Archive
Autism in the News – 09.29.11
Congress extends autism research programs (Bloomberg Business Week)
Congress is sending President Barack Obama a bill to keep the government’s autism research program going. Though the legislation had broad support, it almost didn’t make it out of the Senate. Read more.
Paul Scholes reveals son’s autism battle (UK)
Former England and Manchester United player Paul Scholes has revealed that his youngest son is autistic. In an serialisation of his autobiography Scholes: My Story, the retired midfielder speaks about his experience of having a son who suffers from the developmental disorder. Read more.
Musical Savant, Derek Paravacini, Stuns Audiences (ABC News)
When Derek Paravacini, 32, played his concerto in London’s Queen Elizabeth Hall Wednesday night, he knew the piece by heart — and all the parts for each instrument in the orchestra, about 45 in all. Read more.
Autistic local artist aims to show work at NYC exhibit (New York, N.Y.)
A local artist is trying to get to New York City to show his work, but he needs some help. Anthony Rivera, 40, has autism and is a talented artist who would like to participate in “ARS SPECTRA: The Autistic/Artistic Mind” later this year at the Soho Digital Art Gallery in New York City. The event, featuring numerous artists with autism, will begin Oct. 27 and last for three weeks. Read more.
Gap to Host Fundraiser This Weekend (Bridge Water Patch)
Gap stores in the area are coming together this weekend for “Help Close the Gap on Autism” in an effort to collect donations to help the worthy cause, according to a release from the store. Read more.
CARA: It Took a Community
This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.
I couldn’t be happier to share once again the news that we all had been waiting for…the Combating Autism Reauthorization Act is on its way to President Obama. Late Monday night, the U.S. Senate passed HR2005, the same bill that passed the House of Representatives last week.
For those who followed the chain of events during the past week, the band of four Senators who had placed a “hold” on the bill agreed to allow CARA to pass the Senate under the Unanimous Consent procedure. Their only condition was a request to the U.S. Government Accountability Office (GAO) to undertake an investigation on the federal funding of autism research, a request Autism Speaks has long supported to ensure our scarce federal research funds are spent wisely.
So now we have a law…well technically it becomes a law once President Obama signs it later this week! $693 million in authorizations for autism research for the next three years.
Our success in the Senate this week and the House of Representatives last week was the result of a rare show of bipartisan leadership in today’s Congress. In the Senate, we thank our two original sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), along with the chairman of the Health, Education, Labor and Pensions Committee chairman, Sen. Tom Harkin (D-IA). Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) also earn our thanks by enabling our bill to move through a crowded agenda and on to the Senate floor for a final vote. In the House of Representatives, a team effort between Reps. Chris Smith (R-NJ), the prime sponsor of HR.2005, and Mike Doyle (D-PA) was assisted by House Majority Leader Eric Cantor (R-VA) who expedited consideration of the bill.
But this team effort extended well beyond the Beltway. The tens of thousands of Autism Speaks grassroots supporters and advocates across the United States who we called upon time and time again to make their voices heard played a central role in this success. A special thanks goes out to the entire Autism Speaks Field team for its incredible responsiveness and for rallying the troops from Maine to Florida, Texas to Minnesota and from Washington to the Tijuana border. Our grassroots efforts have never been better! And our thanks must also go to our partner organizations in this effort, the Autism Society of America, the Association of University Centers on Disabilities, the Consortium for Citizens with Disabilities, Easter Seals, the American Academy of Pediatrics, and the National Association of Councils on Developmental Disabilities.
The final enactment of CARA will be of enormous benefit to the autism research community that is making advancements on an almost daily basis. Because of CARA, the research enterprise will be able to continue to grow, without interruption, to find the answers our community so desperately needs and deserves.
On behalf of the 3 million Americans who wake up every day with the challenges of autism, the professionals who work daily to care for them, the scientists who are dedicating their careers to finding the answers and all of those who are committing their lives to improve the futures for those living with autism, thank you! Today is a better day because of what WE ACCOMPLISHED TOGETHER.
A Parent’s Worry Explored in NBC’s ‘Parenthood’
Here is the ‘Experts Speak‘ commentary of NBC‘s ‘Parenthood‘ episode ‘Step Right Up.’
