My Life on the Autism Spectrum
Guest Blog Post originally published by Learn from Autistcs, September 15, 2020
Tracey Cohen is an experienced ultrarunner, author, and speaker, and has competed in thousands of races around the world. She was featured on Learn from Autistics last year discussing some of her experiences growing up undiagnosed, her current advocacy work, and her love of running. Tracey was diagnosed with Asperger’s Syndrome at the age of 39 and speaks regularly about autism to school groups and at conferences. She is the author of several books, including Six-Word Lessons on Female Asperger Syndrome, Six-Word Lessons on the Sport of Running, and the recently-released My Life on the Autism Spectrum: Misunderstandings, Insight & Growth. This week she shared how she’s been surviving the pandemic and the unique, personal nature of her new book.
How have you been doing during the pandemic? What have you been doing to maintain mental/emotional health?
Though I know that I have much to be grateful for, it’s been hard. In 2018, an uptick in family health problems/emergencies caused me to make some added hard decisions including my employment situation. I felt I was finally starting to get back on my own feet when I began a new job at the beginning of 2020 only to be furloughed in late March due to COVID-19 and ‘forced’ to apply for unemployment.
Though I was assured by many that I had ‘earned’ (per my previous employment history) this and had nothing to be ashamed of, the kind words did nothing to assuage my humiliation and shame; I have always tried to pride myself on ‘earning my keep’ no matter the circumstances. I allowed myself a day or two to, what essentially amounted to feeling sorry for myself, before getting myself together and doing some good with the time and opportunity. In addition to the extra care I provide for my family, my days quickly became filled with a lot of volunteer work and tasks that were harder to take care of while working a full-time job. I also found time and inspiration to continue working on what is now my newly published book.
I find that no matter how difficult circumstances might be, I cope better when I am productive and helpful and establish some form of routine. Running, my lifeline among other things, has also helped me and though difficult at times, I have not missed a day. After a month or so after being furloughed and what appeared to be my dubious return to work continued to look bleak, rather than simply wait, I decided to take action and look for something new. Happily, I began a new job in July and remain cautiously optimistic.
Though all of the change, adjustment and additional challenges relevant to the pandemic and life in general continue to be difficult, some days more than others, my running, developing a routine, helping others and forcing myself to take action and move forward even on the most difficult of days is helping to preserve my mental/emotional health.
Your new book My Life on the Autism Spectrum: Misunderstandings, Insight & Growth is described as “up close and very personal.” Can you give an example of how you expose yourself so candidly in this book?
It is all very personal, and essentially everything I share are not topics that I discuss. Some of it, until now, including my time at the institution, are experiences that I have never shared with anyone, including my family. While I am willing to share such private information in order to hopefully help as many people as possible, it has been and continues to be a very painful process; essentially, I am and have been reliving it all which brings the nightmares and more (that have never gone away completely) on full force. I hope that people will understand and respect this for both myself and my family.
How is this book different from your others?
While some of the information in my other two books are relevant to my own experiences, they were not written about me or my family and did not contain such private information. Also, while my previous books, Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s and Six-Word Lessons on the Sport of Running: 100 Lessons to Enjoy Running for a Lifetime are written in the format of and are part of The Six-Word Lessons Series (100 lessons, 10 chapters, every lesson and chapter title written in six words followed by a 40 – 60 word description), my new book, My Life on the Autism Spectrum: Misunderstandings, Insight & Growth is written in more of a free style form and also contains pictures throughout.
Why were you inspired to share your vulnerabilities so publicly?
Since publishing my first book, Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s in 2015, I have had a number of requests to ‘write a book about my own life and experiences.’ Though I have never thought myself worthy, I genuinely want to help as many people as possible. After a great deal of reflection and analysis, I felt that I could possibly continue to help educate, inspire, and bridge the gap between awareness and understanding by sharing my story if I shared the personal details that readers will find in my new book; to write an autobiographical account without my greatest difficulties and vulnerabilities, would be disingenuous and a disservice to everyone I aim to help, educate, and inspire.
What’s something readers might be surprised by in this book?
As I do not generally “read people” well and with there being all different levels of perception, knowledge, experience, and ‘flavors’ of autism, I don’t know what if anything will “surprise” potential readers. My hope (and intention of course) though is that those who choose to invest in my book and myself, will find value in my work. And what would please me greatly would be if readers find that their expectations have been exceeded.
Have you been inspired by other Autistic authors or advocates to tell your story or to live your life more fully?
It was Liane Holliday Willey’s book, Pretending to be Normal: Living with Asperger’s Syndrome (Autism Spectrum Disorder), that, after first learning about autism, really gave me hope and insight about myself and set me on my path if bumpy, to learn more and eventually seek diagnosis. I am eternally grateful, and if I can do the same, even in part for others, I am willing to sacrifice my privacy and risk further judgement and humiliation.
Is there anything else you want to talk about that I didn’t ask?
As people read my story, I am hopeful that all will keep in mind that no matter the misunderstandings and things that have happened in the past (and even in recent years and the present), I cast no blame on anyone nor do I have bitterness or the infamous “chip on my shoulder.” I care deeply about my family, friends, and people in general and am genuine in my efforts to help. While I do not see myself as any great success or otherwise, I have learned, made positive strides in life, and accomplished things I never thought possible. No matter people’s individual circumstances, they must believe that if I can do it, so can they. I don’t suggest anything to be easy, but I do maintain that every positive effort is worthwhile, no matter the outcome, eventually good things will happen. I further want people to know that I am grateful for their interest and support and always appreciate honest feedback. Thank you truly to one and all.
My Life on the Autism Spectrum: Misunderstandings, Insight & Growth
Six-Word Lessons on Female Asperger Syndrome
Six Word Lessons on the Sport of Running
Get in Touch with Tracey
Tracey’s Facebook Page
Growing Up Autistic
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Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.