|Photo © barbara w | Flickr/Creative Commons
[image: Hands on a typewriter keyboard, at a sunny wooden desk,
next to a drink on a crocheted white doily, amidst some plucked green leaves.
The last decade has seen a blossoming of blogs, articles, books, and documentary films about autism, authored by actually Autistic people. This is an exciting time of growth for Autist-created content about autism, and I want to encourage all Autistic people to document their lives: whether in a private journal, or to share with the public.
There are great personal and community benefits that come from Autistic people writing about our lives—especially when we write about emotions, victories, and challenges and not just the factual events by themselves, although any autobiographical writing is helpful to the writer as well as to others if they decide to share what they’ve written.
Michel Foucault, the postmodern philosopher, wrote in Technologies of the Self:
“Writing was also important in the culture of taking care of oneself. One of the main features of taking care involved taking notes on oneself to be reread, writing treatises and letters to friends to help them, and keeping notebooks in order to reactivate for oneself the truths needed.”
Centering the Narrative – How Writing About Your Life Benefits You
There are many benefits to writing about your life, even if you choose not to share that writing with anyone else. Possibly the biggest benefit of writing about your life is that you finally get to be the center of your own story. So many of us grow up with other people defining us, and telling us who we are, and what is expected of us. Writing about your life might be the first time that you get to sit in the captain’s chair of your own life.
You are also the expert in your own life. Writing about your life, and exploring your emotions around things you have done, and things that have happened to you, helps you to see how much more you know about your life than other people. Or, just as importantly, you may not yet be the expert in your life, but writing about yourself helps you to become that expert. Many people find that writing the stories of their life helps them to see patterns, and discover cause-and-effect they hadn’t been aware of before.
Allowing other people to “invent” our life stories for us leads to problems when those explanations do not accurately depict our lived experience, as White and Epston discuss in their book, Narrative Means to Therapeutic Ends. Writing our own stories “challenges the boundaries” between what the authors call “local knowledge” and “expert knowledge.” “Expert knowledge,” according to White and Epston, belongs to the person who owns the vocabulary to describe a subject. An example they give on page 189 of their book is how medical professionals “transcribe” the language of a patient, for example, changing “feeling miserable” to “displays low affect.” “Eventually, the patient’s experience is not recognizable,” they tell us. Writing about our own lives is a form of “retranscription” that takes back our lives and experiences from others, putting our lived experience in our own words, and thereby placing or reinstating us as the experts on our own lives.
Every piece of your life’s journey has worked together to make you the person you are today. When you write about your journey and how it has affected you, you uncover and clarify your values and priorities. It might sound illogical, but in documenting who you are, you discover who you are. Seeing things written down on paper or in pixels on a screen can help you to see that you have ideas and experiences of value to yourself and others. Even if you never show your writing to someone else, documenting your observations about events in the world and in your life helps you to feel accomplished with a sense of having made a mark on the world. What’s more, re-visiting your past with the wisdom you have gained through the years can help you to make sense of things that might have seemed a meaningless jumble before. Writing your life stories helps you find more meaning in life and uncover your own personal “laws of life.”
Writing your feelings and history can be cathartic and therapeutic. It can give you a safe place to address your traumas and work toward healing them. Many of us who have been through therapy have found the standard pace too invasive and emotionally overwhelming. When using autobiographical writing to uncover and work through traumas, you get to set the pace of disclosure.
As Rasmussen and Tomm noted, “Perhaps there is no other system of psychotherapy in which the client has so much control over the rate, depth and intensity of his or her personal therapeutic work.” In her book recommended later in this article, Bolton said, “Writing is a kind and comparatively gentle way of facing whatever is there to be faced. You can trust it to pace itself to your needs and wants rather than to anyone else, such as a therapist. It can be private until you decide to share it.”
Not only can writing your stories help you move from victim to survivor to thriver, but there is documented scientific evidence that writing about your life in an emotionally expressive way improves your health, from strengthening your immune system to improved outcomes in asthma and rheumatoid arthritis.
While writing traumas can be intense, you can also write about other times in your life. It can be fun to write about the people, places, and feelings that have been positive for you; and while you are doing that, you will also be developing your writing skills. Everyone’s writing has room for improvement, and strong writing skills help us in a wide range of life activities whether communicating with friends, with employers, with clients, with bureaucrats, and so on.
