Schools
There are a number of very different strategies for educating and socializing kids with autism. In my opinion, there is a place for every legitimate method because kids with autism are so different and varied. However, schools tend to adopt a single method like ABA (Applied Behavior Analysis) or RDI (Relationship Developmental Intervention), so a place that gets wonderful results for one child may not succeed at all for another. For that reason, you should be prepared to try several schools with different approaches to see what works for you.
Two schools I worked with in the preparation of this book are Ivymount and Monarch. Ivymount School is located in Rockville, Maryland, just outside Washington, D.C. The Model Asperger Program there is run by Monica Adler Werner. If you are in the D.C. area and looking for a school for your Asperger’s kid, you could not do better. Ivymount also has a well-regarded ABA program for kids with larger autistic challenges.
I’ve spoken several times at Houston’s Monarch School, a place for kids with neurological differences. Monarch was the first school I visited where none of the kids had that hunted-animal look I knew so well from my own bad days in high school.
Support Organizations
I wish there were a solid national autism support organization for people on the spectrum, like AA for alcoholics. However, the current reality is that Asperger/autism support is local and highly variable. A few resources are listed here; I suggest you check the resources section of my website for the most up-to-date info.
The Autism Society of America is primarily focused on local outreach, with chapters all over the United States. Their regional and national conferences are really good, with presentations by Stephen Shore, Temple Grandin, Tony Attwood, and other respected people in the field. A list of local and regional chapters can be found on the national website, which is www.autism-society.org.
In New England we are fortunate to have the Asperger’s Association of New England, online at www.aane.org. It runs support groups and seminars, and has an excellent annual conference.
The Global Regional Asperger Syndrome Partnership (www.grasp.org) sponsors support groups all over the country, with special emphasis on New York.
On Long Island, I admire the work of Pat Schissel and AHA. Find them at www.ahany.org.
In the Philadelphia area I like the ASCEND Group, online at www.ascendgroup.org.
Movies
In the introduction to this book, I mention the documentary film Billy the Kid. You can find the movie and the DVD through the website www.billythekiddocumentary.com.
A few other movies I recommend are:
If You Could Say It in Words: www.ifyoucould-movie.com
Temple Grandin: www.hbo.com/movies/temple-grandin
Autism Reality: www.autismreality.org
The United States of Autism: www.usofautism.com
Mozart and the Whale: www.mozartandthewhale.com
Adam: www.foxsearchlight.com/adam
Books
These first two books can give anyone (not just Aspergians) valuable insight into how to behave:
How to Win Friends and Influence People by Dale Carnegie
Etiquette by Emily Post
This book will help you sort out what other people mean, by what they aren’t saying:
What Every Body Is Saying by Joe Navarro
You Say More Than You Think by Janine Driver
People often ask me what my parents thought when I was growing up. My mother has answered some of those questions in her new book, The Long Journey Home. With the publication of her story, she joins me as a proud member of the Random House family of authors.
I always recommend the well-known works of Tony Attwood (The Complete Guide to Asperger’s Syndrome and others) and Temple Grandin (The Way I See It, Thinking in Pictures, Animals in Translation, and others). There are the Daniel Tammet books, Born on a Blue Day and Embracing the Wide Sky. And there is The Curious Incident of the Dog in the Night-Time by Mark Haddon. In addition, these lesser-known books may be of help to you:
Atypical: Life with Asperger’s in 20⅓ Chapters by Jesse A. Saperstein, a young Aspergian
Asperger’s from the Inside Out by GRASP founder Michael John Carley
Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson
Of Mice and Aliens: An Asperger Adventure (Asperger Adventures) by Kathy Hoopmann
Blue Bottle Mystery: An Asperger Adventure (Asperger Adventures) by Kathy Hoopmann
Everybody Is Different: A Book for Young People Who Have Brothers or Sisters with Autism by Fiona Bleach
Parallel Play by Tim Page
Songs of the Gorilla Nation by Dawn Prince-Hughes, Ph.D.
The Sensory-Sensitive Child by Karen A. Smith, Ph.D., and Karen R. Gouze, Ph.D.
Alone Together by Katrin Bentley
The Thinking Person’s Guide to Autism and its associated website, http://thinkingautismguide.blogspot.com
Every now and then, people ask why all the first-person memoirs of life on the autism spectrum are by less-impaired people. The answer is, more severely impaired people don’t write books very often. One exception is The Game of My Life, by Jason “J-Mac” McElwain with the help of Daniel Paisner.
There are plenty of memoirs from autism parents. Two that I like are
Making Peace with Autism by Susan Senator
All I Can Handle by Kim Stagliano
I also like Gravity Pulls You In, an anthology of stories about life with autism.
Web Resources
Barb Kirby and the people who created the OASIS Guide to Asperger’s have a website with quite a few resources. Their site provides articles; educational resources; links to local, national, and international support groups; sources of professional help; lists of camps and schools; conference information; recommended reading; and moderated support message boards. The Web resources are in addition to the annual conference, newsletter e-mail, and phone support provided by MAAP Services. Find them at www.aspergersyndrome.org/.
