Lauren Brumbach Rothermel has two sons, 12 and 5, the older of which was diagnosed with PDD-NOS in 2000. Shortly after his diagnosis in December, Lauren visited a DAN! Doctor, started him on the GF/CF diet and began intensive ABA. She continues to work closely with physicians and other experts in trying new methodologies related to finding a cure for autism. She also served as president of the Berks Autism Society and spearheaded the first Walk for Autism Awareness in Berks County, that is in its 8th year.
I’d like to introduce you to a new website, Autism360.org. Autism360 is a web-based tool for parents of autistic children. This website gives parents the ability to build a profile of their child and compare their child to others. This tool actually clusters children who share similar characteristics. The best part is that you can see which treatment options seem to work best for children who look like your child. You can then discuss these treatments with your health care providers or try them on your own.
Initially, basic information needs to be entered into the site to set up your child’s profile. You will add things like height and weight. The next step asks you to enter specific information and history on your child. When you are finished, you can do two things. Click on “others like me” to see a cluster of children like your own. This will show you the treatments that have worked and not worked for this group of children. You can also “generate a report”. This is especially useful for therapists, doctors and anyone working with your child.
My son is now twelve years old. I really wish I had a web tool such as Autism360 to use when he was first diagnosed. I remember feeling completely alone and worried that I was the only one who was experiencing these new things. Autism360 connects you to other children just like your child. You learn that your child is not the “only one” and begin to feel much more connected. And you get some useful ideas about treatment options.
I worked on inputting my son’s data one night after the kids went to bed. It was very easy to do. The great thing about Autism360 is that it saves all of your child’s information so you can come back to it later on. It is completely confidential and will generate reports for you so you don’t have to create them yourself! Plus, it’s totally free and we love that!
I urge you to give it a try, you won’t be sorry!
Ballet Serves as Therapy for Those with Autism (Tulsa, Okla.)
As the holiday season approaches, it brings with it a beloved tradition that Tulsans have enjoyed for the past 40 years; Tulsa Ballet’s The Nutcracker. Running from Dec. 11 – 23 at Tulsa’s Performing Arts Center, this remarkable production will enchant young and old alike. The audience is drawn into a young girl’s heartwarming fantasy story filled with sugarplums, snowflakes, toy soldiers, adventure, heroism, and an epic battle between a Mouse King and the Nutcracker Prince. With magical choreography by Tulsa Ballet’s Artistic Director Marcello Angelini and Tchaikovsky’s musical masterpiece, it’s truly a mesmerizing holiday event that the whole family will enjoy and remember. Read more.
The Pole Guy of Northeast Iowa (Waucoma, Iowa)
Nolan Milbrandt is sitting in a computer alcove, just off the kitchen of his family’s farmhouse in rural northeastern Iowa. As he squeezes the edges of the mouse to his Mac, dozens of images of electric utility poles dance across the screen so quickly that they appear almost animated. Read more.
Missing man with autism is found (Mahwah, N.J.)
An 18-year old with autism who was reported missing by his parents was found in a nearby storm water drain after police searched for more than two hours, a lieutenant said Tuesday. Read more.
Commission denies autistic boys center (Parawon, Utah)
The Iron County Commission unanimously denied an appeal by the Ranch at Kiva Pointe, a proposed residential treatment center for boys ages 10 to 18 with autism, Asperger’s Syndrome and other pervasive development disorders. Read more.
SDSU considered a national leader in autism work (San Deigo, Calif.)
Alberto Castro has limited ability to communicate, at least verbally. But, there he was last week, in Shayla Green’s classroom at El Cajon Valley High School, answering simple questions, either by pointing to pictures or pressing yes or no on an “augmentative communication device.” Read more.
Seven thousand two hundred fifty nine point four (7,259.4) miles. That’s how many miles Team Up with Autism Speaks members covered in 2010 to raise autism awareness and funds to support the mission of Autism Speaks. In 2010, Team Up fielded teams with guaranteed entries in events; 2010 Walt Disney World Marathon Weekend, 2010 TD Five Borough Bike Tour, 2010 Chicago Half Marathon, 2010 Bank of America Chicago Marathon, and the ING NYC Marathon 2010. These teams have combined to raise over $776,583. Other Team Up participants competed on their own in endurance events across the country. Overall since 2007, when Team Up was established, our teams have raised over $1.7million to support the mission of Autism Speaks.
Many members of Team Up with Autism Speaks teams didn’t meet until the night before the race, but they ran as a team, united by their commitment to the cause, and their commitment to their children, brothers, sisters, neighbors and friends affected by autism. Every member of Team Up has a story worth telling. Here are a few we would like to share.
