Ingenious Minds enters the lives of savants: individuals who possess an extraordinary ability in areas such as art, music and mathematics, while also suffering from intellectual and developmental disabilities.
John Robison never had a high school degree, but he worked as a highly skilled mechanical engineer designing sound equipment, special effects, cutting-edge toys, nuclear test apparatus, and medical lasers.
John is a savant with Asperger’s Syndrome, which has given him a preternatural understanding of mechanics, but has made his social and work life exceptionally challenging. For more information about this episode, visit here.
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.
Autism Speaks Science Board member John Elder Robison will be appearing live on TRU TV’s IN SESSION, coverage of the Odgren murder trial at 2:20 EST today. John will be talking about autism and its role in random violence. This is an unusual case because there was no bullying, and the killer did not even know his victim. Find out what really happened at Lincoln Sudbury High School; how Asperger’s may influenced the killer, and why, this afternoon.
Have you seen this new University of Wisconsin study that correlates an increased prevalence of autism with greater household affluence? This isn’t the first study to reach that conclusion. But what does it mean? Many researchers dismiss research like this by saying wealthier people have more resources to get an autism diagnosis. They say more educated people are more likely to pick up subtle differences in their kids. And perhaps they’re right. Does that account for all the difference?
John Elder Robison, an author who has autism and serves on Autism Speaks’ Scientific and Treatment Advisory Boards, recently posed this question and offered his thoughts on Psychology Today.
Read more and comment on John’s post here.
This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. (*Editor’s note: Autism Speaks typically uses person-first language. Alex prefers the term “autistic adult” to describe himself.)
After years of wondering why I was different from the other children, I was finally diagnosed with Asperger Syndrome at the age of nine. I tried to find other people like me on the Internet, but was disappointed at the resources available for connecting to other individuals with autism.
Consequently, I decided to create an online community for people with autism. I was living at my grandparents’ house at the time and they didn’t have internet access, so I had to ride my bike to the library just to work on developing the site. Since I started Wrong Planet, more than 37,000 people have registered as members.We get around two million page views per month.
I graduated from George Mason University with a bachelor’s degree in Film and Video Studies. My senior project was a documentary on autism. One thing I have always wanted to do is create a TV show about autism.
Autism Talk TV is a new online television show with the goal of spreading awareness and educating the public about autism. I created this television show because there really wasn’t anything like it in existence. Autism Talk TV will provide in-depth coverage of all issues relating to autism. Jack Robison (John Elder Robison’s son) and I attend autism conferences around the country and document people’s stories in crisp high-definition video, which I then edit into seven-to-10 minute segments.
I am continually impressed by the diversity of the autism community. Autism Talk TV gives a unique look into the varied lives of individuals related to autism and provides insight for those of us already living with autism.
Autism Speaks and WrongPlanet.net have graciously agreed to sponsor Autism Talk TV and we hope this partnership will help our show to reach as many people as possible.
Here is the latest episode of Autism Talk TV, which features an interview with Wired magazine writer Steve Silberman, who wrote a very popular article called “The Geek Syndrome,” which chronicled the rise of autism in Silicon Valley. I look forward to hearing your thoughts.
Check out Wrong Planet’s YouTube channel, where Autism Talk TV is hosted.
How does genetic research benefit people living with autism today? And why do scientists do autism research on mice?
Those are two of the questions I discussed with researchers at this year’s IMFAR autism science conference. We’ll start with genetics, an area of study that’s often misunderstood…
The available evidence suggests that autism has both genetic and environmental components. When you study autistic minds at the cellular level, it’s possible to find many subtle differences between the brain cells and structures of people with autism and our typical counterparts. Researchers are working hard to look at those differences and why they occur. At first, scientists thought we were born a certain way, but that thinking has evolved. Now most scientists believe our genes give us a predisposition toward something but both genes and the environment shape the final result.
Adding to the complexity is that “environment” is a catch-all word for many different things, including the air we breathe, our food, our water, and even the social community where we’re parented and raised. We are truly the product of the genetic material we start with and everything we encounter from that point forward.
Researchers have been cataloging autistic differences for some years now. Essentially, they start with the observable manifestation of a difference (like ignoring the people around you or failing to communicate in the normal ways) and work backward until they find a possible biological reason why. For example, a first clue might be an area of the brain that’s too large or too small. Research biologists look at smaller and smaller structures until they get to the smallest difference, which might be an error in the DNA code for those cells.
Having found an abnormal part of the brain, and a possible genetic explanation, they now need to test their ideas out. That’s where the mice come in.
You may have read stories about our gene splicing and engineering skills. Genetic engineering has given us many things, from cloned sheep to drought resistant corn. It also gives us a powerful tool to study complex disorders in humans. In these experiments, mice stand in for people. By introducing the genetic mutations we discover into mice, we are able to observe changes in their brains and even their behavior.
As it happens, mice are uniquely suited for this work. They are genetically very similar to humans, with over 99% similarity in the areas of the brain we’re studying in autism research. Almost every human gene has its analogue in a mouse. Mice are also social animals, making it possible to observe the impact of genetic changes in their behavior. Finally, mice grow fast and are relatively inexpensive to raise.
The human genome has about 3.2 billion base pairs, with about 25,000 actual genes. In a stroke of great fortune for scientists, almost every human gene can be found in a mouse. Mice have fewer base pairs than humans, but their gene count is about the same. Scientists can insert actual human DNA into mice genes and then breed a population of altered mice for study. This sort of work has been extraordinarily valuable to medical science, giving us insights we just couldn’t get any other way.
When we introduce a human genetic aberration into a mouse we are able to see for sure whether that change introduces a structural change in the mouse’s brain. But more importantly, we get a chance to learn how such a change impacts the mouse’s behavior. Indeed, we are finding genetic differences that do actually translate into autistic behaviors in mice. For example, some differences make normally social mice totally ignore other mice in a cage. Other differences make the mice wring their “hands” and flap in a pattern of behavior that’s striking similar to human autistic stimming.
Once scientists have a mouse that exhibits a particular autistic trait, it is then possible to experiment with therapies to correct the problems. That’s where we are now with a number of genetic differences associated with autism. We are also able to study the relationship between a genetic difference and the environment with mice.
Some of the best-known examples of this work can already be seen in the grocery store, or the hardware store. Just look at the label warnings that tell you repeated exposure to a certain chemical causes cancer. We see those warning labels on packages everywhere. We identify cancer-causing chemicals by exposing mice to a particular compound and seeing if they develop cancer. In the autism world, researchers have looked at exposure to high levels of lead, mercury, and other chemicals to learn how they affect the developing or developed mouse brain.
One day, thanks to this sort of research, we might have labels that say, “Warning – Exposure to xxxx can cause autism.” There may indeed be environmental toxins that trigger autistic regression in people, and there may be chemicals that make autism like mine worse. If I knew what they were I’d be sure to avoid them – any of us would – but science needs to identify them first.
We know some chemicals are dangerous. Most of us already avoid heavy metals and other known toxins. My concern is that we may find other common but currently ignored compounds that are safe for some people but dangerous to others of us on the spectrum. For many of us, that knowledge cannot come soon enough.
On a hopeful note, we can also try various drugs, some of which can minimize or fix damage that started in the genetic code. For example, researchers have recently found that people with autism have excessive brain plasticity. Plasticity is the ability of your brain to change in response to life circumstances. Plasticity is essential to learn new skills, but too much of it can prevent you from learning much at all, because your mind can’t “take a set.”
We know how to create mice with excess plasticity, and we are now studying the effectiveness of drugs to reduce plasticity in abnormal mice. It’s both safer and faster to try these new drug therapies in mice, because they develop so much faster than humans. That work may – hopefully – lead to promising discoveries that can be tested in humans and perhaps ultimately lead to new therapies for that particular component of autism.
It’s important to keep in mind that we are not creating “autistic mice.” Autism is an extremely complex disorder, to the extent that many people say no two autistic people are the same. What we’re doing is modeling specific autistic differences by finding genetic codes that are associated with them.
That sounds easy, but it’s not. One problem is that a social behavior – like ignoring your fellow mice – might be associated with more than one genetic difference. In humans, we have hundreds or even thousands of subtle differences associated with autism. And no one genetic difference is common to all of us.
That’s why this is such a hard problem to unravel. We can isolate a difference, and even develop a therapy to fix the changes it causes, but that difference may only be present in 1% of the autistic human population. So what do we do for the other 99%? We continue our studies of mice and men, I suppose.
Some people are critical of genetic research in the field of autism, because they fear it may lead to prenatal screening and the abortion of autistic fetuses. I participated in many discussions last week, and I can say with certainty those ideas were not even on the table for the scientists involved.
Others criticize genetic studies because they think (wrongly) that the work won’t benefit anyone living today. However, the stated goal of much of today’s work is indeed to help the current autistic population.
No one can say what the full ramifications of any particular work may be, but I hope the ideas I’ve shared here make the importance of ongoing genetic research clearer. There is indeed a very good possibility that genetic research today will lead to therapies to mitigate certain components of autistic disability well within our lifetimes.
I sure hope so.
To read complete coverage from IMFAR, please visithttp://www.autismspeaks.org/science/science_news/imfar_2010.php.
Read John’s other IMFAR blog post here: A World of Geeks – IMFAR 2010.
What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle aged people with autism need? What do they get? Are they happy?
John Elder Robison, an author who has autism and serve on Autism Speaks’ Scientific and Treatment Advisory Boards, recently blogged about an ambitious study, headed up by psychiatrist William McMahon of the University of Utah, which attempts to find answers to these questions.
Read more and comment on John’s post here.