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To the Kit Weintraubs of the World
This is a response to Kit Weintraub and everyone who holds an opinion like her, as expressed in the following paragraph regarding her son and autistic human-rights activists:
He is not like these people; he was much more severely afflicted than any of them, despite their claims to having a full range of autistic traits. Don't you question the fact that these people are highly verbal and intelligent, many of them successfully employed and in relationships, yet many of them claim not to be fully toilet-trained? Lack of self-help skills and self-injurious behaviors are usually associated with people who are lower functioning who are unable to express their wants and needs. These are the facts. I question strongly as to whether these people are being truthful.
To the Kit Weintraubs of the world,
I hold you fully responsible for your contribution to my and others' lack of services by claiming that "intelligent" and "articulate" autistic people (such as your perception of me) do not have problems with self-care skills or self-injurious behavior, and your implication that we are liars if we say we do.
Come over to my house. Right now. Make sure I have — and eat — food. Make sure I have — and drink — water. Make sure I am living in sanitary conditions. Help me shower. Help me brush my teeth. Empty the full garbage pail full of used Depends (sorry, writing skills don't lessen my sensory issues any) in my bathroom.
Make sure that I do not have any serious medical problems, because if I did, I would likely not be able to tell you. This has been responsible for so many close calls in my lifetime that I think you should do something about it, since you're the kind of person who gets in the way of anyone watching that very closely.
You will need to break me out of perseveration to make sure I take my medications, because if I don't take them on time I could have seizures from the effect of them wearing off too fast. You will also need to break me out of typing solely about a narrow subject area if you want to ask me any questions about how I'm doing, but don't expect me to be able to answer them, and don't expect me not to veer back into the limited number of topics I do know how to type about. Walk me through everything I need to do, step by step, because that's what's generally required and no amount of behavior programs or knowledge has changed that.
Moreover, you'll need to be dealing with the effects of my almost-inevitable difficulty with realtime communication with you. If I can't figure out language, you're going to need to find some way to divert me from whacking my head on things. You'll want to save both my head and the objects, because often the nearest object at hand is my portable keyboard and I tend to break them that way. They're expensive to replace, so you'll need to replace the one I broke so far. But if you touch me, I'm likely to lash out at you instead, and I might scream or throw things in the meantime anyway while frustrated about inability to come up with language around certain topics. I own a helmet, but you're going to have trouble getting it on me if your approach to doing so is too direct, so you're going to need to figure out a way to do that too.
You'll also need to be able to determine if I want to do or say something but am unable to initiate the conversation required to do it. When this is going on, I look pretty much exactly like I do any other time, and may be sitting there staring straight ahead and rocking with no particular facial expression. It's your job to figure out which is which and avert the possible meltdowns that can occur if you guess wrong for too long in either direction.
If you can't deal with hours of straight screaming when I do try to initiate things but can't get words out, you won't be too good at any of this. And then you'll have to guess whether the reason I'm screaming is that I'm hungry, tired, in pain, sick, thirsty, overloaded, wanting to do something, wanting not to do something, wanting you to do or not do something, startled, reminded of institutions, confused, having word-finding problems, or simply in the middle of reading another one of your letters to the Schafer Autism Report. And then you'll have to figure out what to do about it without making the situation worse.
If we go out in public, you're going to need to make sure that I don't run out into the middle of the street. I not only don't always notice cars, but sometimes I get distracted by the shapes of the lines on the road or something else entirely and won't remember things like safety. You're going to have to deflect anyone who questions my right to be out in public, which is something that happens fairly often if I go out alone, and you might want to gripe for me at people who talk to me in slow measured baby-talk. You might need to translate things back and forth between my often-unusual communication style and other people's, and read me things when I'm too overloaded to be able to read. You're also going to need to deflect anyone who tries to interfere if I have a meltdown, and you're going to have to put up with rude comments towards me and possibly towards you. And if the stimulation out there results in too much confusion, you're going to need to steer me towards a car to get me home, but make sure that I don't, while still confused, open the car door to get out in the middle of the highway. It's happened.
