to spend time around people every day, even if it became unbearably painful, and I learned that when I felt that pain, I was supposed to engage even more vigorously in the things that caused it. The worse I felt, and the further the distance between my thoughts and my actions, the more “high-functioning” they claimed I was becoming.

They decided this was enough “progress” to send me home. Then I lived in a combination of my parents’ house, special education, and day programs. I had already been broken by the behavior modification. Witnessing the things that were done to the other students only drove me further underground. Any reaction on my part was a punishable offense, so I learned how to have PTSD flashbacks without showing it.

This was a place that was well-known for having a “good” autism program. I watched children who could not stand unassisted thrown on the ground, stripped, and tied up with their own clothing, and I heard them screaming and crying when they were thrown in the closet. It was so terrible, and I was being given so much training to view things like that as normal and inevitable, that I almost wondered if I’d imagined it. But I got independent verification years later from two separate staff who had worked at that school: It really was that bad. This school still operates.

When I discovered other autistic people outside of institutional settings, I was mentally and emotionally a wreck. I had very few channels to clear communication. I had flashbacks all the time and guilt for them because nobody had explained to me what was happening. I thought in many ways I still lived in the institutions, and I thought of everyone around me as staff. At the same time, I repeated what I had been taught to repeat (and in some cases, to believe), which often included lies like “The treatment I was given saved me from being institutionalized forever.” I had learned my behavior mod goals of obedience, so I tried to obey everyone, even those who hurt me.

Some autistic people decided to help me get over that. One woman taught me to think for myself, and did not accept my passively trying to follow her. I had been explicitly taught that if I thought for myself, I would die. She helped me get over this fear. Autistic people are capable of a good deal more compassion that we are given credit for.

I began to be able to truly communicate rather than repeat things I was “supposed” to say. Prior to this, I had not entirely grasped the full purpose of communication, because the behavior programs taught me to say things, not necessarily to say what I meant. So communication had been very haphazard until then, and I had lived a very strange life in that sense. A psychiatrist who had known me in the institutions diagnosed me with iatrogenic post-traumatic stress disorder – an extreme and life-changing negative reaction to “treatment”.

I got help obtaining a life for myself. This life involves a lot of assistance with things that I still can’t do. I still soil my clothing. I still can’t attach speech to communication with enough frequency to use it for that purpose. I still can’t cook. Sometimes I can’t eat without help. All the behavior programs have not changed this, and in fact have caused me to lose a few skills I might otherwise have kept or developed. There are things I could do in the institutions that I can’t do now. I have a much better life now than I ever have before.

Treatment didn’t get me out of an institution – if that were true, I’d never have left one because I don’t have the skills many think people need to do so. Institutions don’t grow up around people because they’re like whatever sort of person I was. People get put in institutions by other people who think that the only way certain people can live is inside of them.

I desperately wish my situation were unique.

The people on the Internet are still there, and many of them are still saying the same things. Here is what one of them said recently:

Without intensive intervention, many individuals diagnosed with autism will eventually wind up in institutions, unable to even feed or toilet themselves independently. To avoid providing this intervention, all the while assuring the individual that we are doing this in his/her own best interests, “respecting dignity and individuality,” strikes me as a bit hollow.

[Bobby Newman, “Behavioral Flowers for Algernon”, Schafer Autism Report, April 2004]

I will reply point by point, describing the girl I was talking about.

She is not in an institution because of any skill she is lacking. She has been told that, as have her parents, but it is not true. She is in an institution because people believe that is where people like her belong. She remains there because people have set up false prerequisites for leaving, unable to imagine that a person like her could be “safe” outside of an institution. Never mind that, while in one, she is not safe at all.

There are many skills she could learn, and many that she may never learn no matter how much training she is given. There are skills that she will, inevitably, lose, ones that are considered very important by the people who write about what needs to be done to people like her. She will find in the future that even when she is unable to feed and toilet herself independently, even when she bangs her head thousands of times an hour, there are ways of living with that without needing to be put in a locked building with a bunch of other people.

She is about to be given intervention, in the literal sense of the word. She is going to be given training that will make her feel hollow, because it will create the appearance of communication with very little real communication, and the appearance of competence in areas where she is not competent. It will hurt her because it does not respect her dignity or individuality. It will happen in part because of people like the Internet people, who claim that it is absolutely necessary for people like her, and hinder the attempts of autistic people to advocate for alternatives.

The autistic people who are being vilified in her time and mine do not advocate leaving her there. It is autistic people in a time between hers and mine who will help her learn more than she has ever been taught through intensive intervention. Some of them will be the self-same autistic people who are being demonized for their anti-cure attitudes in her time.

It is these autistic people, supposedly incapable of empathy, who will understand what she has been through, from the inside. They will understand the gaps in her own understanding, and help her to bridge them. They will not leave her to stagnate (if people can ever truly stagnate) in an institution; they will help her learn to become the autistic person that she is, with full respect for her dignity and individuality. And they won’t be using ABA to do it. I know this for a fact because I am her future.

Today, I am one of those autistic people, the ones who don’t want a cure, and don’t view ABA as medically necessary treatment. The ones who view autism – yes, including the autism of the person I was – as fundamentally beautiful, even with the difficulties it can bring. The ones who see no contradiction between growing up, learning things that benefit our lives, and remaining autistic.

