Greenwich families struggle to cope with autism (Greenwich, Calif.)
Nestled in the pews of a Greenwich church for the First Communion ceremony of her 9-year-old son last summer, Brenda Landsman gazed with bittersweet longing at the line of little girls, twirling in white dresses as flowers dangled from their hair. Read more.
Autism can make Christmas stressful (UK)
A Plymouth man is on a mission to raise awareness of challenges people affected by autism face at Christmas. Marco Gianetti, who has Asperger syndrome, has described how the festive season can be difficult for people living with autism. Read more.
Group gives iPad2s to autistic students (Rocky Mount Telegram)
While Apple users across the world are utilizing the iPad2 to share pictures and as a portable social media instrument, members of Nash Autism Seeking Hope are distributing the devices to even the educational playing field for children diagnosed with autism. Read more.
A mainstream or a specialist school? – The autism education debate continues (Mancunian Matters)
Parents want the best for their children and deciding on where they should be educated is a major decision for them to make. This could be a challenge for any parent but when their child is autistic this becomes a much more complex problem. Read more.
Blue Cross change concerns patient advocates for autistic children (Twin Cities)
Blue Cross and Blue Shield of Minnesota will begin dropping coverage in most cases for a costly therapy for autistic children as early as Jan. 1 – a change that has patient advocates worried about losing coverage through a key state program, too. Read more.
Posted by Eileen Braun, executive director of the Angelman Syndrome Foundation, and Joe Horrigan, M.D., Autism Speaks assistant vice president and head of medical research
Today brings the publication of findings on a group of compounds whose potential for treating Angelman syndrome deserves both kudos and cautious optimism. This rare condition, often classified as an autism spectrum disorder (ASD), is marked by developmental delays, lack of language, seizures and difficulties with balance and walking. Many individuals with Angelman syndrome require lifelong care.
In research initially funded by the Angelman Syndrome Foundation, neurobiologist Ben Philpot and his team at the University of North Carolina, Chapel Hill, screened over 2,300 compounds to find several that, in mice, activate production of a brain protein whose absence causes Angelman syndrome in humans. The tremendous public interest in this report stems from the fact that one of the compounds identified in the paper is available as an FDA-approved chemotherapy drug (topotecan, or Hycamtin) for small cell lung cancer that fails to respond adequately to first-line treatments. [See our related news report, “Topoisomerase Inhibitors and Angelman Syndrome.”]
While we are heartened by the UNC team’s identification of potential medicines for the treatment of Angelman syndrome, we are deeply concerned that this news could produce expectations that lead some families to prematurely seek this drug for their loved ones–that is, before it is safe to do so. As a community, we should welcome the news, but we cannot let it risk unintended harm by side stepping the proper due course of research. The next phase of research is critical to assessing safety and effectiveness.
Our concerns are several-fold: First, the findings from this study represent a very early stage of the drug discovery process. As the UNC scientists are quick to point out, they have yet to determine whether these compounds actually relieve symptoms in animal models of Angelman syndrome—let alone whether they can benefit children or adults affected by this disorder. Along the same lines, it is unclear if medicines like topotecan affect human cells in the same way that they affect the cells of mice. In addition, these agents can have serious side effects. For example, we must remember that chemotherapy drugs such as topotecan are designed to kill cells—primarily cancerous ones, of course. But they also affect healthy cells. Potential side effects of topotecan include bone marrow suppression, which is associated with a sometimes dramatic decrease in the production of blood cells. In addition, topotecan can cause fetal harm when administered to a pregnant woman.
On a practical level, determining an effective but safe dose of a medicine like topotecan can be difficult for even a cancer specialist. Also, a medicine like topotecan was not designed for use over extended periods of time, but rather as one of the last resorts for patients with a deadly form of cancer that does not respond adequately to other treatments. All of these factors need to be considered carefully by the readers of this important paper by Dr. Philpot and his colleagues.
We feel it is especially important to view this study’s promising findings in the light of other experimental medicines now entering the autism research pipeline. We look forward to these potential medical treatments being carefully studied for safety and effectiveness first in animal models and human tissue samples. Only then should the safest and best candidates be considered for advancement into clinical trials.
The critical point is that there are no short cuts to drug development when it comes to safety.
This raises a second, very important issue for our families. As promising as any experimental medicine may be, one needs to carefully consider what it means for you or your child to be part of a clinical drug trial. The potential benefits and risks associated with being a research participant can be quite different from those experienced as a person receiving medical care from a personal physician or other healthcare professional. As a result, the decision to become a research participant should be approached with careful thought and discussion.
For these reasons, we’re working together to create a “Participant’s Guide to Autism Drug Research.” Please look for its release on this science blog and on the “Participate in Research” page of Autism Speaks website in the coming weeks. You can also stay up-to-date with this research as it relates to Angelman syndrome via the Angelman Syndrome Foundation’s website at www.angelman.org.
Have more questions? Send them to GotQuestions@autismspeaks.org and bring them to “The Doctors Are In,” our monthly live webchat with clinical psychologist and Autism Speaks Chief Science Officer Geri Dawson, PhD, and her co-host, pediatric psychiatrist and Autism Speaks Head of Medical Research Joe Horrigan, MD.