Katie Baranek and her boyfriend, Bill Shaffer, trained together and fundraised together. Katie’s family traveled to New York City to cheer them on as they ran the Marathon for her brother Hunter and sister Hayley. Katie and Bill also ran with our 2009 Chicago Marathon team and Katie will be running with our ING Miami Marathon team in 2011. “Running as a member of Team Autism Speaks has been such a great experience and I have been lucky to have been a part of the team for three marathons and three years in a row. I love to run in marathons, but it is so much more special when you run FOR something. I run for Autism Speaks in honor of my little brother and sister, who both have forms of autism and running has given me the chance to not just raise funds for autism, but to also raise awareness within my family, friends and community. Being a member of Team Autism Speaks has given me the opportunity to do something positive with each and every stride I take.”
Don Croteau started running on a treadmill, two to three miles just for some exercise. He then started stretching out his runs. After about three months, he was running 5-6 miles at a time, which he thought was his limit. But when he saw that Autism Speaks had a charity team in the 2010 Disney Marathon, he immediately registered for the half marathon and started training. Don has a beautiful blonde little friend, Molly, who has autism and knows several other families who are struggling with young children on the spectrum. He saw this as a true sign and as a way to anonymously support these wonderful children and their hard working, dedicated families. He also saw it as a way to give back some of his time and good fortune to a very worthy cause, and to give him strength and motivation when he needed it. Don ran for Autism Speaks in the 2010 ING NYC Marathon and is returning to the Disney run in 2011. More icing on the cake for Don, is that he is a slim 185 pounds now, down from 320 pounds. The evening prior to the NYC Marathon Autism Speaks President Mark Roithmayr asked Don why he ran for us. Don looked at him and quietly said…“running for Molly and Autism Speaks just makes me a better man.”
Sisters share a strong bond and this is no different for Meg Brossy and Molly Shirer, two of our NYC Marathon team members. But it is their love for Willie, Molly’s 19 year old son with autism that brought them to the city of New York to endure what most only dream of. Side by side every step of the way it took them seven hours and 17 minutes to complete the 26.2 mile journey for Willie. Molly beamed after her accomplishment saying “Willie is 19 and in early adulthood. I am realizing that he needs to take more steps towards being physically fit. I am determined now to make a “power-walker” out of him. He always attends the annual San Diego Autism Speaks Walks with me and seems to greatly enjoy the experience!”
These stories inspire us all to get up, lace up, and get moving. Team Up with Autism Speaks has limited entries into over 13 events in 2011. It is easy to join and we have a support team for you every step of the way as you strive to reach each of your goals. In 2011, Team Up has the opportunity to cover over 17,000 miles to raise awareness and funds.
How many miles will you cover?
This “In Their Own Words” post is by Nicholas James DeTommaso. Nicholas recently earned the high distinction of Eagle Scout by creating a website to document and archive the photos,memorabilia and create oral histories of the local American Legion Post 1718 following the sale of their building. He now attends Cooper Union for the Advancement of Arts and Sciences in New York City on full scholarship. Nicholas’s hopes to develop video games and programming as social learning tools for those who find normal socialization difficult.
At two years old I stopped crying and laughing out loud; I had lost my vocabulary word by word and, I no longer laughed or cried out loud. I had autism, specifically, high-functioning Asperger Syndrome. Communication skills were nonexistent. I had to relearn all of my vocabulary. Word by word, I gained it back, but as I got older, there were social ramifications—talking to new friends was tough. I had a few quirks, sure—I was frustrated at seemingly random times. One other thing—I never said, “Thank you.”
It seemed I could develop friendships and keep them by playing video games. How could something designed for mindless entertainment help an autistic child improve communication and social skills? As James Paul Gee has stated in his 2003 book What Video Games Have to Teach Us About Learning and Literacy, “The video game environment is an environment where everyone has equal access and is treated equitably.” That even starting field was the door through which I could now enter the social world of play.
The logic of computer programming and electrical engineering is fascinating to me. The art of creating programs and to see them work through—to me there is no feeling quite like it. It is a feeling of creation, of satisfaction. By building on these known basics, I’d like to create games, learning tools through fun, which could start autistic children to not only communicate, but also grow socially, in the way I did.
My gift from others, my ability to speak and act socially, is a gift I have never forgotten. I frequently remind myself how lucky I am to have received the help I have over the years, and to that end I always endeavor to give back. In doing so, I not only feel the satisfaction of helping those less fortunate than I, but I also feel happy to repay in part the gifts given to me. Service to others has always been a tenet of my family, and my participation in volunteer groups such as the Boy Scouts, the Red Cross, and my church gives me the opportunity to do just that. I suppose, in the end, that it’s my way of saying, “thank you.”
Autism is a complex disorder. Answers will be found by taking multi-disciplinary approaches. A broad vision of autism spectrum disorder (ASD) considers how the brain develops and affects cognition, what treatments work for core symptoms, and how ASD changes over the lifespan. However, opportunities for scientists to appreciate the broad vision and diversity of approaches are unfortunately few.
This year a special 2-day conference on autism was held prior to the annual Society for Neuroscience meeting in San Diego, giving scientists an opportunity to focus on ASD and share ideas. The conference, called The Emerging Neuroscience of Autism Spectrum Disorders: Etiologic Insights; Treatment Opportunities, offered an overview of current autism research from many of the world’s leading autism researchers.
There were two strong themes in the meeting. The first was that autism research has historically studied different groups of children at specific time points. This kind of study is known as cross-sectional research. There has been comparatively little research on how children change over time, known as longitudinal research. Given that ASD is a developmental disorder which changes over the lifespan, more longitudinal research is needed. The second theme highlighted what we can learn from the incredible diversity of symptom and subtypes of ASD. Future ASD research demands a greater focus on individual differences instead of the common comparisons between averages derived from groups of individuals with ASD and typically-developed individuals.
The first session of the meeting included a review of what is known about autism risk genes. Steve Scherer, M.D. (University of Toronto) described how small variations in the number of copies of a piece of genetic code (copy number variations, CNVs) can be risk factors for ASD. These CNVs may be inherited or occur for the first time in the individual with ASD (de novo). Similar CNVs have also been identified in ADHD, schizophrenia and bipolar disorder, suggesting that there may be some common pathways underlying related developmental and psychiatric disorders. The incredible advances in genetic research, in no small part from Dr. Scherer and the Autism Genome Project, enable scientists to explore how these genetic variations affect brain development in animal models and provide clues into the underlying biology of ASD.
Declan Murphy, M.D. (Institute of Psychiatry, UK) impressed the audience with his proposal that brain imaging could be used to assist future clinicians in the diagnosis of ASD. The high costs of diagnosing individuals with ASD in Dr. Murphy’s South London community clinic motivated him to explore new methods. He used statistical methods combined with functional brain imaging to identify brain networks that may be different in adults with ASD. The use of brain scans may one day make the diagnosing ASD cheaper, quicker and potentially more accurate.
Cognition and new treatments
Day 2 of the meeting shifted focus away from biology to cognitive development and the evaluation of behavioral interventions. Tony Charman, Ph.D., (Institute of Education, London) described his study of cognitive strengths and weaknesses in a large sample of children with ASD. He argued for the importance of understanding the unique pattern of cognitive skills found in ASD to guide neuroimaging research and developing assessments of skills for early intervention programs. Dr. Charman also identified challenges in this area of research, noting that the field must address issues, such as small sample sizes and reliance on group comparisons if we are to progress.
Cathy Lord, Ph.D., (University of Michigan) showed longitudinal data collected using the Autism Diagnostic Observation Schedule (ADOS)—a tool to identify and quantify features of ASD. Her data revealed individual differences in the development of particular skills, such as eye contact, and joint attention skills, even though overall ADOS scores remain mostly constant. Language IQ remains an important predictor of children’s expected progress. Perhaps in the future, the ADOS diagnostic tool can also be used to monitor the long-term benefits of interventions.
The final two sessions focused on interventions. Fred Frankel, Ph.D. (UCLA) presented data from new interventions in friendship training. Judith Reaven, Ph.D., (University of Colorado School of Medicine) showed her data on cognitive behavioral therapy for anxiety in ASD. Aubyn Stahmer, Ph.D., (Rady Children’s Hospital, San Diego) evaluated the use of an integrated intervention model in community settings. Sally Rogers, Ph.D. (MIND Institute) concluded this session with a summary of the challenges in developing good outcome measures for intervention studies.
The last session summarized the evidence behind pharmacological treatments for ASD. One of the real challenges for behavioral pharmacologists is how to identify drug treatments for core social and communication skills. Currently only two drugs are approved for treating irritability in ASD. Several other drug treatments have been tested in clinical trials with minimal or no evidence for their effectiveness. Individual differences and variation in symptoms over time make finding treatments for the core symptoms of ASD like trying to hit a moving target.
Putting it all together
David Amaral, Ph.D. of the MIND Institute and current president of the International Society for Autism Research, summarized the meeting by focusing on autism research ‘Promises and Pitfalls’. On the positive side, he noted a dramatic rise in research, supported by increases in public and private funding, such as the major contribution by Autism Speaks. As for pitfalls, Dr. Amaral underscored the significant variability among individuals with autism that must be recognized if research results are to be meaningful. He also encouraged the continuation of brain research across the lifespan acknowledging age-related changes in brain development and behavior over time.
