Blazing My Trail: Living and Thriving With Autism

By Rachel B. Cohen-Rottenberg

Blazing My Trail is the sequel to The Uncharted Path: My Journey with Late-Diagnosed Autism, Ms. Cohen-Rottenberg's moving memoir about her childhood on the autism spectrum and her life after diagnosis as an adult. In this latest work, the author chronicles her process of creatively adapting to life with a disability, advocating for full inclusion, and reclaiming her independence, her power, and her engagement with the world.

• Language: English
• Publisher: eBookIt.com
• Release date: Apr 26, 2016
• ISBN: 9780984138821

Book preview

blessing.

Acknowledgments

I am indebted to several people for their support during the writing of this book.

For his careful peer review of my manuscript, I thank Bob Rottenberg.

For her meticulous copy editing and proofreading, I thank Deb Tokarewich.

And for her unconditional love and encouragement, I thank my daughter, Ashlynne Anderson.

Chapter 1

Then and Now

The curious paradox is that when I accept myself just as I am, then I can change.

— Carl Rogers

In November of 2008, at the age of 50, I was diagnosed with Asperger’s Syndrome. This diagnosis led to a process of self-reflection that culminated in the writing of my memoir, The Uncharted Path: My Journey with Late-Diagnosed Autism.

After the book was published in July of 2010, I found myself wanting to believe that I had told my story, once and for all. While I knew that my life was rapidly changing, I wanted my book to incarnate me—to say, in the words of the poet Matthew Arnold, Time stand still here! But, of course, time doesn’t stand still, nor do we. The reality is that our lives can, and do, change—sometimes dramatically.

For most of my life, I had been a very high-functioning person, but by early 2009, I felt burned out, overwhelmed, and exhausted. As I watched my memoir make its way in the world, though, I became amazed by the changes that were happening in my life. After finishing the book and sending it off for publication, I began to be able to do a great deal more, and with much more enjoyment, than I had before. And now, as I write these words in mid-2011, my life is happier, more productive, and more fulfilling than ever. I have recovered from the burnout and regained my independence, my self-esteem, my energy, and my sense of purpose.

In The Uncharted Path, I listed the tasks with which I was having difficulty and needed assistance. They included:

• Food shopping

• Sweeping and mopping the floors

• Cooking

• Driving

• Running errands

• Going to appointments

• Being alone

• Planning, executing, and transitioning between tasks

• Working at a job

• Making friends

And here is where things stand now.

Food shopping. Going to the food co-op is no longer the sensory-aversive experience it once was. I now use Sonic Defender earplugs whenever I am there, rather than the noise-blocking headset I once had to wear. The earplugs allow me to block ambient sound while being able to hear a person talking with me directly. With my earplugs, I have been able to put sound in the background for the first time in my life and to attend to a person speaking to me without becoming overwhelmed.

As a result, I’ve experienced a new sense of freedom and power. I can now carry on a conversation at the co-op without needing to resort to writing things down. I love going there, buying my food, choosing flowers to plant, and making friendly conversation with the people I meet. I go several times a week and I always look forward to it.

Keeping house. My main difficulty with housecleaning had been the dizziness that attends my vestibular issues. But over time, I began to learn how to move my body slowly and carefully so as to avoid feeling physically off balance. After a while, I adapted so well that I took over all the cleaning myself and no longer needed assistance. Since then, I’ve been vacuuming, mopping, dusting, cleaning the bathroom, and doing all the other household chores. Because I’m one of those very weird people who actually likes these activities, regaining my ability to do them has been a big plus for me.

Cooking. I have rediscovered the fun of cooking. For a long time, my vestibular issues had kept me from it, because I had found it 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 I did when 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, Curried Tofu, and Lemon-Garlic Chicken.

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 without any difficulty.

I’m fortunate in that I live downtown and much is available to me without driving. I love to walk and I can get to many places on foot. But it’s very helpful to be able to drive when I want to, especially since I was able to attend my daughter’s high school soccer games this past fall and to visit people in other towns, including a young man with   cerebral palsy whom I’ve befriended.

One of the reasons that driving has become enjoyable is that I’ve spent the past few years protecting my hearing. Before I started blocking sound, I was spending an inordinate amount of time parsing it and becoming overwhelmed by it. As a result, I did not have the energy for fully attending to my other senses, particularly my visual sense. Driving became difficult because I felt overwhelmed by visual phenomena. Now that I have given myself permission to put sound in the background, my other senses have settled down considerably, and the visual world, far from being overwhelming, gives me great delight.

Keeping track of finances and paying bills. For most of my adult life, I had the responsibility of paying every bill and accounting 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 job. I chose it, because it gave me a sense of control—and because I hugely disliked trusting someone else to get it right.

When I married Bob and quit my job to be a full-time, homeschooling mom in 2003, I let him take over the bill paying and finance tracking, because I trusted him and, frankly, I wanted the break. After a while though, I found that I missed it. So now, in addition to handling the finances for my books, I’ve again taken on the responsibility for paying the bills each week, for keeping track of our expenses from day to day, and for ensuring that there is always sufficient money in our accounts.

Given that these activities combine my love of organizing things, my keen attentiveness to detail, and my innate good sense when it comes to money, I get a lot of satisfaction out of them.

Running errands. I once cringed at the idea of running…an…an…an…errand. The possibility of auditory overload made me very anxious. But now, I look forward to going out and about. 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 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 converse.

Going to appointments. When I have an appointment, 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 take notes and ask for clarification.

One day last year, I went up to the local community college to discuss taking some online courses there. I needed to sit down with an adviser for an hour or so, and before I went, I called the office by means of the text relay service and told the adviser just what I needed. I let her know that if there were too much noise, or if we were too rushed, or if there were too many people in the environment, I’d need to use my text-to-text device.

As it turned out, she was very sensitive to my needs, and we had a very enjoyable verbal conversation in a very quiet place. I decided not to take courses there after all, but I was glad that I was able to explore the option. Six months before, it would have seemed overwhelmingly beyond me.

Being alone. Staying at home while Bob was traveling was my biggest challenge. For a while, I’d go with him on his frequent visits to New York City—partly just to travel out of town once in awhile, partly to see his dad, and partly to avoid being by myself, with all the fear and trembling being alone engendered.

But now, I find myself enjoying the time alone. I love when Bob is here and I also love my solitude when I have the house to myself. I no longer suffer from anxiety and loneliness. In fact, when I am alone and in quiet, I find that I have even greater focus, discipline, and peace than ever before.

What a tremendous change! It was a long time coming.   

Planning, executing, and transitioning between tasks. It’s been so long that I’ve had a problem in this area that I barely remember what it felt like. Now, I plan tasks with ease and I look forward to putting them into action—whether it’s putting together a shopping list before going to the co-op, planning and cooking a meal, paying bills, balancing our house accounts, writing, editing, gardening, or any number of other activities.

What seemed like a