Journeys with Autism

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?”

© 2010 by Rachel Cohen-Rottenberg