The Bravermans are having a baby! How exciting! From the look on Adam’s face in the final episode last spring, it was a real shock to both Adam and Kristina at first. Now they, as well as the whole Braverman family, are delirious with joy that Kristina will be having a baby – and soon! But underneath, there is tension and, like many families in similar situations, real fear as well.
Kristina and Adam know the statistics for having a second child with an autism spectrum disorder. The latest research study (Ozonoff, Young, et al., 2011) released just this August in the journal Pediatrics reveals that the chance of having a second child with an autism spectrum disorder is 19% (previous rates were stated between 3% – 10%). Since four out of five individuals with autism will be boys, is it any wonder that Adam and Kristina are hoping for a girl?
Learning that they are having a baby girl lessens the tension but probably will not totally eliminate it. The research in heritability of autism in families is difficult to ignore, and Kristina and Adam face what other families face when they already have a child with autism spectrum disorder. Some families that have a diagnosed child with ASD will choose not to have a second child at all – in research, that’s called the “stop factor.” To put it plainly, they stop having children.
And that is sad. Because each child – whether they have autism or not, and whether they are the first, second, third or more child with an ASD – should be a joy to behold. For families that have a child with autism, the family gets an extra package – a child that has a very unique way of looking at and reacting to the world. Individuals with ASD offer so much to our world – to parents and professionals alike. Too often, the world only sees the “downside” to autism: the lack of verbal language, the inappropriate behaviors, the social isolation. Professionals (like myself) hold days-long workshops on ASD, outlining the characteristics, teaching strategies and methods to reshape inappropriate behaviors, and how to ameliorate the symptoms of autism. But shouldn’t we be holding days-long workshops on what those with autism bring to our society? The joy of seeing progress, the huge rote memory, the insatiable curiosity, and the pure innocence that catches us unaware and makes us all humble?
Yes, it is a present fear that a family will have a second or third or fourth child with autism (and there are some families in this nation that have more than four children with ASD), and pediatricians and family physicians should be referring the family for genetic testing and counseling, so that the parents can make informed decisions for themselves and for their family. Although there is no definitive genetic marker for autism at this time, current studies are getting closer to capturing its elusive causes. Someday, there will be answers. Families who have a child with ASD (regardless of how many) should be referred for genetic testing, since other, underlying conditions can be identified (which may explain behavior and medical difficulties mimicking autistic behaviors) such as Fragile X, metabolic disorders, Rett’s Disorder, etc. In fact, genetic testing is a procedure that families may want to repeat every 10 years or so, since breakthroughs can happen (and are happening) at any time and in any number of disabilities and conditions.
Should Adam and Kristina be fearful? Not really; the baby is coming regardless of whether she has autism or not. A bit worried? Yes, probably, and totally understandably. But this is a strong family, and the love of their children is deep; they will love this little girl whether she has an autism spectrum disorder or not.
And she couldn’t be born into a better family.
Written by Sheila Wagner, M.Ed.
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The High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
You can find more information about these findings here:
New findings on risk of autism in siblings – What do they mean for parents?
‘Medical Home’ Important for Autism Treatment and Family Support
Having one comprehensive “medical home” is crucial for families of children with special medical needs. That’s the conclusion of a new report in the journal Pediatrics. It’s also the philosophy at the heart of Autism Speaks Autism Treatment Network, says ATN medical director Dan Coury, MD. Read more on our science news page …
A Surplus of Males
This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian.
I spent this Tuesday in Washington, reviewing autism research proposals. I really enjoy that work, because it puts me among some of the best minds in autism science. In the course of our discussions, an intriguing question arose.
We know autism is far more common in males, but the reason why remains elusive. It’s one of those facts of autism that most people take for granted, and simply accept for what it is. In earlier essays on this blog I have considered possible explanations, from Simon Baron Cohen’s theory that autism is “exaggerated maleness” to reasons why females might be undiagnosed and undetected.
All the explanations I have heard so far do not account for this interesting observation:
If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50. It favors the males. Any autism researcher who has worked with families knows that to be true, even in the absence of hard studies to quantify it. Why?
All of us know families that have all sons or all daughters. We don’t make anything more of that that we do tossing a coin and having it come up heads three times in a row. Just chance, we say. But when you identify a group of families with a trait like autism, and they all have more sons than daughters . . . suddenly it stops looking random and starts to seem the result of something else.
One explanation is that some parents have a son with autism and stop having children. So the girls that might even the male/female ratio are never born. I think that explanation may be true today, but what about the ages before modern birth control?
Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true. The autism diagnosis has only existed for sixty-some years. Yet we do have strong anecdotal evidence. Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives. How many of those individuals are female? Almost none.
Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong. That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side.
Geri Dawson suggested another possible explanation for the male-female imbalance. What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way? The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female. The result – fewer baby girls with autism are born.
To the best of my knowledge, no one has studied pregnancies in families with autism. All that has been studied are the resultant children. We don’t know how many miscarriages may have preceded or followed the birth of an autistic boy. The incidence of miscarriage in general has been studied and it would be interesting to know if families with autism deviate from the norms in that regard.
The son-daughter imbalance certainly ties in with the Baron-Cohen “maleness” theory. If autism indeed an expression of excessively male genetic material, that imbalance might result in more males being born in those families.
I spoke to several scientists and it became clear that this is one of those obvious questions that has never really been answered. There is the general belief that autism families contain more males, but we have no hard data to illustrate the difference. We also don’t have any multi generational data, which could shed light on the heritability of the condition.
In my own family, I have one child, a son with Asperger’s. My father had many Aspergian traits, but he died before anyone thought to explore that possibility. He had a brother, and no sisters. His father also had a brother and no sisters. His grandfather had three brothers and a sister. Is there a pattern there that relates to autism? I really don’t know.
It would be very interesting to see a study that addressed this question. Perhaps a grad student somewhere will read this, and bring a research proposal to our next review meeting . . . .
Autism in the News – 09.28.11
Congress overcomes last-minute objections to autism research programs (The Washington Post)
Congress is sending President Barack Obama a bill to keep the government’s autism research program going. Though the legislation had broad support, it almost didn’t make it out of the Senate. Read more.
State board overturns autism therapy rule change (Charleston, W.Va.)
The state Board of Examiners of Psychologists voted to withdraw a controversial legislative rule change from earlier this year, citing a “misunderstanding.” Read more.
Autism hasn’t stopped Temple Grandin’s impressive career (Democrat and Chronicle)
Temple Grandin is an associate professor at Colorado State University, where she is an expert in animal behavior. She has designed one-third of all livestock-handling facilities in the United States. Read more.
School uses vinegar to discipline children (The Imperfect Parent)
Children at a Texas Elementary School allegedly had cotton balls soaked in vinegar put into their mouths and were forced to go on a treadmill longer and faster than they wanted to as a form of discipline. The children being disciplined suffer from autism. Read more.
Missing 7-year-old with autism could be released from the hospital Wednesday (WHAS11.com)
A 7-year-old boy who went missing for nearly two days, could be released from Kosair Childrens Hospital in Louisville Wednesday. Read more.
2nd Annual Autism Speaks Fall Classic
On Monday, September 26, 2011, Autism Speaks celebrated its 2nd Annual Autism Speaks Fall Classic at the illustrious Baltusrol Golf Club in Springfield, NJ. Joined by Title Sponsor ShopRite and Tournament Sponsor GTS-Welco, we hosted an exciting afternoon golf tournament and evening reception that raised over $268,000 for Autism Speaks’ research and advocacy initiatives! The tournament kicked off with a shotgun start on Baltusrol’s famed lower course and featured several contests, including the US Bancorp Million-Dollar Shootout, prizes distributed for the longest drive and the Bachman Putting Contest where qualifiers could compete to win a $10,000 prize.
The day wrapped up with evening cocktails, and a silent and live auction which offered guests an opportunity to help fund Autism Speaks’ initiatives for adults with autism. Honorary Co-chair and Autism Speaks Co-founder Bob Wright showed a highlight video from the second annual “Light It Up Blue” initiative on World Autism Awareness Day, on April 2. He also honored longtime Autism Speaks supporter Joe Kernan, host of the CNBC’s popular morning show “Squawk Box.” Event Co-chair and President of the Bachman Company Scott Carpenter welcomed another honoree, fourth grader Zachary Brooks, a tireless advocate for Autism Speaks whose twin brother, Jack, is affected by autism. Carpenter also introduced a special “thank you” video message on behalf of his fellow Co-chairs: his wife Suzie, John and Nico Sumas of ShopRite, Peter and Heather Kapsimalis, and Anne and Dave St. Clair. The video summed up why it’s so important to help raise awareness and funds for Autism Speaks, and expressed gratitude to everyone involved in making the Fall Classic such a special day.
