Journeys with Autism

As I watch my book make its way into the larger world, I find myself looking back over the changes that have happened since I finished writing it this winter, and I’m amazed. I’m able to do a great deal more than I thought possible back then. Many of the things I can now do are very humble according to the values of the world we live in, but they mean a great deal to me, because I’ve always enjoyed doing the little things in life. In addition to doing the laundry and washing the dishes (two activities that have always stayed with me), I can do the following things once again:

Food shopping: Going to the co-op is no longer the aversive experience it once was. As I’ve mentioned before, I go in with my earplugs, I communicate in writing, and I enjoy the whole thing. I would love to be able to take out my earplugs there and just talk, but it’s far too crowded and noisy, even during a slow time, and I know that it would cost me too much energy, so I conserve. I love being able to go and buy my own food, though. Since my life, now and always, is a triumph of organization, I try to plan things so that neither Bob nor I needs to go to the store more than a couple of times a week. On the other hand, if we’re missing a few things, I don’t mind popping down to the store to pick up what’s needed on an ongoing basis. I enjoy it. Go figure!

Housecleaning: A couple of months ago, our housecleaner shattered her wrist playing softball. (Ouch!) While she’s recovering, Bob and I have been cleaning the house ourselves, and it’s been okay for me. My main difficulty has always been the dizziness that comes with my vestibular issues, but I’ve learned how to move my body slowly and carefully so as to avoid a lot of it. I’ve been sweeping, mopping, cleaning the bathroom, and straightening the house. I’m one of those very weird people who actually likes housecleaning, so this is a big plus for me.

Cooking: I have rediscovered the fun of cooking. For a long time, those vestibular issues kept me from it, because it was difficult to lean down to get pots and pans out of lower cabinets, and to reach up for bowls and dishes in upper cabinets. But, as with housecleaning, I’ve learned to move my body slowly and carefully to avoid dizziness as much as possible. As a result, among other things, I now make a great Mexican Mole and Curried Tofu; the latter is simmering on the stove as I write. I’ve also been making gluten-free, dairy-free peach crisp (courtesy of our peach tree that gave us fruit in abundance this year) and having it for breakfast every morning.

Driving: I’m driving again. I’m not commuting 50 miles every day, mind you, but when I need to get somewhere, I can get in the car and go. For instance, I have a friend who doesn’t drive. When she comes over to watch a movie, I pick her up, bring her here, and then drive her home afterward. I’m fortunate in that I live downtown and much is available to me without driving. I love to walk and I can get just about anywhere on foot. But it’s very nice to be able to drive when I want to. I’m planning on driving to my daughter’s outdoor soccer games this fall.

Keeping track of finances and paying bills: For most of my adult life, I paid every bill and accounted for every penny. I was the primary (and for several years, the only) breadwinner in my first marriage, and keeping track of the finances was always my responsibility. I chose it, because it gave me a sense of competence and control—and because I hugely disliked trusting someone else to get it right. When I married Bob and quit my job, I let him take over the bill paying and finance tracking, because I trusted him and wanted the break. Lately, though, I’ve missed it. So now, in addition to handling the finances for my book, I’ve again taken on the responsibility for paying the bills, for keeping track of our expenses from day to day, and for ensuring that there is always sufficient money in our accounts.

Running errands: Remember when I cringed at the idea of running…an…an…an…errand? Now, I look forward to it. I don’t try to do too much in one day, but I like going to the post office, the bank, the art supplies store, the hardware store, and any other place without loud music cranked up. I use my earplugs much of the time for running errands, mainly to keep out competing sounds that my auditory system has to work too hard to process and manage. But if I have a question, or need to pay for my items, I can take out my earplugs and talk a bit. Of course, if I sense that any ambient noise is going to become aversive, I put my earplugs back in and let the person know why.

Staying at home while Bob is travelling: This task used to be my biggest challenge. For instance, I’d been going down to New York City partly because I liked travelling out of town once in awhile, partly to see Bob’s dad, and partly to avoid being by myself. But now, I find myself really enjoying the time alone. The last time Bob was out of town, I painted the door and baseboards in the hallway, cooked up a storm, ran a few errands, did artwork, and slept well, without any fear and trembling at all. What a tremendous change! It’s been a long time coming. Glad I got there.

Going to appointments in which I need to talk and listen for extended periods: Now, sometimes talking works, and sometimes, it doesn’t. Everything depends upon the level of ambient noise, whether the other person is in a rush and talking quickly, how many people are in the room and participating in the conversation, and whether I have time to write things down and ask for clarification. The last time Bob was away, I went up to the local community college to discuss taking some online courses there. I needed to sit down with an advisor for an hour or so, and before I went, I called the office (via TTY) and told the advisor just what I needed. I told her that if there were too much noise or too much rush or too many people, I’d need to use my UbiDuo text-to-text device. As it turned out, she was very sensitive to my needs and we had a very enjoyable conversation in a very quiet place. Unbelievable. I decided not to take courses this fall after all, but I was glad that I was able to explore the option. Six months ago, it would have seemed overwhelmingly beyond me.

