I’ve just come from a morning at the Parents/Families/Community conference that’s associated with the big IMFAR autism science meeting. The conference moves around every year (some of the scientists have a reputation for getting wild) and this year we’re in San Diego. I flew in late last night just in time to sleep three hours and get up bright and early for the cab ride to the University of California at San Diego.
As long as I remain functional, I will be reporting on events here and at the main conference for the next three days. In addition, I hope to visit the San Diego container terminal and perhaps capture novel and exciting images of shipping and transportation.
As much I love ships and trains, I recognized my commitment to autism science and dutifully appeared where I was supposed to be, before I was supposed to be there. I was just in time for the keynote sessions, which I found totally fascinating.
The first talk I’d like to share with you concerned a program called PEERS, which was developed by Liz Laugeson, Psy.D. and Fred Frankel, Ph.D. of UCLA, and presented by Liz at this morning’s session.
PEERS is a science-based program that helps kids make friends. I say its science based because she actually tested and proved out the various concepts in PEERS through trials. By doing that, she was able to quantify what worked and what didn’t.
And that, folks, is a really important thing in the world of therapy.
Most therapists who work with folks on the spectrum do not have autism themselves. Therefore, things that may seem obvious to them may be totally obscure to the folks they are trying to help. Consider the example of a teen who has trouble getting into conversations with strangers.
A person who does not have autism instinctively reads the non verbal signals from people around him. He knows when to speak up and when to be quiet, and he knows how to join a conversation smoothly. At least, that’s the idea. A therapist who grew up with those skills naturally assumes everyone else is similar. That being the case, conversational skill is simply a matter of polishing one’s skill.
Unfortunately, for most autistic people, “polishing” does not work. We lack the ability to read other people, so “watching and slipping in smoothly” is not something we can do at all, without special training and a lot of practice. Yet that deficiency may not be at all apparent to a nypical therapist, even after he’s studied autism. Therefore, the advice that worked for him may totally fail for us, and he may not have any idea why, except to say “we just can’t get it.”
That’s where science and evidence-based therapy development come in. Researchers can try different ways of helping people solve problems, and then measure how well that training works in real life. By testing different strategies, it becomes possible to separate what works from what doesn’t, and to refine what works well into what works better. That is what Drs. Laugeson and Frankel have done with PEERS.
I could cite example after example from the book, but frankly, if you have a personal stake in helping people make friends, I urge you to buy the workbook. It’s written to do group therapy for high school students but it’s immediately obvious to me that the concepts can be used for self-study and even for Asperger adults. I mentioned that to Dr. Laugeson and she agreed but was quick to point out that the work had not been validated yet in adults.
So if you’re an adult Aspergian, or you know one… you can be among the first to try these ideas out. Let me know what you think.
The PEERS workbook is in many ways a clinical version of my “Be Different” book. In that book, I talk about the strategies I’ve used to find success, and how I made the most of my autistic gifts while minimizing my disability. What PEERS does is take those ideas to the next level.
I wrote about making friends from the perspective of my own success as a person with Asperger’s. PEERS approaches the same problem but from the perspective of many young people with autism, not just me.
PEERS was developed with funding from the National Institutes of Health. To me, it’s a great example of the kind of research we should encourage in the autism community. This is work that will be of tremendous benefit to many people growing up with autism now.
Over the next few days, I’ll be looking at all sorts of research. I’ll see work from biologists, geneticists, psychologists, neurologists, and psychiatrists. I’ll even be looking at studies from public health people and statisticians. Stay tuned as I report on highlights to come… after I walk over the check out the container terminal
You can find the book on amazon “Social Skills for Teenagers with Developmental and Autism Spectrum Disorders: The Peers Treatment Manual”
With advice and suggestions from the author, John Elder Robison, this Be Different guide was developed and written by students and faculty of The Monarch School, which is part of the Monarch Institute for Neurological Differences, dedicated to empowering vulnerable individuals with neurological differences to move from dependence to interdependence and make more meaningful contributions in life. In constructing the guide, the class met regularly, read each chapter, and then developed and piloted discussion questions and exercises to explore the themes of the book.
A Conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different
This is a conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
(Crown Archetype, March 22, 2011)
Peter Bell: Be Different has a lot of wonderful advice and insights for young people who struggle to fit in. But for those with more severe forms of autism, “being different” may not be their greatest challenge. Does your advice change at all for kids and families who are living with challenges of classic autism?