Finally, all of the above benefits: getting to know yourself better, feeling more competent and in charge of the narrative of your life, addressing and resolving traumas and other problems, reminiscing about the good times, and improving your skills can lead to an increased sense of peace and wholeness overall.
There are a couple of good books about exploring your life through journaling that you may find helpful in this journey:
Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval by James W. Pennebaker, Center for Journal Therapy Inc. (2004)
Dr. Pennebaker is a researcher at the University of Texas in Austin and his work centers around studying the benefits of journaling. Much of the medical research cited in this article comes from Pennebaker.
Dr. Pennebaker’s website: liberalarts.utexas.edu/psychology/faculty/pennebak
The Therapeutic Potential of Creative Writing: Writing Myself by Gillie Bolton, Jessica Kingsley Press (1999)
While Dr. Pennebaker comes at journaling from a hard science perspective, Dr. Bolton comes at it with equal rigor but a more humanities-based perspective. Bolton’s book can be used by either therapists or individuals and does much of what Pennebaker’s book does, but some readers/writers will prefer Pennebaker’s approach and others will prefer Bolton’s.
Dr. Bolton’s website: http://www.gilliebolton.com
Other resources to consider:
- The National Association for Poetry Therapy – Poetry Therapy is the most developed formal therapy that uses creative writing to enact change. The writing therapy includes autobiographical writing as well as poetry and other creative writing. This is a well-developed therapy with established ethics and standards.
- Guided Autobiography – Guided Autobiography is a program that was developed to assist the elderly in documenting their lives. The website has more information about the program as well as a resource section of articles that anyone of any age might find helpful.
- LAPIDUS (The Association for the Literary Arts in Personal Development) – a British association organized by the editors of The Self on the Page: Theory and Practice of Creative Writing in Personal Development, an anthology of accounts from schools and healthcare settings of using autobiographical writing for healing purposes.
Blazing a Trail – How the Community Benefits When You Share Your Life Writing With Others
It takes a lot of courage to share your life stories with others, and you must never feel like you have an obligation or duty to do so. There is so much benefit to just writing about your life for yourself. Even though I am about to talk about the benefits that can come from sharing your life, do not feel pressured by anything I say. Your life is yours, and part of taking charge of your life through writing about it is deciding whether anyone else should see what you’ve written or not.
Sharing emotional stories of your life makes you vulnerable, so you should think carefully about how the sharing will impact your life, your job if you have one, or your future chances of getting a job. Sometimes sharing life stories can attract bullies who use our openness to try to make us feel bad about ourselves. Sometimes people will read your stories and decide you aren’t the kind of person they want to be friends with. I could tell you that those people don’t deserve your friendship anyway, but that doesn’t take away from the pain you will feel at seeing people you thought were your friends pulling away from you.
Only you can decide whether it is worth it to you to take the risk of exposing your personal stories. While sharing your stories can be tremendously helpful to the world, we live in a world of seven billion people, which means there are at least seventy million Autistic people of all ages, genders, nationalities, and ability levels in this world. If even 0.1% of the world’s Autists decide to write or speak about their lives and make that writing public, that’s seven thousand people around the world, writing from a first-hand perspective about their Autistic lives!
Of course your voice is unique and only you can say the things that you can say. And as poet Allen Ginsberg said, “It’s what we least want to share that the world is bleeding to hear.” Your voice and your life matter so much! But with potentially thousands of other Autists out there writing and speaking about Autistic life, you must never feel that you have to do or say what you feel unsafe doing or saying. Your life is yours alone.
That said, there are ways that sharing a life story can benefit other Autists and the rest of the world. The biggest benefit is getting the voices of the experts out there. As I said, you are the expert on your life and Autistic people, collectively, are the experts on Autistic life. No single one of us can define and embody autism completely alone, but the more voices are out there, the bigger and fuller the picture of autism we create together.
Have you noticed that we can talk about some aspect of being Autistic over and over for years before someone finally conducts a research project and adds what we have been saying to the body of scientific knowledge? We get frustrated when that finally happens and so many of us will say, “all they had to do was ask us.” But that’s not how science works. In fact, the research most likely happened because we were all talking about that aspect of our lives. The things we say today in our books and articles and blog entries are tomorrow’s science, because the scientists listened to us and chose which questions to address based on the things our community had been saying.
