Feeds:
Posts
Comments

Archive for June, 2009

Dr. Eric London has announced his resignation from the Autism Speaks Scientific Affairs Committee.  London is the Director of the Autism Treatment Laboratory at the New York State Institute for Basic Research in Developmental Disabilities. He is also Chief Scientific Advisor of the New York State Autism Consortium and a member of the Autism Science Foundation’s Scientific Advisory Board.  He is the co-founder of the National Alliance for Autism Research (NAAR).  

Dr. London’s letter of resignation is below:

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.


If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations.  The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous.  Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts.  By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated.  The lowering of the vaccination rate has already led to deaths.  If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease.  I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.
 
In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately.  If anyone would like to discuss this with me further, please do not hesitate to contact me.
 
Sincerely, Eric London MD
 
Read more about autism and vaccines here
 

Read Full Post »

By Liane Kupferberg Carter

Here’s the question lately that keeps me up nights: what happens to kids with autism when they’re  not cute and little anymore?

Most of the current funding into autism research and intervention is aimed at the youngest children.  But besides the obvious argument – that it is critical to intervene when they’re young because you get more bang for the buck  – it’s also a fact that it’s a lot easier to raise money for a disorder when you can  feature the face of an adorable toddler.

Most of the conferences I’ve attended and articles I’ve read  focus on autism as a childhood disorder.  The preponderance of  cognitive and emotional development studies look at children.  When they do focus on older children, it often seems the emphasis is skewed to children at the “higher” end of the spectrum.  As the parent of a moderately functioning teenager with autism, I’ve been wondering lately about the subtext behind all these studies and workshops. Is there an unspoken assumption that those at the more moderate or  lower functioning end of the spectrum aren’t worth it, that  they are just too far gone to help?

But if you accept the statistic that 1 in 150 children in this country have autism, we are looking at a staggering number of rapidly aging young adults who are going to require life long services and supports.  According to the Autism Society of America , in the next decade we can expect four million people to be diagnosed with autism.  All those young adults will be vying for the same woefully insufficient adult services. Yes, the state runs programs, but the waiting lists are long, and depend on the  vagaries of the state budget. Times are tough; dollars and resources scarce.

We need far more research and  financing directed at the programmatic needs of adults with autism.  That means better targeted studies looking at best practices, interventions and educational protocols for teens and young adults with autism.

We are facing an autism tsunami, and the first wave  is aging up and out of the school service model quickly. Once the structure and socialization of school ends, and that little yellow school bus stops coming to the door, it is completely up to each family to figure out what to do next.

It’s keeping a lot of us up nights.

 

Liane Kupferberg Carter is the captain of Team Scarsdale C.H.I.L.D., the nation’s top fund raising walk team for Autism Speaks. Her work has appeared in the New York Times syndication, Parents, Child, McCall’s, Cosmopolitan, Glamour, Newsday, and numerous literary journals. She is a 2009 Memoir Journal prize winner for “Love is Like This,” an essay on mothering a son with autism.  She is currently working on a memoir, Making Music Anyway: Raising a Child with Autism.

Read Full Post »

Proceeds from sales of Autism's False Prophets support the Autism Science Foundation

Proceeds from sales of Autism's False Prophets support the Autism Science Foundation

By Robin Hausman Morris

 

Punch drunk as I am, required to read every alert regarding vaccine injury, I was struck by the facts issued on WKRG.com News 5. Reported by Kesshia Peyton, who interviewed Dr. Paul Offit, there is a surge of parents who are very angry at the diversion that anti-vaccine activists have created.

Tina Brown, mother of 2 boys with autism, decided not to vaccinate son Dylan because his brother Dalton had been inoculated and was subsequently diagnosed with autism. Sadly, even in the absence of vaccines Dylan demonstrated symptoms of autism at 4 months of age. (video interview is below). Mrs. Brown believes that there is great need for research in environmental, genetic, and DNA reasons for the onset of autism. She is part of a growing number of parents who want answers, other than the constant mention of vaccine injury.

Dr. Offit, author of Autism False Prophets, believes that “those who oppose vaccines have taken the autism story hostage”. He agrees that there is profiteering and quackery in this arena. It is the fundamental action of false prophets, to entice and recruit vulnerable families. Frankly, I agree, but “snake oil” medicine is not relegated to autism. Parents need to be vigilant and at the same time practical about the information that is presented. Sometimes it is very painful to tease our emotions from clarity of thought. We so desperately need a reason, a cure, a miracle, our focus is skewed, and ultimately our children are victims again. I don’t have the answers, but I sure want them. Now.

