It's also important to find someone who likes her and respects her, and who she appears to like.
I've had a lot of experience with support staff, having had many myself. One important thing to remember is that it's different from a nanny. This isn't a babysitter for a child, it's someone who helps an adult with things the adult has trouble with. Some agencies have sent people who walk into my house, stereotype me as childlike, and try to mother me. These people frankly scare me. Especially when they take it to the point of patting me on the head or trying to cuddle.
The person I've found who had worked out the best for me doesn't fit any particular mold, and throws a lot of conventional ideas about what staff should and should not do out the window. This would normally be a warning sign, and normally is a warning sign. But this person makes it work. The key is that she is not throwing these rules out the window in order to be a controlling force in my life, but rather because she has a gut-level sense of ethics and what needs to be done, learns from experience, and knows that no set of rules truly fits.
I've had people before, for instance, who worked for me more hours than they assigned and then used this against me when they did something wrong. Sort of, "Yeah I may have done this wrong, but look what I did for you, so don't say anything to anyone." This person has never done that. She has worked longer hours without pay before, but she never used this as a means to control me. She just knew it needed to be done and did it.
It's not as important to start out with someone who already knows, or think they know, how to interact with autistic people. It's important to find someone who learns from experience and is dedicated to applying that learning to everything they do. A person like that, whether they even knew what autism was before they started the job, will be more able to see a person as an individual and base their decisions around that person on who that person is rather than something they read in a textbook about the best thing to do in a given situation. If you want to read up on what that kind of person is like, I'd recommend the complete works of Dave Hingsburger. In print and out of print, just stock up on his books and read them. He's someone who learns from his mistakes, whether sooner or later. I use his work to train my own support staff.
It should preferably be someone who genuinely enjoys the job. People who don't enjoy this job are not all that pleasant to have working for you in this capacity. And it is important that the support staff is working for the autistic person. Even if that autistic person doesn't have a standard means of communication, it's not good at all to have to go through life with other people deciding everything for you. There are ways to figure out what a non-speaking autistic person wants and doesn't want if you're patient, observant, and creative. The book, again by Hingsburger, called First Contact is useful for clearing away preconceptions in dealing with people with very non-standard communication.
Failing this really cool kind of staff, it's best to find someone who can practice professional detachment to some degree. It's not that my current staff has professional detachment, but that someone who isn't as far into the job as my current staff is will need professional detachment in order to avoid doing a lot of things wrong. When someone doesn't have or develop a gut-level sense of what to do in a situation, rules can be important. This goes for support staff as much as anyone else.
This is definitely possible though. I need assistance with most things, and I have someone around most of the time to provide that assistance. I didn't even need to move to a group home to get it, which I'm thankful for because I've done enough time in institutions, of which I consider group homes the miniature variety. It's good to be able to move away from my family and at t
One thing that has to be remembered is perspective. Most non-autistic people I know seem, no matter how bad they are at doing anything else, to be savants in such obscure skills as recognizing people entirely by their faces. They also often have splinter skills in areas such as multitasking, keeping track of large amounts of social information, relating to whole objects in their environment, and many more. At least some of these things seem to hold true even if they can't do simple things like finding their way around a new location without getting lost, even if they're otherwise considered intellectually disabled.
When I was diagnosed with autism, the doctor apparently speculated about whether or not I was a savant. I don't believe myself to be one, but I think he must have been noticing what appeared to him to be a strange combination of extreme abilities and extreme difficulties. Having to live with myself every day, I can't consider myself that exotic.
I write a lot. I sing with perfect pitch. And I don't get lost, having detailed maps in my head of pretty much anywhere I've been since I was three. I have a strong suspicion that if all of my other abilities were average, nobody would be making a big fuss over this kind of thing.
I also can't speak, not with communication in mind. I have to work to understand sensory input as more than a chaotic and undifferentiated mess of colors, shapes, tones, pitches, textures, scents, and tastes, that also tend to blend into each other. I have enough trouble coordinating perception, thought, and action that, despite a good deal of teaching, I can't do a lot of things that other people consider basic -- food, water, hygiene, and so forth. I need someone either doing those for me or walking me through every step, or else I either get everything out of order or don't do it at all. Someone is paid to do exactly that.