Autism-friendly Santas A Hit At Malls, Parties (Hartford, Conn.)
Visiting the mall to share Christmas wishes with Santa has never been part of Ben Borre’s childhood, a sad but necessary concession to the autism that would make the noise, lights and crowds an unbearable torment for the 10-year-old. Read more.
Editorial: People with autism can now access special services at Eden’s new headquarters in Central Jersey (NewJersey.com)
This month, Eden Autism Services officially opened the doors to its national headquarters and school in Plainsboro. Read more.
Autism Rates Have Spiked, But Why? (NPR)
According to the Centers for Disease Control, nearly one percent of U.S. children have some form of autism, 20 times higher than the rate in the 1980s. Alan Zarembo of The Los Angeles Times and clinical psychologist Catherine Lord discuss what’s behind the growing number of diagnoses. Read more.
Does your child show signs of autism? (ArabNews.com)
The Child Early Intervention Medical Center in Dubai organized a three-day “Autism Around The World Conference,” from Dec. 8 to 10, to educate and instruct parents and teachers on how to deal with autistic children. As for parents, there were a number of lectures and workshops focusing on diet for autistic children, how to make your house a safe zone for your autistic child, and most importantly, how to detect early signs of the disorder. Read more.
Learning to fly: Program offers practice opportunity for kids with autism 9 (News Works)
Air travel horror stories typically involve lost luggage, missed connections and overzealous security. But families affected by autism face other challenges in navigating airports and planes. Read more.
This blog post is by Owen, with the help of his mom for the big words.
This past July, I started taking hockey lessons from a new coach at our hockey rink. One of the students he had skating with me was seven year old Cody Smith. Sometimes I did not understand why he would play good on some days and then have a bad day at practice (crying, leaving the ice, not listening to coach). His parents told my mom that Cody was a “special” person. He had something called Aspergers. (To a five year old it was just another big word.) We became friends and started to do fun things together. To me he was not any different from me or any of my other friends, he had good moods and bad moods too just like we did. He played with the same kind of toys, went to normal school, and even played hockey like I did.
In October, we started planning my 6th birthday party. And even though I was excited that presents were going to be coming, I knew that there was something else better. I have all the toys I want, so I wanted to help Cody and kids that were like him. I told my mom and dad that I wanted to help raise money for Cody. I asked my friends who were invited to bring money to help Autism Speaks to the birthday party instead of presents.
A few weeks ago, I had my birthday party. Everyone had fun bouncing around, eating pizza, having cake and ice cream. Many of my first grade classmates and my hockey team attended. They brought presents for me (even though they did not have to) and also money to donate to Autism Speaks. When mom and dad finished counting all of the money, I had raised seven hundred dollars. My parents tell me they are proud of me for helping out someone else. Cody’s mom and dad told me that I was special for helping out a good cause. I just know that I was helping my friend.
Every year, Autism Speaks documents progress toward its mission to discover the causes and best treatments for autism spectrum disorders (ASD) and identifies the most important autism research achievements of the year. Our “Top Ten” list for 2011 includes discoveries on how frequently autism recurs in families and the extent to which “environmental,” or non-genetic influences, increase the risk of autism. All of the research described in this list will profoundly shape the future of autism research in 2012 and beyond. Some of these remarkable findings are already delivering real-world benefits to individuals and families struggling with autism.
“Not only has the research community continued to make significant progress towards effective treatments, 2011 offered some game-changing discoveries that help us understand underlying causes of ASD,” says our Chief Science Officer Geraldine Dawson, Ph.D. “Some of these discoveries will have direct and immediate impact on quality of life of people with autism.”
Our Top Ten list comes about through the recommendations of our science leadership and the members of our scientific advisory committee. It reflects the exponential rate of discovery we’re now seeing in autism research—progress made possible by the joint commitment of government health agencies and private organizations such as Autism Speaks. In other words, made possible by YOU—our families, donors and supporters. We thank you for your commitment to research, both in terms of your financial donations and your participation in research.
To read about the major autism research discoveries of the past year, please see our Top Ten Autism Research Advancements of 2011.
Table of Contents
(Order does not imply relative importance.)
More than Just Genes…
Population Screening Reveals Dramatically Higher Autism Rates…
Baby Siblings at Risk…
De Novo Genetic Changes Provide New Clues for Autism…
Different Forms of Autism Share Striking Brain Similarities…
Prenatal Vitamins Before and After Conception May Decrease Autism Risk…
Gene Knockout Mouse May Offer Leap Forward in Autism Animal Models…
Tweaking Electrical Activity in the Brain Impairs & Restores Mouse Social Behaviors…
More Evidence Linking Immune System to Some Forms of Autism…
Earlier Autism Screening Shows Promise…
This by is Ann Gibbons, Executive Director, National Capital
Sometimes I get discouraged. The slow progress of research and discovery; the painstaking process my son goes through when learning a new skill; the number of times we parents have to reach out to each other to steady one another on an often rocky road. But a couple things happened recently that made me sit up and cheer at my desk.
