Be Different: Adventures of a Free-Range Aspergian With Practical Advice for Aspergians, Misfits, Families & Teachers (23 page)

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.

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
.

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:

These first two books can give anyone (not just Aspergians) valuable insight into how to behave:

This book will help you sort out what other people mean, by what they aren’t saying:

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:

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

I also like
Gravity Pulls You In
, an anthology of stories about life with autism.

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
.

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 Aspergian 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.