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LIVE Chat with Dr. Ricki Robinson Transcript
On Monday September 26 Dr. Ricki Robinson, author of Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.
Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.
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Autism in the News – 09.27.11
Autism Memoir Author Monica Holloway to Appear on Autism America Radio 9/17 In Observance of National Dog Week — Holloway Shares Hope and Healing Through Connection With Dog ‘Cowboy’ (Stock Market Review)
Acclaimed author Monica Holloway will join Autism America Radio as a special guest, sharing her journey with autism and discussing her book “Cowboy and Wills” on Saturday, September 17 from 3-5 p.m. PT on KTLK 1150 AM. Read more.
A Perfect Score Means a Good Week (Northbrook Patch)
As the parent of child with autism, one of the things that I always struggle to keep in mind during the tough times is that things always change. Read more.
Revision would eliminate Asperger’s as a diagnosis and replace it with autism spectrum disorder (Syracuse.com)
Asperger’s syndrome, a form of autism being diagnosed in a growing number of children, may soon disappear from the official psychiatric diagnostic manual. Read more.
Forsyth County’s “A Boy and His Dog” (Cumming Patch)
Josh and Laraleigh Forester have a snake, a fish and four amazing children under the age of six. As you can imagine there is never a dull moment in the Forester home. Although they have a full house they are looking to add one more to their brood. A dog. Not just any dog, an autism service dog. Read more.
Pioneer Center CEO to Retire (Crystal Lake Patch)
Lorraine Kopczynski, president and CEO of Pioneer Center for Human Services, told the center’s board about her plans to retire in the spring of 2012. Read more.
Our New Medication Decision Aid in Action …
Posted by pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.
As a nurse practitioner and autism specialist, I often see families who ask about medicine. Today was no exception. The third family on my schedule was that of a delightfully engaging 7 year old who loves Thomas the Tank Engine and airplanes. While he has made substantial progress in many areas—language, changes in routine, self-help skills—he continues to struggle with attention problems and anxiety. His family described the many behavioral and educational interventions in place to help him. They worried that these difficulties would limit his learning and success. They wondered what I thought about medication.
The decision to use medicine to treat challenging behaviors is a difficult one. Some childhood disorders have an obvious treatment–diabetes is treated with insulin, for example. Best treatment for a child with autism is not so clear cut. Hearing parents talk about their stress around these decisions, I began thinking about new ways to partner with families in the decision-making process.
It was on this quest that I learned about Shared Decision Making. In a nutshell, this describes a process for making a decision when there is not one clear “best choice.” Patients, families and health care providers work together to make a decision while considering risks and benefits in the context of patient and family values and preferences.
Sharing in these decisions, however, is easier said than done! Families often need help conveying the nature of the role they want to play. Often, they also need help taking stock of their personal values and preferences as they relate to medications. Providers, in turn, need to convey risk and benefit information in ways that makes sense to families.
“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their health care providers to make decisions that reflect the family’s goals and values for their child.
From first-hand experience, we know that this decision aid can help families move through the decision-making process before, during or after meeting with a healthcare professional. The family with whom I met this morning, for example, had used the toolkit before their appointment and brought a printout of their worksheets. When I asked them how they saw their role in the decision, they told me that they would like information and options, but that they would make the final decision. They were able to express their values, including that they were generally a “no medicine family,” that they generally preferred natural treatments and that side effects were a big concern for them.
They had put thought into both the risks of treatment and the risks of not treating their son’s symptoms. For instance, they saw a significant risk of his missing out on educational and social opportunities because of his symptoms. Given their concern about side effects, we focused on an option with relatively few of them.
Together, we developed a treatment plan. They left with a prescription and a commitment to review the risks and benefits again that weekend—before making their decision. Although this remained a difficult issue, they spoke with satisfaction about the process we used.
Healthcare providers have likewise expressed great satisfaction with the ATN’s new medication decision aid. “I liked using it with my patients so much,” one colleague told me, “that I found a decision aid about treatment of my own health condition and used it to discuss options with my doctor!” We hope you, too, will find this new toolkit useful. You can download it here. Please let us know about your experience by emailing us at atn@autismspeaks.org.
The Autism Speaks ATN/AIR-P Medicine Decision Aid is the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.
