Preface from
Been There. Done That. Try This!

Dr. Tony Attwood

Working on this book has been enlightening, inspiring and, most of all, fun. The original idea was to explore and apply the great wisdom on Autism Spectrum Disorders (ASDs) that has not been published in academic journals or textbooks but has been acquired over the lifetimes of those who have Asperger’s syndrome. They are the great Aspie mentors who know ASD from the inside; they have “Been there, done that,” and from their wisdom say, “Try this!” They provide advice and encouragement that has far greater credibility, empathy and value than the advice of neurotypical parents and clinicians. Read this book and be enlightened.

Craig R. Evans

In 2003 I met my first (amazing) Aspie. His name was Nolan. At 13 he was reciting Latin genus species names of animals and lining then up in rows based on size, color, foods consumed or just alphabetically (in English or Latin). He’d phonetically sounded out the animals’ names and learned their stories after reading about them on his Animal Facts cards. At the same time, Nolan was creating different combinations of mythical (futuristic) animals on a website called SPORE. And he was drawing astonishing cartoons of his favorite pets (Australian sugar gliders). The zoo was his second home. I was learning that Nolan is a lot like his mother: artistic, brilliant, funny, creative and loving. But unlike his mom, Nolan is challenged. Between allergies, sensory issues and severe anxiety, daily life was a battlefield. After raising two neurotypical kids in my first marriage, I’d never experienced anything like this before. I needed to find some answers.

An in-depth scan of the web turned up little more than a few autism associations, notices of fund raising walks and sketchy discussions of possible causes and the hope for a cure. Oddly, there was nothing about living with autism. In order to learn how to deal with Nolan and the explosion of children like him, I needed to change that.

Nolan became my stepson in 2007 when I married his wonderful mother. In 2008, I launched Autism Hangout, an online discussion forum that reports news, complies facts and community-submitted personal experiences, and invites ongoing discussion to discover insights on how best to deal with the daily challenges of autism. My mission was simple: I wanted to find ways for Nolan—and others like him—to “thrive with autism.” And those messages needed to be shared with a shell-shocked autism community. So my journey as a journalist began.

I decided to videotape my findings in short (under ten-minute) video reports. After posting a few, my instincts were confirmed. The videos were getting hammered—some garnered more than 1000 views in a 24-hour period. Today, there are close to 500 videotaped reports at Autism Hangout, not all mine. But all focused on relevant, positive, helpful messages.

I’ve interviewed some amazing people along the way: authors, autism experts, medical professionals, occupational therapists, teachers, caregivers, speech and language pathologists and successful/inspirational/thriving people with autism. Two things I immediately noticed they all had in common: hope and a positive attitude. So in capturing their messages (on video) and putting them out there, I knew it was going to be possible for all of us to learn to thrive with autism. And then I met another person who rocked my world: Dr. Tony Attwood.

Sometime around 2009, I’d written Dr. Tony (in Australia) and invited him to record answers (via Skype) to questions about autism that were submitted by Autism Hangout members. He immediately agreed, acknowledging the importance of dispersing encouraging findings, techniques and treatments as quickly as possible. The “Ask Dr. Tony” show became a reality. Many of those programs have since received tens of thousands of views. And the grateful comments from hundreds of viewers confirm their helpfulness…and hopefulness.

During one of those recorded conversations, Dr. T brought up the concept of “Aspie mentors”—someone older with Asperger’s/High Functioning Autism (HFA) looking to help younger spectrum dwellers face the same challenges they encountered and overcame earlier in life. Talk about hopeful! I jumped on it!

We were pretty sure, starting out, that we’d be able to locate “qualified” Aspie mentors. Our “qualification” was simply someone diagnosed with Asperger’s (or HFA) who had found satisfaction in life. Satisfaction could be defined many ways: a good job, money, a fulfilling marriage, and peace. But we discovered something else that provided enormous satisfaction. Something remarkable.

Almost without exception, the mentors who took part in this work were already mentoring. Having lived through the proverbial dark ages of ignorance towards their needs and predispositions, without exception, this group was already actively engaged in giving back in order to help others like themselves avoid stress. Mentoring is one of the many ways they find fulfillment.

Initially, the thought was to assemble Aspie mentors in cities across the country. Monthly meet ups could be arranged where junior Aspies could meet with senior Aspies and learn (from their life’s experiences) how to navigate common Aspie-related issues (such as anxiety, self-esteem, making and keeping friends) to avoid stress. But I quickly found out that the databases necessary to make that sort of event happen were years away. However, it wasn’t long until I arrived at the idea of a book—a “primer”—of Aspie mentor wisdom, which might someday help pave the way for meet up groups.

So here, with this first book of Aspie wisdom, we start. For me, Dr. Tony and Anita and hundreds of thousands of next-generation Aspies, this book is a dream that’s come true.

I’m hopeful the insight and wisdom of the compassionate, brave, persevering souls that contributed to this book is clearly communicated to those on the spectrum following in their footsteps. And I’m more hopeful the love—from Aspie to fellow Aspie, clearly present in this act of selflessness—is noticed by the world. This is compassion in print.

Thank you, thank you, Aspie mentors, for genuinely making the world a better place. And thank you, Cherri Saltzmann, Mitra Ahani, Kathleen Tehrani and Theresa and Frank Gustafson. None of this could have happened without you.