John Robison: Be Different is written for people with Asperger’s and what I call “other geeks and misfits.” The principal difference between those folks and others with traditional autism is that they do not have the severe language challenges. The “verbal but socially impaired” population this book speaks to represents the largest group of young people in special needs education today.
There are millions of young people who we might say, “look and sound normal,” yet they struggle to fit in. Until now, no book has spoken to that huge audience. I hope to change that with Be Different. Individuals with severe language impairment may well share the challenges described in this book, but the language and communication issues will be of overriding concern.
PB: If you had been diagnosed with Asperger’s syndrome earlier in life, how do you think your childhood and adolescence would have been different? Do you think your parents or teachers would have treated you differently?
JR: I hope so! Certainly one of the basic tenants of special education is that we recognize the differences in our kids and develop individualized education plans to bring them along. In my day, my differences were dismissed as defiance or laziness. That led to failure in school and low self-esteem that haunts me to this day.
If my teachers had known about Asperger’s, I might have been assigned a guide to keep me focused and moving through school. I might have been given study materials that were actually appropriate for my skill level. With changes like that, I’m sure I could have graduated high school and gone on to complete college. Who knows where life would have led me then?
PB: You’ve met my teenage son, Tyler, a few times, and you two seem to have a strong connection. He was immediately drawn to you, and you showed a wonderful desire to connect with him. In fact, you were decidedly social with him. Do you find yourself drawn to other autistics in a different way than “nypicals?”
JR: Yes, I do. I don’t know how to explain that except to say some of us autistic people recognize our own kind at a very elemental level. When you think of sorting out people by similarity you probably imagine grouping people by height, or race, or even hair or eye color. What people like Tyler and I see in each other is immeasurably more subtle than those superficial traits, and we seem to match each other up instinctively.
I connect with many autistic people, and they with me. It happens enough that there’s no denying the reality of the phenomena, but I can’t explain exactly what we sense in each other or why we find it comforting.
PB: My wife, Liz, has commented that your gaits (how you walk) are pretty similar, but your “autisms” are very different. Why do you think that is the case?
JR: Scientists believe there are many biological and environmental paths into autism. In the next few years we may end up identifying over a thousand genetic variations that are implicated in autistic disability. All those variations lead to a similar set of differences within the brain and the communication and behavioral challenges we observe.
Those brain differences may have innumerable external manifestations. Our distinctive walk may be one of them. Some scientific studies have shown autistic people have uniquely different patterns of speech and characteristic “nonstandard” facial expressions or eye movements. More and more of those characteristics are discovered every day, and the “gait of autism” may one day be a diagnostic feature.
That deep-rooted commonality is one reason I think this book’s appeal is so universal to people with neurological differences. The only caveat to that is that profound speech challenges will always take precedence over the social behavior that is Be Different’s focus.
PB: You mentioned at one point in your book that “language came to me naturally, . . . wisdom was really tough to obtain.” Interestingly, I think the opposite is true of my son with autism—at times he seems to have wisdom beyond his years but his language is severely impaired. What do you make of this difference?
JR: That is the great puzzle of autism. It’s a mystery why many people with Asperger’s share my gift of exceptional clarity of speech combined with profound social disability, and others with traditional autism may have no speech at all. It almost seems opposite, and I can’t explain it except to say autism touches each of us differently.
Tyler’s inability to hold a normal conversation means he has a lot of time to reflect inwardly, to think about the world around him. I have written about how my own social isolation helped me develop the reasoning power that got me where I am today. Given that situation it’s no surprise he seems wise; he has a lot of time to watch and ponder, freed from the constraints of speaking whatever comes to mind from moment to moment. He’s a thoughtful person; it’s just that his language challenges prevent us from hearing and sharing those thoughts much of the time. My situation is opposite. My childhood command of language was so good that people expected matching wisdom, far beyond my years, and it just wasn’t there.
PB: You mention that “Autism in its many forms is not a disease.” However, we know from historical experience that autism can be caused by infections (for example, maternal rubella or influenza during pregnancy) or other environmental factors (for example, thalidomide or valproic acid use). Research also shows that about one-third of the current population of children with autism have a regressive form. Although the terms “disease” and “disorder” are fairly synonymous and generally mean deviations from accepted or “normal” physiological or psychological functioning, is it possible that some forms of autism could be “abnormal” rather than just different?