If I have been sent to the police station or an institution because I have gone out in public alone and been noticed by the wrong people while unable to do anything about it, you're going to need to get me out of there as rapidly as possible to prevent any number of possible disasters that could ensue. Including that if I am given PRN Haldol or Prolixin in response to a meltdown, as many emergency rooms are wont to do, I could die from an allergic reaction.
It would be useful if you could help me avoid doing things like walking across town in shorts and a t-shirt in the middle of the night in the winter, too. It's not that I want to do that, but that when I'm shutting down I won't always remember not to. You'll also have to help me remember not to strip naked in front of company, not to get into cars with strangers, and other things that you probably assume I have no trouble remembering.
Everything else aside, you're going to need to make sure I don't die. Which means keeping careful tabs on my water and food intake, reading every nuance of my involuntary changes in body language to tell when I'm sick and when I'm healthy, and keeping me out of situations in which others could harm me, among other things.
After you spend enough time around me in all of these different situations and many more, you're going to be faced with a possibly even more daunting task: Explaining to all the other people like you why it is that it's wrong to judge an autistic person's other abilities by how good their writing is on the Internet. That's what my current staff person (who's out with the flu, which is one reason I need you to cover for her) has to deal with all the time. Her name is Debra Kahrs. You're welcome to talk to her, and in fact you'll have to, because I'm also incapable of remembering everything I need from staff at once.
And that's just the beginning. All that, and all the other things I need people to do for me in order to survive, is why I have no patience for your viewpoint. Your viewpoint directly contributes to the inability of people like me to obtain adequate services. That means that viewpoints like yours directly contributes to the starvation, dehydration, homelessness, misdiagnosis, incarceration, neglect, and death of many autistic people whose only crime is having writing or other communication skills (or employment level, although I've been told I couldn't even work in a sheltered workshop so I fit your stereotype there), however narrow or wide they may be, that you deem to be too high to still have significant problems with self-care or self-injury.
Many autistic self-advocates have done way more to directly aid autistics in situations like mine than you have, doing everything from taking in homeless autistic people (who couldn't get housing or services because of people like you who claim we need none) to making sure people in my position have housing, income, and services of our own. This despite many such self-advocates needing the same services and being very poor themselves, and despite your efforts to make it sound like we didn't need these services in the first place.
I know an autistic woman who taught self-advocacy skills to autistic children of all levels of communication ability, while herself living in a homeless shelter in part because of the stereotypes you help to perpetuate. One author who writes on human rights issues in autism had an IQ measured well under 70 until she learned to type, and then upon typing, when her IQ jumped to well above 70, she lost the ability to get state services despite the fact that she hadn't become non-autistic. The autistic woman who saved my life and helped me get the services I have now had no such services herself at the time, and could die if the ulcers on her legs get infected again. The ulcers are this bad in part because a state developmental disabilities bureaucrat who subscribes to your general philosophy told her that if she knew about hygiene, she must be able to wash herself.
Because your viewpoint contributes directly to the viewpoints of people who make policy on these things (most autistic viewpoints are ignored, and you encourage people to ignore us), I expect you to come out to my home and the home (if they've even got one) of every other autistic person harmed by your views and make direct reparations. Work for us for awhile, and advocate for equal rights including but by no means limited to our right to adequate and dignified autism services. You say you're afraid of us? At least our ideas aren't likely to kill you.
I came up with this whole idea in a flash one night while lying flat on my back wondering if I was going to die from what turned out to be dehydration, when my blood pressure had dropped to somewhere around 80/40 and I couldn't see anything or even sit up. Nobody had noticed I was dehydrated, least of all me, and I certainly hadn't communicated anything about it. And that was when I had staff. This week my staff person's sick. So why don't you apply for this job or advocate for services for autistic people including autistic people like me and make your reparations for the damage you've caused to me and others that way? I'm dead serious.
Copyright © 2005 A M Baggs