Here is another thing the same person said:

Suppose you were the individual who, without treatment, was destined to be standing alone in a corner of an institution, dependent on everyone around you to take care of even your most basic needs, rocking perseveratively and eliminating in your clothing, unable to sample what life has to offer. Would you like someone who could speak and could interact in the everyday world speaking on your behalf and counseling against treatment? No, I wouldn’t either.

[Bobby Newman, “Behavioral Flowers for Algernon”, Schafer Autism Report, April 2004]

My first response is, how do you know? The girl does not want a cure, she wants a better life. She would love someone to speak against the treatment she is receiving. She thinks it is hopeless. When she thinks at all, she thinks she deserves what she is getting, because that is pretty much all she hears. That, and that what people are doing to her is “help”.

I have described the girl, and I have explained that I am her future. I am speaking for the person I used to be. I want her to have her own voice, like I do now through typing. I don’t want her to be simply trained to say what people want her to say, trained to use the communication method that is most convenient for those around her, regardless of whether she is communicating or not.

Now that I am out, I can name who I would and wouldn’t want speaking up for the girl’s rights. I would want people like Michelle Dawson, Laura Tisoncik, Cal Montgomery, Joel Smith, and Larry Arnold on her side. They would counsel against the harmful treatment she was receiving, and help her get somewhere where people truly respected her. They would know that there are other ways to help someone in her position, that the world wasn’t a binary choice between behavior mod and institutionalization. I trust some of these people with my life. They have already saved it. If I ever become seen as “the girl” in the world’s eyes again, I have already prepared legal documents naming some of them my decision-makers.

I would not want FEAT, Lenny Schafer, Bobby Newman, or any other pro-cure and pro-ABA people anywhere near the girl, nor would I want autistics who have absorbed their attitudes toward autism (just as she, at one point, echoed the attitudes of her captors). People with their outlook already damaged the girl, and therefore me. They have already proven that they don’t understand her situation. But they see the girl as a real autistic person, and claim that they know what is best for her. They claim that I know nothing about what is good for her, and some of them even claim that I am not autistic. They seem unable to understand that she and I are the same person.

The most disturbing part, though, is the way many people treat the autistic adults who try to warn them about the dangers of various “therapies”. We don’t do this for fun, and any positive effects from attention we get (many of us aren’t all that fond of attention in the first place) are generally outweighed by the unpleasantness of rehashing what a lot of us would rather forget.

I certainly don’t enjoy flashbacks, cold sweats, or hyperventilating until I nearly pass out, all of which were direct results of reading the Schafer Autism Report last night and trying to come up with a reply. I don’t enjoy making myself vulnerable by describing private details of my life in public view. I probably speak for a lot of us when I say I’d rather be going about my life in the present, not reliving the least pleasant parts of my past. The reason I talk about these things is to keep other people from having to experience what I did. No more, and no less. My experiences are unfortunately far from exceptional – if they were exceptional, I wouldn’t bother warning people. I don’t write out of hate, but out of the strong place in my heart held by people who are in the position the girl is in. I don’t hate anyone in the world. Yet people treat people in my position like malicious attention-seeking meddlers, as if we don’t understand what we’re talking about, and as if we’re hindering someone’s only hope for the future.

If you are a parent who sees activist autistics as hindering things for your child, and are tempted to characterize us this way, take note:

When you call us cured or non-autistic, you are setting things up to be difficult for your child when he learns to talk but needs help doing other things. He might have trouble getting services if his diagnosis isn’t taken seriously once he communicates more, and people just like you may hinder his chances.
When you insist that institutions are the necessary future for anyone without certain skills, and fail to work to change that, you may be the one condemning your child to that fate when she fails to gain those skills or loses ones she has gained. There are all kinds of people working to create alternative arrangements to institutions. It might be better to join them. Even if all the autistic people in the world suddenly became non-autistic, there would still be plenty of people in institutions, but if people work to make a world that accepts people outside of them, then nobody will have to live in them.
When you condemn us, insult us, and vilify us, you may be setting a precedent for future parents to do the same to your own child if he starts saying things like we do. If you would not want something said to your child, then please don’t say it to us, because we might be your child’s future.

When people tell me that I am hurting the chances of the girl in the institution by fighting for her rights, then they are hurting her, because she is me, and she already had to go through the recommended behavioral treatments and drugs. I am the one stuck with the aftermath, just as many other autistic adults are, and many autistic children will be. Nobody is advocating stagnation; we are advocating true learning and true growth that takes the whole person, including the autism that will always be there, into account. We have seen it, so we know it exists.

The Schafer Autism Report wants people to believe that we advocate hatred toward parents, and stagnation, even festering (a disgustingly emotionally-loaded description comparing autism to pus). They imply that we think autism is all there is to us. They publish a letter by an “expert” defaming all autistics who engage regularly in public speaking or writing, making it sound as if any of us who can speak up for ourselves are by default not qualified to do so – but then, of course, it’s okay for an autistic boy to praise ABA in front of a whole courtroom and still be considered autistic, since he agrees with them. They want to take the girl I describe, and me, and put us in separate categories, never to meet, never daring to acknowledge that we are one and the same.

If you want to know what we’re really about, don’t listen to them. Read what we have to say carefully, and don’t dismiss us out of hand based on what you have been told we stand for.

Here is our real message to parents: Please work with us, respect us, and listen to us, so our past doesn’t become your children’s present or future.

[After I wrote this, some asshole said “Real activists don’t need to thank their fathers.” Apparently real activists aren’t allowed to have family, or to receive support from anybody. Which is a shitty message to send any activist – “you must do it alone”. But really I think they were just trying to find something to taunt me for.]