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.
On April 27, Autism Speaks partnered with PBS’ This Emotional Life to present a webinar called “Growing Up With Autism.” The webinar featured a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) explaining what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill led a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, addressing the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.
If you missed the webinar, we encourage you to watch it online and share your thoughts.
TUNE IN - “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT
Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.
The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community. This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.
To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.
Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.
If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!
This guest post is by John Elder Robison. John Elder Robison is a free range Aspergian male, having grown up in the 1960s before the Asperger’s diagnosis had come into common use. After dropping out of high school, John worked in the music business and the electronics industry before founding Robison Service, a specialty automobile company in Springfield, Massachusetts. Today, John serves as an adjunct professor in the department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts. He has also served on the public review board for the National Institutes of Mental Health, and he is currently involved in TMS autism research at Harvard Medical School and Beth Israel Deaconess Medical Center. John is the author of Look Me in the Eye, my life with Asperger’s. John’s writing has been translated into 18 languages and is sold in 60+ countries. John’s next book, Be Different!, will be published in the spring of 2011. In addition to his autism advocacy work, John is a lifelong car enthusiast, an avid hiker, a photographer, a music lover, and a world-class champion eater. He lives in Amherst, Massachusetts.
Readers of my blog know that I’ve been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I’m a fairly action oriented guy, and I don’t like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I’d have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.
Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.
In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals – should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.
I’ll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it’s modeled on the system developed the NIH. I feel it’s a fair way to allocate limited resources and I’ll surely make the most of my opportunity.
I believe it’s a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone’s expectations. I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I’m off and running!
One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I’m involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today’s autistic population.
There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they’ve totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.
In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That’s going to be a real challenge because the views of different people on the spectrum are so widely divergent.
When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.
At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it’s more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.
Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from “living like anyone else.” To do that, he needs help remediating some of the disabling aspects of his own autism. However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.
I believe each of us should be free to choose therapies or treatments – nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today’s world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.
At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there’s a lot more to be done.
There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal.
Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.
As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.
John Elder Robison, author of bestselling memoir, ”Look Me in the Eye,” is appearing tomorrow (Wednesday, February 24) at 5:30 p.m. at Drew University, in Madison, N.J. The event, which takes place in room 107 of the University Center is free and open to everyone. He will be speaking and answering questions from the audience, followed by a book signing. Robison, who has Asperger’s Syndrome, will be talking about life on the autism spectrum, growing up and finding acceptance, and the latest research he is involved in at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston.
This event should definitely be worth your time if you are in the area. Either way, be sure to check out “Look Me in the Eye” – it is a fun and compelling read.