This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.
I spent this Tuesday in Washington, reviewing autism research proposals. I really enjoy that work, because it puts me among some of the best minds in autism science. In the course of our discussions, an intriguing question arose.
We know autism is far more common in males, but the reason why remains elusive. It’s one of those facts of autism that most people take for granted, and simply accept for what it is. In earlier essays on this blog I have considered possible explanations, from Simon Baron Cohen’s theory that autism is “exaggerated maleness” to reasons why females might be undiagnosed and undetected.
All the explanations I have heard so far do not account for this interesting observation:
If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50. It favors the males. Any autism researcher who has worked with families knows that to be true, even in the absence of hard studies to quantify it. Why?
All of us know families that have all sons or all daughters. We don’t make anything more of that that we do tossing a coin and having it come up heads three times in a row. Just chance, we say. But when you identify a group of families with a trait like autism, and they all have more sons than daughters . . . suddenly it stops looking random and starts to seem the result of something else.
One explanation is that some parents have a son with autism and stop having children. So the girls that might even the male/female ratio are never born. I think that explanation may be true today, but what about the ages before modern birth control?
Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true. The autism diagnosis has only existed for sixty-some years. Yet we do have strong anecdotal evidence. Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives. How many of those individuals are female? Almost none.
Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong. That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side.
Geri Dawson suggested another possible explanation for the male-female imbalance. What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way? The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female. The result – fewer baby girls with autism are born.
To the best of my knowledge, no one has studied pregnancies in families with autism. All that has been studied are the resultant children. We don’t know how many miscarriages may have preceded or followed the birth of an autistic boy. The incidence of miscarriage in general has been studied and it would be interesting to know if families with autism deviate from the norms in that regard.
The son-daughter imbalance certainly ties in with the Baron-Cohen “maleness” theory. If autism indeed an expression of excessively male genetic material, that imbalance might result in more males being born in those families.
I spoke to several scientists and it became clear that this is one of those obvious questions that has never really been answered. There is the general belief that autism families contain more males, but we have no hard data to illustrate the difference. We also don’t have any multi generational data, which could shed light on the heritability of the condition.
In my own family, I have one child, a son with Asperger’s. My father had many Aspergian traits, but he died before anyone thought to explore that possibility. He had a brother, and no sisters. His father also had a brother and no sisters. His grandfather had three brothers and a sister. Is there a pattern there that relates to autism? I really don’t know.
It would be very interesting to see a study that addressed this question. Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .
This post is by Alex Plank
In the latest installment of Autism Talk TV, Alex, Jack, and Kirsten talk about John Robison’s new book, Be Different: Adventures of a Free Range Aspergian. Be Different is must-read and I highly recomend ordering it on Amazon. John’s first book, an autobiography entitled Look Me in the Eye: My life with Asperger’s was an overnight success, landing itself on the New York Times bestseller list.
Unlike Look Me in the Eye, Be Different is a how-to guide aimed at teachers, parents, professionals, and individuals on the spectrum. However, you won’t be disapointed if you are hoping to read more of John’s firsthand accounts that made up the entirety of Look Me in the Eye as John uses his famous stories to illustrate points in Be Different.
Teacher’s Guide for Look Me In the Eye
Look Me In the Eye Study Guide
Autism Speaks Science Board member John Elder Robison is the author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian. You find out more about his IMFAR experience, here, here, and here.
To find out more about ‘Innovative Technology for Autism’ visit here.
This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.
There is a lot of talk about the need for therapies for adults with autism. A review of emerging adolescent therapies suggests that many can be applied to adults with minimal adaption. Testing/validating of what we have will be a lot less costly than developing something new.
More and more, scientists agree that autism is the result of genetic predisposition and a trigger. Many hoped the “trigger” was a simple chemical like mercury, but we are realizing there are both environmental and disease triggers. Unfortunately, knowing they are there does not make them any easier to find. Identifying pathways into autism for a large part of our population remains an elusive goal.
One of the things that pleased me most at this year’s IMFAR conference was the way that advocates and journalists are finally coming together and finding common ground. “As Thinking Person’s Guide to Autism” editor Shannon Rosa said, science doesn’t have a hidden agenda…
This year’s Autism Speaks “Autism Connects” technology competition drew over 130 technical and engineering students to develop tools to help people with communication disabilities. For me, the most important take-away was not the entries themselves but the realization that we have so much to gain by drawing technical people from other fields, like industrial design and computer science into autism research.
For some time we have known that that therapies like ABA teach behaviors, not feelings. For example, we (autistic people) can learn to read a face and realize, “he’s happy,” but that logical knowledge does not often translate to us experiencing the feeling. At this year’s IMFAR Susan Bookheimer of UCLA spent quite a bit of time showing me what imaging studies are teaching us about how we may soon help autistic people feel that happy message and thereby feel happy themselves. That will represent a quantum leap in the power and effectiveness of therapy.