JR: Sure. I use “difference” rather than “disease” because the latter word suggests a temporary condition, which autism is not. Some diseases can be cured; others kill you. Autism is neither curable nor lethal.
The other consideration is that autism—being a brain disorder—becomes woven into our very being. Our autistic differences shape the way our brain wires itself as we develop and live in response to life’s events. Even if one could magically remove the underlying autistic difference, the “different brain wiring” would necessarily remain. That’s why I don’t think talk of a cure is realistic, while at the same time I work very hard to promote the development of tools, treatments, and therapies to remediate the specific components of autistic disability.
As promising as the future may be, at this moment, those of us with autism must make our best life the way we are today. That is the essential message of Be Different.
PB: Thank you for your description of how predictability is a critical condition for many on the autism spectrum. We think that this may explain why Tyler is fearful of dogs and other domestic pets while at the same time being fascinated by them. He is much calmer with animals on a leash than those that are running free, a distinguishing feature that he figured out himself. Do you think the predictability issue explains his behavior?
JR: I know routine and predictability are really important to lots of autistic people, me included. I believe anxiety is one of our dominant emotions, and in the case of an animal, that anxiety is going to be markedly reduced if the animal in question is under control in some fashion.
Several stories in Be Different show how I addressed those issues in my own life.
PB: Have you started thinking about book number three yet? If so, what do you plan to cover?
JR: My third book is tentatively titled Raising Cubby. It’s a tale of fatherhood, Asperger’s, chemistry, and the Bureau of Alcohol, Tobacco and Firearms. I hope it proves to be an entertaining and enlightening book.
John Elder Robison‘s new book Be Different will be available on March 22nd. In Be Different, Robison shares a new batch of endearing stories about his childhood, adolescence, and young adult years, giving the reader a rare window into the Aspergian mind.
John will be traveling the country to promote his book and could be making a special appearance in a town near you! Here is his tour schedule – we hope to see you there!
Monday, March 28th New York, N.Y.
Venue: Barnes & Noble Tribeca
97 Warren St.
New York, N.Y. 10007
Thursday, March 31st Framingham, Mass.
Venue: Barnes & Noble
1 Worcester Rd
Framingham, Mass. 01701
Sunday, April 3rd North Hampton, Mass.
Venue: Smith College
7 College Lane
Northampton, Mass. 01063
Tuesday, April 5th Rockville, Md.
Venue: Ivymount School Auditorium
11614 Seven Locks Rd
Rockville, Md. 20854
*There is limited space so reservations must be made www.ivymount.org/asperger
Wednesday, April 6th Houston, Texas
Venue: B&N River Oaks
2030 W. Gray Street
Houston, Texas 77019
Saturday, April 9th Nashville, Tenn.
Venue: Westminster Presbyterian Church
3900 West End. Ave.
Wednesday, April 13th Boulder, Colo.
Venue: Boulder Bookstore
1107 Pearl St.
Boulder, Colo. 80302
Thursday, April 14th Denver, Colo.
Venue: Tattered Cover
2526 East Colfax Avenue at
Saturday, April 16th Burlington, Mass.
Venue: Barnes and Noble
98 Middlesex Turnpike
Tuesday, April 19 San Francisco, Calif.
Venue: Books Inc.- Opera Plaza
601 Van Ness
San Francisco, Calif. 94102
Wednesday, April 20th Portland, Ore.
Venue: Powell’s- Downtown
1005 W. Burnside
Thursday, April 21st Seattle, Wash.
Venue: Third Place Books
17171 Bothell Way NE
Lake Forest Park, Wash.
Tuesday, April 26th Madison, Conn.
Venue: R.J. Julia Booksellers
768 Boston Post Rd.
Thursday, April 28th Chicopee, Mass.
Venue: Elms College
291 Springfield Street
Saturday, April 30th Dothan, Ala.
Keynote Speaker CEU Conference
Venue: Wallace College
1141 Wallace Drive
May 11-May15th San Diego, Calif.
IMFAR 2011 Autism Science Meeting - Manchester Grand Hyatt.
Tuesday, May 17th South Hadley, Mass.
Venue: The Odyssey Bookshop
The Village Commons
9 College Street
South Hadley, Mass.
Wednesday, May18 Charlestown, Mass.
Venue: Starr Center
185 Cambridge Street
Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, has a new book, Be Different: Adventured of a Free-Range Aspergian, that will be released in March. In this video, created by Alex Plank, John reads the introduction of Be Different, set to photos from his life.