Last week, I attended the 5th Anniversary Celebration of the Autism Science Foundation (ASF), which provides funding for scientists who are doing cutting-edge research. To mark the occasion, ASF held a Ted-Style symposium, at which leading experts shared insights on the causes, diagnosis, and treatment of autism. Here’s what I found to be most interesting.
Autism organizations that fund research need our support because the government can’t foot the bill. “We love you, but we have no money,” Congress recently told Dr. Thomas Insel, director of the National Institute of Mental Health (in so many words). His response: “Research is an investment, not a cost.”
Although children who are diagnosed with autism at a young age are most likely to benefit from early intervention, only 20% of children are diagnosed before age 3. A study by Dr. Ami Klin, director of the Marcus Autism Center at Children’s Healthcare of Atlanta, found that babies and toddlers who don’t make eye contact with adults (and instead look at an adult’s mouth) are more likely to develop autism. This finding could pave the way for a simple and cost-effective way to screen all young children for the risk of autism—so that treatment can begin before 24 months of age.
Girls need a greater “genetic hit” than boys in order to develop autism. Dr. Joseph Buxbaum, head of the Laboratory of Molecular Neuropsychiatry at Mount Sinai School of Medicine, in New York City, explained that autism may be an X-linked disorder, which would help explain why it is more common in boys. Girls have two X chromosomes, so if the mutated genes that cause autism are on the X chromosome, a girl could also have a “healthy X chromosome” that counters the influence of the X chromosome with mutations, said Dr. Buxbaum. Boys, on the other hand, have one X chromosome and one Y chromosome. Based on the latest genetic discoveries, researchers think it’s possible to use animal studies to develop new drugs that can affect the underlying physiology of autism.
Parents should come together to fight for evidence-based interventions in schools, not just more hours of therapy and 1:1 support for students. Dr. David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania’s Perelman School of Medicine, has studied how well public-school teachers implement the most effective treatments for children with autism. He said that it’s crucial for school administrators to provide ongoing support for classroom teachers who are using these well-studied interventions and that teachers need to be rewarded for adhering to them.
It takes brains to solve autism. This is a difficult topic to discuss, but researchers need to study the abnormalities in the brains of people with autism in order to speed us along to a cure, said Dr. David Amaral, a research director of the MIND Institute at University of California, Davis. Scientists made major advances in the understanding of Alzheimer’s disease by studying the brains of patients who had died of the condition, and those findings led to the development of all the current drugs that are helping patients. Autism BrainNet is a new initiative that will collect brain tissue to collaborate on groundbreaking brain research, and “It Takes Brains” is an outreach program that will encourage parents to register to donate their child’s brain to help scientific research.
Studies have not shown that any alternative medicine is beneficial for autism. Supplements are not regulated by the FDA, and a recent study found that close to 9 percent of parents are giving their child treatments that are considered potentially unsafe, invasive or unproven. Dr. Paul Offit, a professor of pediatrics at the University of Pennsylvania, summed up the bottom line: “If an alternative medicine works, then it’s a medicine, and if it doesn’t, it is not an alternative.”
Prince William and Duchess Kate were criticized for taking a vacation alone together and leaving 8-month-old Prince George at home with her parents. After all, not everyone feels comfortable leaving their infant at home with a caretaker. But defenders of these “second honeymoons,” as they’re affectionately called, say it’s a chance to reconnect with your spouse post-baby. We want to know, Do you think it’s ok for new parents to take baby-free getaways? Take our poll, and share your comments.
On Monday, April 14, HBO will air a 40-minute documentary called “One Last Hug: Three Days at Grief Camp.” Even if you don’t have a grieving child in your life, it’s so worth watching. I came away with a much better understanding of what a child goes through when a loved one dies, and how crucial it is that every child has the chance to speak openly about his feelings.
In the movie, we watch as kids ages 6 to 17 attend Camp Erin Los Angeles. Camp Erin is a program started by baseball player Jamie Moyer and his wife Karen, in honor of a teenage fan named Erin Metcalf, who died of cancer when she was 17. Camp Erin Los Angeles is run by the amazing staff of Our House Grief Support Center, led by Lauren Schneider, LCSW, the clinical director of child and adolescent programs. Schneider explained the important goal the movie accomplished: “It conveyed the fact that children are completely capable of processing grief–cognitively and emotionally–and so they need opportunities to do that. A lot of people think that kids need to be sheltered and even excluded from important deaths in the family. But children benefit from the process of saying goodbye and engaging in mourning rituals.” And that’s exactly what the 43 Camp Erins located all over the country–which children attend for free–set out to do.
The film opens with a beautiful ceremony where each child walks up on a stage, announces her name and the name of her loved one who died, and places a photo of that person on a giant “memory board.” (When one young boy sobs while trying to say his father’s name, you will too.) We see other important activities, such as a grief hike where children look for rocks painted with key words such as “confused” and “angry,” and then discuss how that emotion may apply to them. On the last night, the powerful Luminary Ceremony allows children to say goodbye to their person by writing a message or drawing on a lantern that’s lit and set adrift across the pool. (That’s what’s depicted in the photo above.) This is a crucial exercise, because of the 150 children at the camp, only a very few actually got to say that goodbye in person.