When we share our stories with the world, we educate the world about our experiences and our needs. This education we offer helps the world meet our needs better. It helps parents understand their Autistic children better. It helps government organizations steer policy, and ADA centers shape available school accommodations.
Writing about our lives and sharing that writing helps to dispel rumors and stereotypes about Autistic people. How many of us have written about empathy? We talk about our empathetic feelings, we talk about not always knowing what’s going on with others but feeling for them when we do know. We talk about the measures we take to avoid hurting other people’s feelings. We care about writing content notes and trigger warnings to help take care of other people’s feelings and traumas. We stress the importance of image descriptions because we care about whether Blind people are included or not. We share the evidence that we do have empathy even when it doesn’t always look the same as most people expect empathy to look.
Sharing our writing leaves a legacy for future generations, both Autistic and not, documenting the struggles of our times. When we write about our lives we are creating a time capsule in words that can be opened any time in the future, near or far in time from today. The world will look different some day. I hope that there will be more understanding and acceptance for us in the future. That means that the things we struggle with and the battles we fight together in generations to come will be different from the challenges and goals we face today. Writing about our lives now will give future generations something to look back on. We are creating history with our words today.
Not only can writing our traumas help us to heal them, but sharing our traumas can help others to heal. When we write about our challenges and struggles and talk about how we solved problems or came to a place of increased peace and self-acceptance, we become a role model for others who are going through similar challenges and struggles. Others can learn from our process and feel less alone with the heavy burdens they carry.
Even in smaller life struggles, we give others tips and tricks. Years ago, Joelle Smith had a list of tips on her web site and I learned the value of making laminated lists of routines. She said she laminated it to be able to write on the list with a dry erase marker. So, for example, if she was going to have blood drawn the next day, she could write “wear short sleeves” on her morning routine list. It’s just a little life story and it doesn’t share a deep trauma (though some of her other writing does) but it has stuck with me for years and helped me so much. Our life stories do not have to be traumatic or intimate to have a deep impact on others.
When we share our life stories we give others courage to share their life stories as well. Someone has to go first and often that act is a trail blaze, encouraging others to share their experiences on the same topic as well. I have noticed over the years that blogs written by Autistic people often converge on the same themes as a thought travels through the community and different writers share their own take on it. These blog posts are not repetitive or redundant because each person brings a fresh perspective to the issue with new thoughts, feelings, and experiences on the same topic. Those who have not yet shared any life writing in public are heartened and empowered by seeing others sharing personal stories. Many observers eventually become contributors themselves.
The healing power of shared stories is especially potent among those who have been disempowered, demoralized, or disenfranchised. In Bolton’s book, she writes about the power that comes from writing. “[Therapeutic writing is] for patients and by them rather than being done to them. Too much medicine is diagnosis from the outside and having treatments done to the patient.” Autistic people are far too familiar with being medicalized and treated. Writing about our own lives puts us in charge and re-frames our lives from our own perspectives, something Nick Walker emphasized in his important essay about shifting from the pathology paradigm to the neurodiversity paradigm: Throw Away the Master’s Tools.
Bacigalupe wrote about the great importance of personal writing, calling it “relevant to discussions about issues of social justice.” He talked about the empowering, inclusive nature of sharing writing from people who are (as Wright and Chung put it when discussing Bacigalupe’s work), “inherently subject to discrimination and oppression” with those in positions of power. Bacigalupe writes, “Writing and written text constitute and actively shape our lives, defining our identities and location in the larger social context.”
Whether these stories are shared in books, scripts, articles, or blog entries, they open the way for a dialogue in the community about the issues raised in writing. Autistic book clubs, movie nights, Twitter chats, Facebook forums, and blog comment sections are great places for people to take in autistic words and give back to discussions about aspects of our lives and being that run quite deep. Sharing autobiographical writing helps to build community with shared references and connection over linked issues.
Whether you write your life or not, whether you share that writing or not, these are very personal decisions that only you can make. But know that there is benefit to you if you choose to write about your life and benefit to the world if you feel safe and good about sharing your writing with others.