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Posts Tagged ‘Scientific and Treatment Advisory Boards’

More Evidence of Protection from Prenatal Folic Acid

October 18, 2011 24 comments

A large Norwegian study provides strong evidence that women who take prenatal vitamins containing folic acid, in the weeks before and after conception, reduce the risk that a future child will develop severe language delays—defined as speaking one word or less at age 3. The study, published Oct. 12 in the Journal of the American Medical Association, comes on the heels of a recent American study that found a significantly reduced risk of autism among children born to mothers who took prenatal vitamins before conceiving.

Ezra Susser, M.D., Dr.P.H., Autism Speaks Scientific Advisory Board member

The senior author of the study was Ezra Susser, M.D., Dr.PH., professor of psychiatry and epidemiology at Columbia University’s Mailman School of Public Health and a member of Autism Speaks’ scientific advisory committee. The lead author was Christine Roth, M.Sc., Clin.Psy.D., of the Norwegian Institute of Public Health.

The investigators analyzed pregnancy questionnaires completed by nearly 109,000 pregnant women enrolled in the Norwegian Mother and Child Cohort Study. They compared the prevalence of severe language delay among 3-year-olds according to whether or not their mothers took supplements containing folic acid during the 4 weeks before and 8 weeks after conception. They found that a mother’s use of folic acid during this crucial period reduced her child’s risk of severe language delay from just under one percent (0.9%) to less than a half percent (0.4%). Unlike the United States, Norway does not require folic acid fortification of grain products.

For years, physicians have encouraged women to take prenatal vitamins with folic acid because its use during early pregnancy reduces the risk that a baby will be born with neural tube defects, another disorder of brain development, comments Dr. Susser. “It’s important not to make blanket recommendations based on this one study,” he adds. “At the same time, we’re seeing converging lines of evidence that the effect of folic acid deficiency may be a real clue to the underlying biology that leads to autism and related problems in language development.”

What Happens to Kids with Autism When They Grow Up?

May 12, 2010 3 comments

What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle aged people with autism need? What do they get? Are they happy?

John Elder Robison, an author who has autism and serve on Autism Speaks’ Scientific and Treatment Advisory Boards, recently blogged about an ambitious study, headed up by psychiatrist William McMahon of the University of Utah, which attempts to find answers to these questions.

Read more and comment on John’s post here.

John Elder Robison Decides to Take a More Active Role

March 9, 2010 3 comments

This guest post is by John Elder Robison. John Elder Robison is a free range Aspergian male, having grown up in the 1960s before the Asperger’s diagnosis had come into common use. After dropping out of high school, John worked in the music business and the electronics industry before founding Robison Service, a specialty automobile company in Springfield, Massachusetts. Today, John serves as an adjunct professor in the department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts. He has also served on the public review board for the National Institutes of Mental Health, and he is currently involved in TMS autism research at Harvard Medical School and Beth Israel Deaconess Medical Center. John is the author of Look Me in the Eye, my life with Asperger’s.  John’s writing has been translated into 18 languages and is sold in 60+ countries.  John’s next book, Be Different!,  will be published in the spring of 2011. In addition to his autism advocacy work, John is a lifelong car enthusiast, an avid hiker, a photographer, a music lover, and a world-class champion eater.  He lives in Amherst, Massachusetts.

Readers of my blog know that I’ve been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I’m a fairly action oriented guy, and I don’t like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I’d have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.

Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.

In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals – should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.

I’ll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it’s modeled on the system developed the NIH. I feel it’s a fair way to allocate limited resources and I’ll surely make the most of my opportunity.

I believe it’s a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone’s expectations. I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I’m off and running!

One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I’m involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today’s autistic population.

There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they’ve totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That’s going to be a real challenge because the views of different people on the spectrum are so widely divergent.

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.

At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it’s more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.

Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from “living like anyone else.” To do that, he needs help remediating some of the disabling aspects of his own autism.  However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.

I believe each of us should be free to choose therapies or treatments – nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today’s world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.

At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there’s a lot more to be done.

There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal.

Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.

As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.

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