My son, Cubby, and Alex Plank have a project called Autism Talk TV. In their films, they meet various people in the autism world and explore their stories. I’m proud of their efforts, which can be found at www.youtube.com/user/theWrongPlanet.
When Alex was seventeen, he decided to form an online community for young people on the spectrum. That community has grown to have forty thousand members and millions of page views each month. You can join at www.wrongplanet.net and visit Alex’s personal site at www.alexplank.com.
Autism Speaks (www.autismspeaks.org) is the largest nonprofit organization in the autism world. It is dedicated to funding research to remediate autistic disability and offers some community outreach as well. I’m proud to serve on its Science Board, where we consider what studies we should be funding and how we can help people living with autism today.
My friend Stephen Shore is a renowned speaker and advocate for people with autism. He is at www.autismasperger.net.
Steve Silberman writes about autism and Asperger’s, too, and can be found at www.stevesilberman.com.
And Now, a Big Hand for the Orchestra … Acknowledgments
My first book, Look Me in the Eye, was a fairly solitary effort. I didn’t read any other similar books, because I didn’t want my own writing to be influenced by anyone else. After all, it was my life story being related. I didn’t expect that my book would become a guide for teaching Asperger’s understanding and tolerance all over the world. I was flattered when that happened, but I was also worried. Had I given good advice?
Be Different is my answer to all those readers who asked for more insight. Since you asked me to think even harder than I had to for the first book, I felt I should get some help. I’d like to tell you about a few of those helpers and what they did.
First, I should thank the young Aspergians closest to me: my son, Cubby, and his Aspergian girlfriend, Kirsten Lindsmith. Cubby provided many of the story ideas, and Kirsten provided a female Aspergi
an perspective. And then there’s our friend Alex Plank, who came to visit and never left. Alex and I did the train photography on the cover.
I have to thank my old friend Enzo DiGiacomo for providing the locomotives on the Be Different cover. I tell everyone they are my trains, but that’s only because I bought them from Enzo! He has a collection that would be the envy of any railroad aficionado, and these two locomotives from his “grandchildren box” were just what I needed to replace the engines I had as a kid.
Another important contribution came from Louise Collins, who thought up the title Be Different. After all, what is any book without a title?
Dr. Kathryn James and the rest of the Communication Science and Disorders staff at Elms College in Chicopee, Massachusetts, deserve my thanks. Way back in the summer of 2007, Elms was the first school to adopt Look Me in the Eye, which it used in its brand-new graduate autism program. Today, I teach several courses at Elms, and I continue to serve as a spokesman for their graduate program. You can read more on the college website, which is www.elms.edu.
The autism program at Elms consists of classes on campus plus a Board Certified Behavior Analyst practicum at the River Street School in Coltsville, Connecticut. River Street specializes in helping kids whose differences preclude participation in mainstream schools. In particular, I’d like to recognize three friends from River Street for their support and encouragement.
Dr. Kathy Dyer works with kids at Coltsville. She has extensive experience describing autism in children, and she used that knowledge to create the index to behaviors in this book’s appendix.
Rick Sadler, M.D., is the chief psychiatrist for the school. He’s helped clarify my ideas about issues like medication and therapies for the severely impaired.
Dr. Mike Rice is River Street’s head of psychology. He’s helped me understand current therapies like ABA and RDI, and he, too, has been an invaluable source of ideas.
These doctors and I have talked through the issues facing teachers and schools today, and we’ve discussed my own issues and the stories in this book. They were kind enough to be early readers of this book to help spot the most egregious errors of fact or practice.
The next group I’d like to acknowledge are the brain scientists. In the winter of 2008 I was invited to join a research study at Beth Israel Deaconess Medical Center, which is a teaching and research hospital of the Harvard Medical School. I didn’t have any previous experience with medical research, but I believed in the lab’s director, Alvaro Pascual-Leone, M.D., Ph.D. Alvaro is the director of the Berenson-Allen Center for Noninvasive Brain Stimulation (online at www.TMSlab.org) and one of the premier neuroscientists in the world.
He recruited me into his autism studies, where we used TMS (Transcranial Magnetic Stimulation)—focusing high-power magnetic fields into the brain—to induce tiny electrical currents in my neurons, thereby altering the very way I think. Thanks to that work, I gained insight into the inner workings of my mind that few ever know. It’s almost as if I had always been blind, and suddenly the scientists flipped a switch and I could see. From that moment, the world was different for me. My own disability was not as severe as blindness, but the effect of lifting the curtain was, for me, one of the most powerful experiences I have known. Research in the TMS lab offers tremendous promise; Alvaro and his team of scientists are truly pushing the envelope of neuroscience. I’m proud to have made a small contribution to their work.
Alvaro has provided advice and counsel, and insight into the workings of the brain that probably aren’t available anywhere else. I’ve also been assisted by three of his brilliant staff, Dr. Lindsay Oberman, Dr. Ilaria Minio Paluello, and Dr. Shirley Fecteau. Together, they have introduced me to the wonders of neuroscience. It was they who explored the workings of mirror neurons with me, and I participated in some of their studies to unravel the secrets of brain plasticity. Thanks to them, I was able to experience personally the results I wrote about in the chapters on brain plasticity. More recently, my son, Jack, his girlfriend, Kirsten, and Alex also joined the TMS studies. The experiences I have had and observed in the TMS lab have influenced me as much as almost anything in my life.
