Re:It makes one wonder.... (Score 2, Insightful)

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 the same time not be stuffed into a house with a group of strangers. Where I live, services to live in your own apartment are technically available "regardless of degree of disability". If they aren't available where you live, start fighting for them because a lot of people need them and can't get them. Things didn't start out this way, they started out with large institutions, then people fought those and the result was little institutions, then people fought that and we're starting to get a way to live with a roommate of our choosing or someone living next door or coming in a good chunk of the day. If it's not there where you live, people haven't fought hard enough yet.

It's very possible to find support staff who work out, but it can take time. It's taken me years to find someone I really click with, who's learned to read my non-standard body language and so forth and who can deal with various aspects of me that very few people are willing to deal with. It's possible whether it's staff coming in while she's living with you, or even staff coming in while she's living in her own place.

I would also suggest the book Independence Bound: A Mother and Her Autistic Son's Journey to Adulthood by Jacquelyn Altman Marquette. While I have a lot of problems with the way in which she describes her son, the book contains information about how to assist an autistic adult with living on his own. He otherwise would have probably ended up in a group home, because he lacks a lot of communication and daily living skills that most people think are required in order to live on your own.

It's good to start thinking about this now, though. That way it's possible to prepare, maybe even find someone or even more than one person willing to do this, before this becomes necessary.