I have trouble deliberately moving around my house unless it's in a specific path, and have to use a number of outside cues to move where I want to move at any given time or else I just get stuck. While I can find any object based on my memorization of its location, if someone moves it a few inches I might as well be blind as far as my ability to recognize it. I can't cross a street safely. I can't pay attention to more than one thing at once, and that can go as basic as color or pattern or shape, not all three at once. No matter how many rules and ideas I learn when I'm not doing things, I won't be able to remember most of them while I'm trying to keep up with moving and perceiving so in practice act like I don't know them. I have a lot of difficulty with things other people consider everyday life. You get the general picture.
I've become aware of how weird this seems to people who aren't autistic. They seem to think that you can either do lots of things or not do any things. But it still seems weird to me that most of them can do such a useless thing as recognize faces despite the fact that they get lost so easily compared to me. The fact that I can do the things I do and can't do the things I can't do doesn't confuse me at all. The fact that people with much less intensely focused minds than mine can do such specific tasks as recognizing faces, does confuse me.
While savants have talents even more extreme than mine, I often wonder what the reason is for the specific category. To me, what looks to others like a very uneven mix of skills is totally normal and even given that I understand the way my mind works and grew up in it. I can do direction and layout without thinking. Other people can multiply large numbers without thinking (which I can't do). The fact that they can do large numbers is only marginally odder to me than the fact that most people can do small numbers.
I've speculated that the idea of the autistic savant or idiot savant came about when someone looking in from the outside decided that it was really weird that his assumptions didn't fit. Here was som
Jerry Newport is a mathematical savant who has been able to talk about his abilities for a long time, and he has described talking to other savants so they must exist. He wrote a book called _Your Life Is Not A Label_ in which he devoted some space to the discussion of savant skills.
Donna Williams, an autistic woman, has also described savant or savant-like abilities, for instance never sculpting and then the first time she took a sculpting class, being able to create expert-level detailed life-sized sculptures. She describes in some of her books what she believes the basis for these seemingly out-of-nowhere talents to be.
I have known a few autistic people who are instant calculators or other kinds of savants and perfectly able to describe and talk about this.
I know this person is not the only autistic savant to describe his abilities, so I have to wonder if he's more the only one certain aspects of the media could find who wanted to talk to them. Similar to how when Tito Rajarshi Mukhopadhyay wrote a book relatively recently, it was hailed as the first book by a non-speaking autistic person, when in fact there had been several before him and the first book by any autistic person (who disclosed their autism at any rate) was by a person with a story very similar to Tito's.
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It's also important to find someone who likes her and respects her, and who she appears to like.
I've had a lot of experience with support staff, having had many myself. One important thing to remember is that it's different from a nanny. This isn't a babysitter for a child, it's someone who helps an adult with things the adult has trouble with. Some agencies have sent people who walk into my house, stereotype me as childlike, and try to mother me. These people frankly scare me. Especially when they take it to the point of patting me on the head or trying to cuddle.
The person I've found who had worked out the best for me doesn't fit any particular mold, and throws a lot of conventional ideas about what staff should and should not do out the window. This would normally be a warning sign, and normally is a warning sign. But this person makes it work. The key is that she is not throwing these rules out the window in order to be a controlling force in my life, but rather because she has a gut-level sense of ethics and what needs to be done, learns from experience, and knows that no set of rules truly fits.
I've had people before, for instance, who worked for me more hours than they assigned and then used this against me when they did something wrong. Sort of, "Yeah I may have done this wrong, but look what I did for you, so don't say anything to anyone." This person has never done that. She has worked longer hours without pay before, but she never used this as a means to control me. She just knew it needed to be done and did it.
It's not as important to start out with someone who already knows, or think they know, how to interact with autistic people. It's important to find someone who learns from experience and is dedicated to applying that learning to everything they do. A person like that, whether they even knew what autism was before they started the job, will be more able to see a person as an individual and base their decisions around that person on who that person is rather than something they read in a textbook about the best thing to do in a given situation. If you want to read up on what that kind of person is like, I'd recommend the complete works of Dave Hingsburger. In print and out of print, just stock up on his books and read them. He's someone who learns from his mistakes, whether sooner or later. I use his work to train my own support staff.
It should preferably be someone who genuinely enjoys the job. People who don't enjoy this job are not all that pleasant to have working for you in this capacity. And it is important that the support staff is working for the autistic person. Even if that autistic person doesn't have a standard means of communication, it's not good at all to have to go through life with other people deciding everything for you. There are ways to figure out what a non-speaking autistic person wants and doesn't want if you're patient, observant, and creative. The book, again by Hingsburger, called First Contact is useful for clearing away preconceptions in dealing with people with very non-standard communication.
Failing this really cool kind of staff, it's best to find someone who can practice professional detachment to some degree. It's not that my current staff has professional detachment, but that someone who isn't as far into the job as my current staff is will need professional detachment in order to avoid doing a lot of things wrong. When someone doesn't have or develop a gut-level sense of what to do in a situation, rules can be important. This goes for support staff as much as anyone else.
This is definitely possible though. I need assistance with most things, and I have someone around most of the time to provide that assistance. I didn't even need to move to a group home to get it, which I'm thankful for because I've done enough time in institutions, of which I consider group homes the miniature variety. It's good to be able to move away from my family and at t
One thing that has to be remembered is perspective. Most non-autistic people I know seem, no matter how bad they are at doing anything else, to be savants in such obscure skills as recognizing people entirely by their faces. They also often have splinter skills in areas such as multitasking, keeping track of large amounts of social information, relating to whole objects in their environment, and many more. At least some of these things seem to hold true even if they can't do simple things like finding their way around a new location without getting lost, even if they're otherwise considered intellectually disabled.
When I was diagnosed with autism, the doctor apparently speculated about whether or not I was a savant. I don't believe myself to be one, but I think he must have been noticing what appeared to him to be a strange combination of extreme abilities and extreme difficulties. Having to live with myself every day, I can't consider myself that exotic.
I write a lot. I sing with perfect pitch. And I don't get lost, having detailed maps in my head of pretty much anywhere I've been since I was three. I have a strong suspicion that if all of my other abilities were average, nobody would be making a big fuss over this kind of thing.
I also can't speak, not with communication in mind. I have to work to understand sensory input as more than a chaotic and undifferentiated mess of colors, shapes, tones, pitches, textures, scents, and tastes, that also tend to blend into each other. I have enough trouble coordinating perception, thought, and action that, despite a good deal of teaching, I can't do a lot of things that other people consider basic -- food, water, hygiene, and so forth. I need someone either doing those for me or walking me through every step, or else I either get everything out of order or don't do it at all. Someone is paid to do exactly that.
I have trouble deliberately moving around my house unless it's in a specific path, and have to use a number of outside cues to move where I want to move at any given time or else I just get stuck. While I can find any object based on my memorization of its location, if someone moves it a few inches I might as well be blind as far as my ability to recognize it. I can't cross a street safely. I can't pay attention to more than one thing at once, and that can go as basic as color or pattern or shape, not all three at once. No matter how many rules and ideas I learn when I'm not doing things, I won't be able to remember most of them while I'm trying to keep up with moving and perceiving so in practice act like I don't know them. I have a lot of difficulty with things other people consider everyday life. You get the general picture.
I've become aware of how weird this seems to people who aren't autistic. They seem to think that you can either do lots of things or not do any things. But it still seems weird to me that most of them can do such a useless thing as recognize faces despite the fact that they get lost so easily compared to me. The fact that I can do the things I do and can't do the things I can't do doesn't confuse me at all. The fact that people with much less intensely focused minds than mine can do such specific tasks as recognizing faces, does confuse me.
While savants have talents even more extreme than mine, I often wonder what the reason is for the specific category. To me, what looks to others like a very uneven mix of skills is totally normal and even given that I understand the way my mind works and grew up in it. I can do direction and layout without thinking. Other people can multiply large numbers without thinking (which I can't do). The fact that they can do large numbers is only marginally odder to me than the fact that most people can do small numbers.
I've speculated that the idea of the autistic savant or idiot savant came about when someone looking in from the outside decided that it was really weird that his assumptions didn't fit. Here was som
Jerry Newport is a mathematical savant who has been able to talk about his abilities for a long time, and he has described talking to other savants so they must exist. He wrote a book called _Your Life Is Not A Label_ in which he devoted some space to the discussion of savant skills. Donna Williams, an autistic woman, has also described savant or savant-like abilities, for instance never sculpting and then the first time she took a sculpting class, being able to create expert-level detailed life-sized sculptures. She describes in some of her books what she believes the basis for these seemingly out-of-nowhere talents to be. I have known a few autistic people who are instant calculators or other kinds of savants and perfectly able to describe and talk about this. I know this person is not the only autistic savant to describe his abilities, so I have to wonder if he's more the only one certain aspects of the media could find who wanted to talk to them. Similar to how when Tito Rajarshi Mukhopadhyay wrote a book relatively recently, it was hailed as the first book by a non-speaking autistic person, when in fact there had been several before him and the first book by any autistic person (who disclosed their autism at any rate) was by a person with a story very similar to Tito's.