Next I’d like to thank Monica Adler Werner, Bonnie Beers, Lisa Greenman, and the faculty of the Ivymount School in Rockville, Maryland, for their invaluable feedback about this book. They read early versions of the manuscript and gave me an educator’s perspective on my story, something I didn’t have before. In addition, they have provided one of the teaching guides that accompany Be Different (available on the Random House Academic website and at www.johnrobison.com).
John Barone and the staff and students at the Monarch School of Houston also made a big contribution to this work by exposing me to their thoughts and ideas. Monarch was one of the first schools to adopt Look Me in the Eye, and one of the first schools to ask me to speak to its students. From that beginning Monarch developed an excellent Leader’s Guide for Look Me in the Eye, and I hope the school does the same for this book. Monarch’s greatest gift to me is probably the student perspective. Much of the Leader’s Guide was actually developed in conjunction with the students themselves; doing so was a remarkable experience.
I’d also like to thank the moms and teens who read this manuscript and offered suggestions. They read my stories, told me which ones were funny and which weren’t, and offered their own ideas as to what the stories really showed. Some moms subjected my stories to actual kid testing, with their own children as readers. The book could not have reached its final form without them.
A few of the moms I’d like to acknowledge are Kyra Anderson, Drama Mama, Maria Polino, Kim Stagliano, Pam Victor, and Jess Wilson. These moms—and others I have not been able to name—continually amaze me with their energetic and tireless advocacy for their kids and kids in general. They have certainly given me the impression that moms of today perform at a higher level than the moms of my own childhood, though I’m sure those older moms would disagree.
Thanks to Mark Roithmayr, Peter Bell, Marc Sirkin, Geri Dawson, and the rest of the staff of Autism Speaks, for naming me to the organization’s Science Board and thereby exposing me to some of the best minds in the world of autism science, therapy, and medicine.
I’d like to recognize all my geek friends and dads, folks like Bob Jeffway, Dave Rifken, Neil Fennessey, Rich Chedester, and all the rest who listen to my bizarre stories and come back with tales of their own.
My parents (including my stepmother, Judy) deserve mention for raising and partly civilizing me. My father died, but my mother and Judy are still with me.
I’d like to thank my ex-wife Mary for sharing the early part of my life and raising Cubby with me, and my ex-wife Martha, who still likes me enough to help with ideas and proofreading. I’m heartbroken that we failed to stay married but eternally grateful that we remain friends.
No acknowledgment for the recent past would be complete without a mention of the people who stood by Martha and me these past few years. I particularly want to thank Paul Picknelly and Bill Wagner. So much banking and business is impersonal, but those two friends put the numbers aside and reached out a helping hand without a moment’s hesitation in our time of need. If the tables were ever turned, I would be proud to do the very same for them. I also owe a great debt of gratitude to Rick and Elaine Palmer, Gene Cassidy, Rick Colson, and all my other friends who were there for us. We would not be where we are today without all of you.
I’d like to recognize Ann Dawson, who was with me for part of this journey but chose a different path halfway through.
On a brighter note, I owe thanks also to my friend Jan Anderson, who talked through many of the ideas in this book and who continues to work with me setting up professional development programs in schools.
And I mustn’t forget the crew at Robison Service—I depend on all of them to keep the company running when I am away. That’s happened more and more in recent years, and I am so proud everyone at the company has risen to the challenge.
Thanks to David Lavin, Sally Itterly, and the rest of the folks at the Lavin Agency for their efforts to keep me out there speaking before colleges and organizations. Without that, I would not be exposed to the ideas that turn into stories.
Finally, I’d like to recognize Rachel Klayman, who began the editorial process at Crown, and Mary Choteborsky, who finished it. Then there is the rest of the team … Crown head Maya Mavjee; Tina Constable, who remains my publisher; Whitney Cookman, who made another fine book jacket; Lauren Dong, who returned to design the interior layout; Linnea Knollmueller, from production; Robert Siek, from production editorial; Stephanie Chan, my assistant editor; Adam Goldberger, the copy editor; Linda Kaplan and Courtney Snyder, in foreign rights; Orli Moscowitz, at Random House Audio; Sarah Breivogel, in publicity; and everyone else at Random House who worked to make my books the successes they are today.
Back in my hometown, I want to thank the staff of Collective Copies of Amherst for their tireless work producing many intermediate copies of this book as I’ve created it. Even though the book was written electronically on a Mac, I still feel the need for real printed copies that I can refer to and mark up as I go along.
Then there’s my younger brother, Augusten Burroughs. I would never have learned the art of storytelling if I had not had him as my very own captive audience long ago when we were children. Neither of us would be where we are now if not for Christopher Schelling, our friend and literary agent.
Last of all is a special thanks to Maripat Jordan for listening to my stories and understanding.
Woof.
John Elder Robison
December 2010
Be Different: Adventures of a Free-Range Aspergian With Practical Advice for Aspergians, Misfits, Families & Teachers Page 18