 
Robin Morris is the mother of adult quadruplets, one of whom is diagnosed with autism. Her son has been viewed as “pioneer,” as therapists utilized behavioral interventions with him nearly 20 years ago. Robin’s efforts to elevate autism awareness and support autism research prompted her to join the National Alliance for Autism Research (NAAR) in 2002. Her son’s team, “Paulie’s Promise,” raised several thousand dollars for the premier Walk Far for NAAR in her area. In 2006, NAAR merged with the Autism Speaks. Robin currently writes for Examiner.com and Autism Spectrum News.

Read Full Post »

BoyAlone hc cBy Karl Taro Greenfeld

When I was writing Boy Alone, trying to understand the emotions, jealousies and rage of having a low-functioning autistic brother and figure out how it had dominated my family dynamic when I was a boy and shaped my adult view of the world, I found myself wondering why this hadn’t been my first book. In this age of memoir as a popular form, why had I waited until I was 42, and my fourth book, to begin writing about the person who had the greatest impact on me? The explanation, I realized, was that until I had children of my own, I didn’t understand how abnormal my own sibling relationship had been. My two daughters, Esmee, 9, and Lola, 7, both developing normally, have shown me, in both simple and profound terms, how much I had missed.

They are playmates, allies, enemies, antagonists, advocates and nemeses, sometimes simultaneously. They form their own little sub-state within the larger state of our family, a not-quite autonomous province, at least not yet autonomous, that has its own intrigue and aspiration. When they lack for friends their own age, they make do with each other. They can find inside the family the company of a peer rather than parent, and their lives, I suspect, are that much richer for having that bond and companionship. My wife, one of four siblings in a close family, intuitively understands these ties; I still find them perplexing.

Noah, in many ways, was a brother by blood only. I suspect, and I have no way of confirming this, that if I had vanished from the earth at some point during our childhood, he would have noticed my absence but I don’t think he would have been saddened. Yet if Noah had disappeared—this was a real worry for me; as he grew older my family constantly discussed and worried over when and where he would be institutionalized—then I would have been crushed. This lack of emotional reciprocity never occurred to me until now, and I’m still not sure if my love for Noah is diminished by this or simply numbed.

Yet I didn’t understand, or verbalize, how distorted our sibling relationship was until I had children of my own. Then I saw that Noah had impacted my view of the world in more ways than I had previously acknowledged. When I have written about autism in the past, I sometimes received letters and notes from parents—almost always parents, by the way, rarely siblings—who lecture me for not recognizing the gift that Noah has given me. He is a blessing of some kind, these folks insinuate, and I have stubbornly refused to accept it. I looked for that gift in my own life and see the sacrifices my family made: My parents moved us across country to a better program at UCLA. They opened their own day care center for the developmentally disabled. Our home, as the parents of low functioning autistics can probably envision, was a jumbled-up mess.  We were not a happy family. My father wrote eloquently about us in his own series of books about our family, starting with A Child Called Noah. (Perhaps another reason I didn’t write very much about Noah until now: three books about my brother seemed like enough. Indeed, when I brought a copy of Boy Alone to Noah’s house to give to him, he seemed indifferent; he’s used to being the center of attention.) I wish I could say that Noah’s autism was a gift, but that would be a lie. It was simply a fact of my life that I struggle not to turn away from.

Karl Taro Greenfeld is the author of Boy Alone: A Brother’s Memoir, a wrenching account of growing up with a profoundly autistic younger brother.

Read Full Post »

By Robin Hausman Morris

I have been worried about the phenomenon of celebrity medicine. Every day, another actor or comedian takes a position on vaccine injury. The notion of an education procured at the “University of Google” is getting old. Not only is it tedious, it’s dangerous. Perhaps health care is being tested in this country, but this epidemic takes on quite another posture.

Dr. Virginia Keane, President of the Maryland Academy of Pediatrics, tells the Baltimore Sun that “We are at the precipice of a crisis when it comes to vaccines.”  Dr. Keane states: “Celebrities spread false accusations of danger, perpetuating the myth of a causal link between vaccines and autism. When science does not support their statements, they accuse the pediatric physician community of being in the pocket of the vaccine companies, accepting large grants and small gifts in exchange for our continued support of vaccines.”

I have no doubts that in all communities, financial, medical, educational and every sector of human relations that there are disingenuous characters. Nevertheless, when celebrities “accuse,” we are victims of our own vulnerabilities. I reiterate. Who will be the next subject for accusation, and why are we listening?