I read a note from my boss, Mark Roithmayr, who celebrated the opening of a national autism diagnostic and treatment center to serve families across Albania. It will also support regional development through the Autism Speaks’ Global Autism Public Health Initiative.
“We are one organization among many,” Mark wrote. “We are largely supported by families – those who walk and fundraise, one dollar at a time, to change the world. It’s working.”
Now spin the globe half a world away and land in Pasadena, Maryland. Here we met the seventh grade students at the Chesapeake Bay Middle School and their teacher, Yvonne Embrey. Pasadena is a small town—12,000 residents—in Anne Arundel County, Maryland, on the Chesapeake Bay. It is not a wealthy town by American standards, but it is an incredible place. Yvonne wrote us last April: ”My 7th grade students at Chesapeake Bay Middle School are doing a fundraiser for autism as a service learning activity. In class, the students learned basic information about autism and two students spoke to the whole group of 120 students about their autistic brothers. The students gathered pledges and completed a walkathon on April 27 at Chesapeake High School.” This was just the beginning of a yearlong dedication to learning about autism and working for our mission. By year end, the students have raised over $16,000 for Autism Speaks.
The folks in Pasadena, Maryland did not have to support our cause…but they did. And their acts of kindness are felt here, at home, in the families struggling in their homes in their own school district; and in the homes on the other side of the globe. It is time to listen, as our motto reads; and we are listening, together.
Autism battle: At last, west to have P-12 school (Australia)
An autism school catering for children up to year12 in Melbourne’s west has been approved by the state government. Read more.
Autistic girl’s service dog found dead in family’s front yard (Berkeley County, S.C.)
A service dog that stolen from the home of a young Berkeley County girl with autism last week was found dead in the girl’s front yard Sunday night. Read more.
Holiday gift guide: Books about autism (Silver Spring, Md.)
Whether you are looking for a last-minute gift idea for a relative or trying to find a book to lose yourself in over the winter holidays, look no further. Autism Unexpected brings you some of our favorite books about autism, just in time to buy and read over the holidays. Read more.
NJ autistic adults lack programs (NorthJersey.com)
Delia O’Mahony moved back to New Jersey a decade ago seeking better educational opportunities for her autistic son, Jonathan. Read more.
Unsettling season: Noisy, bright, busy holidays are challenge for families of children with autism (Deseret News)
Here’s an unforgettable Christmas scene from the past: a younger Brady Cook, agitated because his current obsession, a battery-powered toy drill that was under the tree, is not working. In the meltdown that ensues, he puts his head through the sheetrock wall. Meanwhile, as Robert and Sharon Cook try to calm their son, his brothers, Nick, Christopher and Coby, open their own gifts by themselves and play with them quietly. Read more.
Max Braverman is an autistic character in the show. The creator, Jason Katims, has a son with Asperger’s/autism. Alex talks with the cast about autism, acting, and NBC’s hit show Parenthood!
5-year-old with autism needs special sensory items (Cincinnati.com)
Ronald Adams does not have the latest video games on the top of his Christmas list this year. Read more.
Catalyzing Autism Research At MIT – $26.5 Million Simons Gift (Medical News Today)
The Simons Foundation has given the Massachusetts Institute of Technology (MIT) a $26.5 million gift. The money will be used to develop the Simons Center for the Social Brain at MIT, a novel plan that aims to catalyze newfangled research on the social brain and translate the research into enhanced diagnosis and treatment of autism spectrum disorders (ASD). Read more.
Dog brings relief to autistic Antioch teen and family (MercuryNews.com)
Abbi Roman settles into the living room recliner and pets the black dog sprawled across her lap into a blissful repose. Read more.
Popular autism therapy mixes warm praise, firm guidance (Los Angeles Times)
In some ways, applied behavior analysis resembles ordinary parent-child interactions — except every aspect has a purpose. ABA treatment for autism varies greatly from case to case, as does its success. Read more.
Bad Santa at Logan Hyperdome taunts family of autistic, Aspergers children (Australia)
Meeting Santa Claus for the first time was meant to be a jolly experience for Cameron Sleeth, 6. But the excitement of meeting St Nicholas turned into a nightmare his mother wishes she could forget. Read more.
If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.
This week we would like to bring you our favorite videos from the web! Enjoy, enjoy!
Surprise from Daddy!
Dad surprising his son at school after returning from Iraq
Touching Video! Autistic Man Gets Help Singing The National Anthem
There is still great hope in humanity, and this video shows that when the entire crowd at Fenway Park comes to the aid of an autistic man singing the National Anthem.
Inside Out: My Life With Asperger Syndrome
I struggled with undiagnosed autism for nearly 25 years. My diagnosis has enabled me to embrace my individuality and move forward.
James Hobley – Britains got talent semi final dancer
Britains got talent 2011 James Hobley Dancer performs in the semi final. The semi final shows is live to the TV Audiences. Britain looks for it’s new variety act to perform in front of the royal family at the royal variety performance. Being judged by David Hasselhoff (The Hoff), Amanda Holden and Michael Mcintyre and mow returning Simon cowell.