Doing community work: I’ve had some false starts and stops on the way to figuring out what works for me. Working at the thrift store really can’t work, because of the crowds and the music, and I’ve been able to let go of that. I’ve been making knitted items for the store to sell this winter, and I’ll continue to do mending work as needed, but I can’t put myself out into the community by working in crowded spaces. However, I’ve begun to find my stride since becoming the Chapter Leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). In this role, I’ve been working to find a space to create a sensory-friendly art studio and gallery in town for people on the spectrum. I went over and looked at a place last week, and loved it, but it wasn’t wheelchair accessible; since full inclusion is the name of the game here, I am continuing to look. As anxiety-producing as it is to talk with people I don’t know, I am getting out there and doing it, making contact with people about possible spaces, and beginning to get more comfortable with the whole process.

In addition, I’ve made contact with the people who run The Vermont Partnership for Fairness and Diversity, a civil rights organization based in Brattleboro that has disability rights as part of its larger charter of supporting a culturally diverse, safe, and respectful community. We are beginning a conversation about the ways that ASAN-VT can work with the organization to further our mutual goals. I’ve also begun to work on putting myself out there as a speaker on issues related to autism and disability rights. So all that is very positive.

Making friends: Yes, Virginia, autistic people can have friends. I have begun making new friends, both autistic and non-autistic, and I really enjoy my time with them. I have learned that I have to seek out sensitive people, no matter what their basic wiring. Sensitive people will respect my experience and listen to what I need, and I can offer exactly the same to them. I am a highly sensitive person, so it makes sense that I would be most compatible with other highly sensitive people.

So Rachel, what happened? Did your autism get better? No, my autism didn’t get better. And, as I understand it now, it hadn’t gotten worse before. It’s becoming clear that the loss of abilities I was experiencing for a few years wasn’t the result of autism, but of failing to take autism into consideration and live my life accordingly.

As I’ve mentioned before, I spent the first 50 years of my life doggedly attempting to eat, work, play, speak, act, and drive myself to achieve like a typical person, and then some. I didn’t just go full steam ahead like a person with a typical neurology. I went beyond even that, probably in an attempt to compensate for what was different about me. Even if I had had typical wiring all those years, I could have easily driven myself into the ground. As it was, I was like a person with mobility issues trying to run a marathon every day and keep up with people whose bodies worked differently from mine. Burnout was inevitable.

In a few short years, I seemed to go from super-functional to struggling with basic things, like going food shopping. I thought it was the autism catching up with me. It wasn’t. It was my lifelong ignorance of my being autistic that was catching up with me. For 50 years, I didn’t know that I was autistic, so I couldn’t take care of myself properly. I never rested. I never gave myself a break. I never took care of my sensory needs. I never said “I can’t” when I couldn’t do something. I just drove myself, and drove myself, and drove myself, thinking that with just a little more effort, everything would work out. And then, when the burnout hit, I had to stop, and suddenly, I found myself unable to do a great deal.

And now, nearly two years later, I can feel how much my body and mind have healed from the effects of burnout. Now that I understand how I work, taking care of myself has become a reflex. Taking breaks has become integrated into the fabric of my life. Making my needs clear has become a necessity. Being open about the adaptations I need to make has become a source of pride. And acknowledging what I cannot do has become an enormous relief. And what are the things I cannot do? I cannot tolerate noise, so I wear earplugs. I cannot talk with people with a lot of ambient noise, so I ask for quiet. I cannot follow a constant stream of speech, so I ask people to slow down. I cannot afford to burn up energy by going into auditory overload, so if I feel that it might happen, I bring my text-to-text device and let people know that we may need to use it. I am unable to focus in the midst of crowds of people, so I find other ways to be with people, and I feel free to excuse myself from situations that push me past my sensory limits. I cannot schmooze, make small talk, be indirect, or do social networking, so I do not try. I socialize my own way: I talk about substantive things, I listen to people’s problems and attempt to come up with solutions, and when no solutions are possible, I do my best to be friendly, compassionate, and present.

And yes, the world is not exactly set up to make my way of being easy, and so I have to advocate for myself as well as I can. Self-advocacy has been the single most healing, empowering endeavor of the past two years, and I am actually getting pretty good at it. Being a woman and disabled, I’ve got a double set of messages to overcome about sitting down and shutting up, but I am overcoming them just fine, day by day, and I am committed to doing so.

And, just to give credit where credit is due, I have to mention the fact that the process of getting off the Lorazepam has been one of the most healing things I’ve ever done for myself. I’m down to .35 mg per day, and if all goes according to schedule, my last drop of Lorazepam will be on January 9, 2011. And what a difference it’s making! When I was taking 1.5 mg/day of the stuff, my emotions were all over the place, my sensory sensitivities were through the roof, and my brain was so fogged that I couldn’t think straight. My husband has been noticing that my emotions are much more moderate, positive, and under my control. I’m becoming increasingly aware that my sensory sensitivities have become more manageable. And my thoughts only become sharper by the day.

Accepting my disabilities and working with them have been the key to healing the burnout and enjoying the things that are meaningful to me. The first 50 years of my life were about surviving. I’m no longer just surviving. I’m living and thriving, and I intend to continue doing so every day for the rest of my life.

© 2010 by Rachel Cohen-Rottenberg