I’ve heard comments about “the rolling walk of autistic people” before. This year I saw results of a study from the University of Fairfield that actually quantified differences in gaits between autistic and NT people. Why do we walk in a sawtooth pattern where NT people walk in a straight line? The researcher had some ideas, but why remains a mystery.
For years people have looked at nonverbal people (autistic or otherwise) and wondered… what’s going inside their brains? If a person can’t talk, they can’t take a conventional IQ test, and rightly or wrongly, many have been presumed intellectually disabled for lack of evidence to the contrary. Today, researchers are using both high precision EEG and fMRI imaging to measure brain patterns in response to stimuli. For example, when a person sees a cat and hears the word cat there is one characteristic pattern of activity. When the person sees a cat and hears dog, the mismatch causes a different activation. We can measure those responses, even in people who don’t talk, and thereby gain insight into how much they are perceiving and thinking, and how fast. Understanding is the precursor to therapy.
This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags. At the stakeholder lunch, we discussed the balance between funding community services and funding science. Without science, all we have to care for the disabled is faith and compassion. The addition of science-based medicine is what’s taken us from life in the Middle Ages to where we are today. Science provides the foundation to make community and family services work better. That’s why we need it.
When I spoke at the luncheon yesterday, I reminded people that we are all sitting here in safety, but in the middle of our country, one hundred million pounds of water are flowing past Red River Landing on the Mississippi River every single second, and the rate is rising still. That flood could cause the loss of the Old River Control Structure, which is what keeps the Mississippi from changing course and flowing to the Gulf at Morgan City instead of New Orleans. If that happens as a result of this historic flood (already greater than any we’ve seen in 80 years) our country could be facing the worst natural disaster in its history.
If you’re a praying person, now is the time to pray for all those people in the Mississippi floodplain. As much as I believe in science and engineering, if I had to lay money on the Army Corp of Engineers or Nature, I’d have to choose nature.
Why Nature? In the world of autism, the brain nature has given us provides the most complex puzzle man has ever attempted to solve. Out on the river, this flood shows once again how all our science and technology sometimes fades to insignificance before the natural world. Yet we go forward with faith that science will bring us the solutions we need, both on the river and in our heads.
On a personal note, I was pleased to see grad students and researchers whose work I have supported through my participation in review boards bringing the fruits of their work to IMFAR. It made me feel like I had a small part in the collective success of our group, and that feels good.
I was also thrilled to see that Alex Plank (a young man with Asperger’s) was filming the conference and he’ll be sharing it soon on the Autism Speaks and Wrong Planet websites, and elsewhere.
In closing I’d like to thank all the friends I’ve made in this community, and also the folks at INSAR and Autism Speaks, who made it possible for me to attend this conference. I’ll see you next year in Toronto!
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.
Autism Speaks Science Board member, John Elder Robison appeared live on TRU TV’s IN SESSION, coverage of the Odgren murder trial yesterday, December 9. John apoke about autism and its role in random violence. Watch this video to find out what really happened at Lincoln Sudbury High School; how Asperger’s may influenced the killer, and why.
This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.
Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media. We’ve invested in our Facebook and Twitter presence, our Ning community, our e-mail newsletters and two rapidly expanding and successful blogs – one for Autism Speaks and one for Walk Now for Autism Speaks. I am seeing some terrific conversations developing and platforms that enable the community to come together in a global conversation about autism.
At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. Through social media, I am hoping to help move this along. You can read our entire mission here: http://www.autismspeaks.org/mission.php
A few months ago, John Robison and I started talking about how we can continue to drive a dialogue and to bring the different and disparate pieces of the autism community together. Right before the IMFAR conference, John called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net. John had spent some time with him and thought that Alex, despite his public criticisms of Autism Speaks, would be a terrific person to involve in this ever expanding conversation. After attending the GRASP benefit event and meeting Alex, I invited him and John to a meeting to discuss some ideas on how we might work together. I eventually spent an entire day with Alex, hashing through a bunch of very cool, social media ideas, including one terrific nugget that has now become “Autism Talk TV.”
The idea is simple really, Alex was already producing a show that would feature a variety of perspectives from the autism community and we wanted to help. Not only did we want to give Alex a chance at creating a successful web show, we thought he was terrific on camera and with a promotional boost, more people might enjoy tuning into his show. Alex’s lively and engaging style as a host felt right to us and we committed to doing some test shows and to act as a show sponsor to help promote the show. As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.
Our expectations are simple: we hope Alex will produce great content in an enjoyable, web-based format and that he will build “Autism Talk TV” into a widely viewed, successful venture. At Autism Speaks, we continue to invest in the entire community and to continue to “listen” and engage the community from all corners. It is my hope that this show will drive forward the conversation and help the entire autism community come just a little closer to each other.
I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!
Check out Alex’s work on Wrongplanet here.