Anita Lesko

I went the first 50 years of my life with Asperger’s syndrome. Only I didn’t know it! I heard of it two years ago from a co-worker whose son just got diagnosed with Asperger’s. I stood in shock as I read all the signs and symptoms of it. All the pieces of the puzzle suddenly fell into place. The whole picture of my life now made sense! I never fit in. I always knew I was different. I simply never knew why.

It seemed my invisible disorder created endless obstacles. Somehow I managed to develop strategies to overcome them. Perseverance was the biggest one. It has taken me to great heights—15,000 feet to be exact! I got a flight in an F-15 fighter jet in 2006. One of my special interests took me there. In 1988 I graduated from Columbia University. A Master of Science in Nurse Anesthesia has enabled me to have a great career. I’ve been working the past 25 years as a Certified Registered Nurse Anesthetist.

The night I discovered I have Asperger’s, I went to the bookstore. I purchased every book they had about it. Dr. Tony Attwood’s The Complete Guide to Asperger’s Syndrome was the first one I read. To this day it remains my Bible of Asperger’s. It’s as if Tony knew me from the second I was born!

I then went for a formal diagnosis. There was no support group in my area, so of course I started one. I wrote my memoir/inspirational book Asperger’s Syndrome: When Life Hands You Lemons, Make Lemonade during a two-week vacation. After seeing my manuscript, Dr. Temple Grandin called to ask about including me in her new book. Different…Not Less was published in April 2012, and I am Chapter 7.

Someone told me about a great website: autismhangout.com. Wow! Indeed it was great. There were hundreds of educational video clips in short eight- to ten-minute segments, and included there was Dr. Tony Attwood, in a series called “Ask Dr. Tony.” I sent the founder, Craig R. Evans, a copy of my book, and he then contacted me to do an interview. I admired Craig for all he was doing for autism. I later expressed my desire to help others on the spectrum. I wanted to do something on a global level. Craig said he might just have what I was looking for.

Two weeks later I received an email from Dr. Tony Attwood. He, too, had a dream on a global scale, to gather all the “older” Aspies to provide their wisdom to the younger ones. We had “been there and done that,” and now would share our wisdom to “try this!” I was ecstatic—the project was going to be me, Craig and Dr. Tony.

We immediately went to work. First we assembled a list of categories of issues that most affected Aspies daily. A survey was then created based on these categories, and field tested on 50 Aspies. I became quite proficient at rounding them up. Dr. Tony participated in this as well, tweaking the survey with more categories.

Now the survey was ready for launch. I recorded a video clip explaining the need for this project. I got it everywhere Aspies would see it. We had over 322 responses, which was strong statistical data. A never-before-conducted study had been accomplished.

Meanwhile, I was assembling the group of Aspie mentors. I gathered quite an impressive list—a “who’s who,” in fact: Dr. Temple Grandin, Dr. Stephen M. Shore, Dr. Lars Perner, Alexis Wineman, and many more. I started with Aspies with whom I was already connected, and Kathleen Tehrani (autismbrainstorm.org) directed me to other appropriate mentors. Instructions for the mentors were then prepared. Each was to write a minimum of four essays, choosing from the 17 categories. The essays were to be a maximum of 600 words, which would provide quick, concise wisdom to the reader.

Now came the really exciting part—the essays began arriving. I was thrilled from my Aspie point of view, and started feeling really connected. This was incredible advice from successful Aspies, like a global support group.

Most of the Aspie mentors were diagnosed late in life. Like myself, they all managed to succeed despite the obstacles. It is the wisdom that we gained in managing to do this that we want to pass on to the young Aspies. It is a different, more complex world today; our youth need all the help they can get. This book will unite Aspies around the world in a historic movement. This is only the beginning.

Equally important is educating the public about Asperger’s. The term “Asperger’s” has now been removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and replaced with the term “Autism Spectrum Disorder,” but we shall always be Aspies! This book will provide insight into the Aspergian mind. People will finally see how we experience the world around us. We have many gifts, and with those we’ve made this a better world; we have created electricity, motor vehicles, computers, and many conveniences of modern life. However, the severity of the sensory issues will truly become apparent, and I hope that people will now recognize just how profoundly we are affected. This book is not only for other Aspies. It’s for parents, educators, therapists and medical personnel—anyone having contact with Aspies.

This book, full of Aspie wisdom, is a dream come true. I set out to help hundreds of thousands of Aspies around the world. This is only the beginning, the first step to unite us. We have a voice that wants to be heard: here come our first words, which will resonate around the globe. We are connecting with each other and, even more far-reaching, we are allowing the world to see we have hopes, dreams and feelings too. We belong on this planet, just like everyone else.

Addendum: Words are only one form of human communication. In addition to the submitted essays, Aspie mentor artists from around the world freely contributed artwork to this book. This is included towards the end of the eBook. It is our hope that through both reading and seeing how stressor issues feel to someone on the spectrum, all of us will come to a deeper, more compassionate understanding of what daily life is like.

REFERENCES

Attwood, T. (2008) The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publishers.

Grandin, T. (2012) Different…Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s and ADHD. Arlington, TX: Future Horizons.

Lesko, A. (2011) Asperger’s Syndrome: When Life Hands You Lemons, Make Lemonade. iUniverse.