I remain steadfast in my concern about the dangers in “celebrity medicine.”  It’s vaccines today, what’s in store for tomorrow, I ask. This is not a rhetorical question. When is media clout is justifiable?  Actor Dennis Quaid had every right to fight for more stringent hospital guidelines regarding medicine dosage. His twins were given a massive overdose of a blood thinner. His crusade was justified and certainly a win-win for public protection. There was no debate. Quaid did not posture himself as a physician or scientist. The facts spoke for themselves.

However the waters are muddied when panic is fostered by Playboy centerfolds and various career seeking opportunists….and the ironic thing is that I do believe that they love their children. It’s simply that the intoxicating effects of world attention seem to endow them with a  “shingle” for sage guidance. Sadly, the limelight is a double-edged sword. It gives us entertainment pleasure, yet canonizes the participants. Whether or not we as a people crave that need for idolatry, it should be relegated to the idiosyncrasies of pop culture, not life threatening perceptions and misconceptions.
 
 
Robin Morris is the mother of adult quadruplets, one of whom is diagnosed with autism. Her son has been viewed as “pioneer,” as therapists utilized behavioral interventions with him nearly 20 years ago. Robin’s efforts to elevate autism awareness and support autism research prompted her to join the National Alliance for Autism Research (NAAR) in 2002. Her son’s team, “Paulie’s Promise,” raised several thousand dollars for the premier Walk Far for NAAR in her area. In 2006, NAAR merged with the Autism Speaks. Robin currently writes for Examiner.com and Autism Spectrum News.

Read Full Post »

From: Science Based Medicine

By Dr. Val Jones

Much to my surprise and delight, my recent blog post about Jenny McCarthy’s  “educational” video was picked up by several other blogs and websites, resulting in a small flood of emails applauding my efforts to expose dangerous pseudoscience. I had braced myself for what I assumed would be an onslaught of hate mail (what else would irrational folks do about a sensible warning message?) and found that instead I received a small number of high-fives from advocates and health organizations committed to cutting through the rhetoric and providing accurate information about vaccines. Perhaps the hate is still in the mail?

I began wondering who is in the majority on the issue of vaccines – those who want to study concerns carefully and accept what the science shows, or those who are fixated on blaming vaccines for diseases they don’t cause, despite all evidence to the contrary.

Since the latter are louder than the former, one does tend to feel as if the world has gone a bit nutty. And when celebrities like Oprah Winfrey promote the unfounded anti-vaccine rhetoric of Jenny McCarthy, sensible parents across the country begin to shudder. But when will this shuddering lead to action?  Read more

Read Full Post »

Study Still Provides Valuable Insights

By Alison Singer

A new multi-site clinical trial of Celexa (citalopram), a medication commonly prescribed to children with autism spectrum disorders (ASD), indicated that Celexa was no more effective than a placebo at reducing repetitive behaviors. Celexa has been widely prescribed to patients with obsessive compulsive disorder, the symptoms of which can appear similar to the obsessive behaviors shown by some children with autism. Nearly 150 children participated in the study and were assigned randomly to receive either placebo or citalopram. After 12 weeks, no differences in positive response were found between the two groups on several key measures. But, the children on celexa did experience far more side effects than the children on placebo, including “activation response” (agitation, increased activity, sleep problems).

SSRIs are among the most widely prescribed treatments for children with autism. Previous, but smaller, studies had indicated some effectiveness in reducing repetitive behaviors.  Of course it is disappointing when a treatment that seemingly has potential to mitigate challenging symptoms of autism is found to be non effective. But treatment studies like this one are valuable regardless of outcome; it’s just as important for parents to know what doesn’t work as it is for them to know what works.

Most interesting to me was the placebo response in this study. Approximately a third of the children treated with placebo showed a positive response. This is similar to the studies of secretin, where more children on placebo showed a positive response than did the children on secretin. This strong placebo response in autism argues for caution in studies that are not placebo-controlled.  In an email to me, Dr. Bryan King of Seattle Children’s Hospital, who led the study, suggested that parental change in expectations in some cases “might have created a self-fulfilling prophesy—where if we anticipate that a child will be able to tolerate more, we present him with more—and that can lead to real improvements.  The other thing that happens in the course of a clinical trial is the intensity of scrutiny—it’s also possible when we’re really focusing on behaviors in this setting that we see some (positive) things that we weren’t really paying attention to before.”

Several parents have written that these are the types of studies they hope the Autism Science Foundation will fund; studies that yield actionable, clinically relevant information, regardless of outcome. Indeed I agree that we need many more large, multisite studies like this one to guide and inform treatment practice.

Read the press release. Read the study abstract

AUDIO: To hear and download audio of Dr. King discussing the study, visit: http://www.seattlechildrens.org/home/about_childrens/press_releases/2009/06/004756.asp

Read Full Post »

Older Posts »

%d bloggers like this: