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Archive for December, 2011

Autism in the News – 12.26.11

December 26, 2011 1 comment

Navigating Love and Autism (The New York Times)
The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness. Read more.

Philadelphia Practice Flight Helps Autistic Kids Fly (NPR)
Air travel horror stories typically involve lost luggage, missed connections and overzealous security staff. But families affected by autism face other challenges in navigating airports and planes. Read more.

Fundraising with autism support (Australia)
With his star rising in the music world, Doug Edwards was forced to make a decision: trade in his guitar to better support his autistic daughter, or hang onto it. Read more.

Autistic third-grader put into a duffel bag by school officials, mom says (The New York Daily News)
The Kentucky mother of an autistic third-grader said she found him outside his classroom stuffed in a duffel bag with the drawstring pulled tight — because he misbehaved. Read more.

Autism hope (Canada)
My son, who was diagnosed with autism nine months ago, is being medically treated for an immune-mediated encephalopathy, instead of autism. His recovery, from what is supposed to be a permanent disorder, is nothing short of remarkable. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News

Weekly Whirl – Our Favorite Holiday Blogs!

December 23, 2011 2 comments

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 are bringing you our favorite holiday blogs from across the web! We would like to wish you a wonderful holiday and a happy and healthy new year! 

Autism Christmas: Different but not less*
“Around the world families will be awoken by small children in the wee hours of the morning begging to see what Santa has left them in their stockings and under the tree. Later they will welcome guests or perhaps travel to see extended family for a special Christmas meal with all the fixings.” -Adventures in Extreme Parenthood

Nate’s Hanukkah list
“Nate isn’t one for surprises. He likes what he likes and that’s that. So when it comes time for his birthday, or Hanukkah, he types up a list of what he wants and we order it. The package gets delivered, he files his new stuff away with little to no fanfare and it’s over almost before it begins.” - Jeff Katz from Autism Support Network

About the Tree
But the past couple years she has decided to ignore the Christmas tree completely. Like… Meh. I am not going to pay any attention to these crazy people putting a treein a  house. Rearranging my living room and oohhing and ahhing and carrying on and putting stuff under it that nobody can play with and stuff on it that’s not even fruit. If I can’t climb it, jump on it, hide under it, spin it, or eat it, it’s of no use to me. Tree, shmree. Whatever people.” -Rhema’s Hope

Christmas 2010
“I’m remembering a day that worked. A day in which every member of the family participated in the celebration of the holiday in his or her own way. A day upon which compromises were struck and expectations were sent out to sea. A day in which any unnecessary demands were dispatched. A day when small prizes were treasured and time was valued above all else. A day that never would have been possible just a few short years ago.”
-Diary of a Mom 

I HAVE A LITTLE DREIDEL (FOR AN SPD HANUKKAH)
“Any holiday can disrupt a family’s routine. One that is eight nights long can really change things up. My son, with all of his sensory issues, can’t sit through an organized Temple Tots celebration or anything like that. So for a successful holiday, we’ll be doing all our celebrating at home, just like I did when I was a kid. And this year, we’ll be making our Hanukkah sensory friendly.” – Alysia from The SPD Blogger Network

Christmas Magic
“Life as a special needs child is tough.  When she role-plays, I’m at once elated that she is developing her pretend play skills, and dismayed that her doll is “going to therapy” day after day. Childhood should be about wonder and magic, not mundane, routine therapy. So at this time of year, I find it even more important to put the wonder back into her life.” – Spectrummy Mummy from Hopeful Parents

A Season of Difference
“Schuyler understands how tribes are formed, I think, at least on some visceral level.  And rather than feeling overwhelmed at how we are spiritually out-of-sync with most of those around us, she is encouraged by our little pod of difference.  In her own way, Schuyler understands the concept of family better than most.” -Robert Hummul-Hudson from Support for Special Needs

Early Hanukkah
“Jacob actually yelled “Happy Hanukkah!” to everyone this year instead of “Merry Christmas!” which he used to be wont to do, as there is so much more of that in the world around him to catch his echolalic attention.”  - The Squashed Bologna

Autism’s Season of Hope
“It dawned on me that this could only mean one thing:  perhaps the experts had it wrong.  Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around him. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”
Susan Senator with a forward from Lisa Belkin

Wonderful Christmas Time
“Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.”  - Try Defying Gravity

The Spectrumville Christmas Letter
“It’s that time of year again to share with you our adventures in this journey we call life. 2011 has been another year of magic and wonder…” – Erica from Laughing Through Tears 

Autism in the News – 12.22.11

December 22, 2011 Leave a comment

Autism-friendly Santas a hit at malls (Australia)
Visiting a shopping mall to share Christmas wishes with Santa had always been too much for 10-year-old Ben Borre, due to the autism that makes the noise, lights and crowds an unbearable torment. Read more.

Tablet helps autistic learn, communicate (India)
When New York-based Akshay (name changed) came down to visit his grandparents in Mumbai, his iPad was one of the most important possessions in the luggage. Diagnosed with autism since he was 18 months of age, the 10-year-old who speaks only a few words managed to communicate with his grandparents and visitors with the magic tablet. Read more.

Acting with autism (Fresno, Calif.)
One in every 110 children is diagnosed with some level of autism. For many parents, this usually means problems with communication and little interest in interacting with others. But now a new program is changing how we look at autism by putting kids in the spotlight. Read more.

Review: ‘Extremely Loud and Incredibly Close’ mines 9/11 and autism for emotional weight (HitFix.com)
I wish I were more resistant to Stephen Daldry’s movies. He’s given to the sort of grand gestures that can drive me nuts in some filmmakers who don’t earn those moments, who work at the depth of a car commercial, but put to service of some fairly well-groomed material. Read more.

Newark woman swims frigid Elk River for autism awareness (Newark, N.J.)
With a dusting of snow covering the ground and an air temperature just below the freezing mark, a Newark woman plunged into the frigid Elk River Sunday morning on a mission to raise awareness of autism and become certified as an ice swimmer. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

Autism in the News – 12.20.11

December 21, 2011 Leave a comment

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. 

 

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Can Topotecan Relieve Angelman Syndrome?

December 21, 2011 6 comments

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 in the News – 12.21.11

December 21, 2011 Leave a comment

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.

Categories: Autism in the News Tags: ,

Donating in honor of a friend

December 21, 2011 8 comments

Owen

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.

Cody

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