But it’s not all tears; the program is designed to include many lighter moments and even has an entertaining closing ceremony for the families that arrive on the final day. And when the children leave, they seem to feel lighter, too. They’ve finally had a chance to meet children who are feeling the same kind of pain they do. They don’t feel so alone, so different from their peers. They now have the words to express their grief. And as we see during the closing credits, when some of the campers’ parents describe the difference in their children after attending Camp Erin, they are truly on a path to healing.
Click here to find a Camp Erin near you or learn more about The Moyer Foundation.
Parents for Window Blind Safety published the PSA “In An Instant” via YouTube earlier today. Linda Kaiser of St. Louis, Missouri, who founded the advocacy organization with her husband Matt, hopes to increase awareness about how easily and quickly these tragedies can happen. “There are just a lot of people out there [with a] misconception of how these accidents occur,” she said. “We’re trying to bring to life how fast they occur—the fact that they can occur in the same room with a parent.”
Already in 2014, there have been four deaths in the U.S. from children becoming entangled in window blind cords. In the past 10 years there have been 226 accidents of this kind resulting in 112 deaths and 114 strangulation injuries. Parents for Window Blind Safety is a nonprofit dedicated to ending preventable deaths and injuries from window blind accidents by providing the most up-to-date facts, raising awareness, and working to create safer standards in the industry. Founded in 2002, the network also serves as a support system for parents who have lost a child, as the Kaisers lost their daughter, Cheyenne Rose.
The video is an emotional reenactment and important reminder of the potential danger in our homes. It also serves as a reminder that safety kits from manufacturers may not provide adequate protection. According to the Consumer Product Safety Commission over 40 percent of accidents occur on products that complied with the ANSI national safety standard. These accidents are preventable by going cordless with all window blinds.
Watch the PSA produced by RedCastle Productions here:
This guest post is from Marc Hurlbert, Ph.D., executive director of the Avon Foundation Breast Cancer Crusade. He shares important research showing the large disparity in breast cancer survival rates between white and black women—mainly due to societal factors, such as access to early detection programs, screenings, and quality treatments—and tips on what can be done to close the gap.
Many young mothers are often too busy to think about their health between running on little-to-no sleep and worrying about their around-the-clock childcare schedule. But it is critical to take care of yourself and understand your health risks, especially since women are at an increased risk for developing breast cancer for up to five years (or longer) after giving birth, known as pregnancy-associated breast cancer.
Why? Because the hormones that prepare the breast to lactate can also fuel a cancer cell. Although pregnancy-associated breast cancer is rare, and less than 5% of breast cancers cases are found in women younger than 40 each year, moms in their 20s and 30s who are too young to be screened still need to be aware and report any changes in their breasts to their doctor.
And while medical researchers have made significant advancements in improving breast cancer survival rates, many women—especially black women—have not benefitted, and the disease remains the leading cause of cancer death among women worldwide.
An Avon Foundation for Women-funded study on racial differences in breast cancer found a significant disparity in breast cancer mortality between black and white women in the United States over the last 20 years. Researchers found that 39 of the largest U.S. cities studied have a black:white breast cancer survival gap, and of the 39 cities, 23 were statistically significant. The disparity has also widened in 35 cities, from 1990 to 2009, because even though there have been advances in diagnosis and treatment, many black women were not able to access them.
The study’s results are alarming, but because the contributing factors are largely societal, we believe this problem can be remedied. Here are four important steps all women can take to reduce their risk and help close the gap:
Seek access to early detection programs and screening. Low-income, uninsured, and underinsured women can visit www.cdc.gov/cancer/breast to find low-cost breast cancer screenings across the United States.
If you are diagnosed with breast cancer, follow up immediately with your doctor to ensure timely and higher quality cancer care. Patient navigators can help you, your family, and caregivers navigate the medical and financial maze of the health care system, from an abnormal screen through diagnosis, treatment, and survivorship. Click here to find an Avon-funded hospital in your home state.
New moms should breastfeed immediately after giving birth, if they are able to. Breastfeeding may help lower breast cancer risk. Experts recommend nursing a newborn within an hour of giving birth, if possible, and not supplementing with formula while in the hospital. Doctors recommend new mothers should breastfeed for at least six months.
Get some exercise. Brisk walking for one hour a day can your reduce risk by more than 15%. The American Cancer Society recommends you engage in at least 45 minutes of physical activity at least 5 days a week. Why not sign up for an Avon Walk for Breast Cancer?
For more information on how all women can reduce their risk, read more facts here. Learn more about the study and what the Avon Foundation is doing to address disparities in breast cancer.
Image: Women wearing pink for breast cancer via Shutterstock