Progress in the field of brain research will require an on-going partnership among people with autism, families and researchers. We are both optimistic about progress and impatient to find answers. We all look forward to IMFAR 2011 in May when autism researchers return to San Diego with a broader perspective and new insights.
This Science post is by staff blogger Jane Pickett, Ph.D.
Researchers have several ways to peer into the human brain. A commonly-used tool is magnetic resonance imaging (MRI) and unlike the two-dimensional pixels in photography, voxels are used to describe the volume of brain measured by MRI. Currently, the standard voxel is a of ~1mm, about the size of coarse sea salt. Combining millions of voxels produces the 3D image of the brain you see in the figure. The view of the brain at this high resolution has led to some common ideas about the ‘autism’ brain.
Cynthia Schumann, Ph.D. and Christine Nordahl, Ph.D. of the MIND Institute at UC Davis, show how imaging, when paired with the microscopic inspection of the post mortem human brain, can help answer questions about typical and disordered brain development. MRI studies of autism have revealed an atypical trajectory of brain growth during early childhood, characterized by brain overgrowth, that is present especially in the frontal cortex (involved in higher mental functions) and also in specific structures such as the amygdala (involved in memory functions, particularly of emotional experiences).
Why are these areas growing larger than normal in young children? One way to answer this question is to look at the cells in these enlarged areas. That solution requires samples of donated postmortem brain tissue.
To give an idea of what’s in a voxel in a typical 3 year old child’s brain: there are an estimated 40,000 neurons in the space of a voxel in the cortex and 7000 in each voxel in the amygdala. The pictures in row C show just a portion of cells in a single voxel in the brain areas indicated. Some evidence indicates that neurons and another cell type called glia are more abundant in the brains of individuals with autism. Connections between cells need space and the more numerous brain cell branching that has been found can also lead to a size increase of a given area.
In addition to counting cells and their connections, fine-scale anatomy allows us to examine the layered organization of cells in the cerebral cortex and other local relationships in different brain areas. When researchers observe cells that are “out of place”, this suggests differences in the functioning of that local network of cells.
Researchers can also use antibodies to localize various molecules in post-mortem brain tissue. With these techniques scientists can identify cells that carry a particular type of neurotransmitter, or other cellular signals. One can also extract and analyze the building blocks for proteins in RNA and DNA and look for regions where a certain gene may have been “turned on” or off more than expected.
Given the coarse resolution of MRI, the field must look towards post-mortem human brain research to help us understand the neurobiological underpinnings of the difference in brain growth patterns that have been found in MRI studies. MRI studies are very helpful in targeting which brain regions should be explored further in post-mortem studies.
Autism Speaks’ Autism Tissue Program supports specialized neuropathology research by providing approved scientists access to the most rare and necessary of resources, post mortem human brain tissue. We wish to recognize the commitment and generosity by our ATP donor families. More information can be found at www.autismtissueprogram.org or call 877-333-0999 for information or to initiate a brain donation.
Brain Research will be publishing a special issue of articles that feature presentations at the 2010 Brain Research meeting. Dr. Schumann’s paper is currently available online with appropriate institutional access or for purchase.
Schumann, CM and CW Nordahl. Bridging the gap between MRI and postmortem research in autism. Brain Res. (2010), doi:10.1016/j.brainres.2010.09.061.
Edison State College unveils courses to expand autism awareness (Naples News)
Sandra Worth’s son was 3 years old when she and her husband first started to realize something wasn’t quite right. But it took roughly 12 more years of the boy’s life to be diagnosed with autism. Read more.
A different kind of caring (Australia)
Seven-year-old Marc Duggan eagerly awaits his trips to Baptcare each fortnight. It’s his chance to get out and have some fun. Whether he is out bowling or listening to guest speakers, it’s often the only time he gets to act like a normal kid. Read more.
Mac student learns to thrive despite form of autism (My Journal Courier)
Taylor Sweeting has used what some would call an impediment and to become an effective leader. Read more.
Out to play: Parents learn to bridge gap between themselves, child’s autism (Central Michigan Life)
Five-year-old Micah Nickel was diagnosed with autism in the spring of 2009. Immediately, Chris and Jenn Nickel set out to find how to best help their son. The family found the Massachusetts-based Son-Rise program,an organization that looked like the perfect place for Micah. Read more.
Pet dogs can transform lives of the disabled ( UK)
Pet dogs can transform the lives of the disabled, including autistic children, researchers say. There is a growing awareness that dogs can play a key role in ending tantrums in children, reports the Telegraph. Read more.