In an ongoing effort to understand autism spectrum disorder (ASD), the Interactive Autism Network is launching another online survey (the Pregnancy and Birth Questionnaire) about the pregnancy and birth experiences of mothers raising children with autism. Researchers will analyze any “potential links between prenatal, pereinatal, or neonatal factors” and autism, such as specific medications, foods, fertility treatments, ultrasounds, pregnancy and birth complications (including illness or infection), and induced labor.
In just three weeks, the Interactive Autism Network has received 856 survey participants, primarily parents with children who are autistic. Preliminary data from the survey, focusing just on children, was released this week in the report, ”IAN Research Report: Elopement and Wandering.” IAN discovered that about 50% of kids with autism attempted to wander off between the ages of 4 to 10 and about 30% continued to wander between ages 7 to 10. Half of the parents had kids who wandered off long enough to cause significant worry and concern. Plus, about 35% of the kids were rarely able to communicate their name, address, or phone number.
The survey also reported 58% of the parents ranked wandering as the most stressful behavior related to autism, and 64% were prevented from pursuing family activities because of the wandering. Only 19% of the parents have received guidance from a psychologist or mental health professional while only 14% have received guidance from a pediatrician or physician.
A high number of parents (67%) also reported they didn’t see any seasonal pattern with wandering, and the top 5 reasons (in order) they believed wandering happened was because their kids: enjoyed exploring, liked to visit a favorite place, wanted to escape demands and anxieties, wanted to pursue a special topic, and wanted to escape sensory discomforts. Read the full report of the preliminary results at Interactive Autism Network.
The Interactive Autism Network, an online project that aims to collect data about autism spectrum disorder (ASD), recently launched the first nationwide survey to study the experience of wandering (or elopement, bolting, and escaping) among people with autism.
Individuals with autism have a higher tendency to wander for extensive amounts of time, putting them at risk for trauma, injury, or death. “Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” states Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. Recently, 4-year-old Jackson Kastner drowned after wandering away from his home in Monroe County, MI, while four years ago, a 7-year-old boy wandered out of his classroom and ended up at a four-lane highway. Despite being returned to school safe and sound, poor school supervision continues and he still wanders out of the classroom today.
To understand this wandering behavior and determine who is at risk, IAN is asking all families in the U.S. autism community to participate in the survey, which is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks, and Global Autism Collaboration. IAN is asking for information from families with children and dependent adults who either do or do not wander. To take part in the survey, you must register online at www.ianresearch.org. If the necessary sample size for the survey is reached, preliminary data might be available on April 20, 2011.
The survey will help researchers answer important questions:
How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
Which individuals with ASD are most at risk? At what age?
What burden do efforts to thwart elopement behavior place on caregivers?
What can be done to protect individuals with ASD and support their families?
If you have a child with autism, please consider taking part in this survey.
Gene Tests Label Kids Sports Stars Scientists have identified several genes that may play a role in determining strength, speed and other aspects of athletic performance. Marketers have begun to sell genetic tests based on these findings online for up to $200. Some customers say the test results help them steer their children to appropriate sports. But skeptical doctors and ethicists say the tests are putting profit before science. [MSNBC]
Hot-to-Trot Ponies? Dolls That Wax? Toys Get Tarted Up
Toy manufacturers began following the marketing strategy “Kids Getting Older Younger” when they realized that toys marketed towards kids between the ages of 8 and 12 were attracting kids who were in the 3-year-old to 8-year-old age range because they wanted to emulate their older brothers and sisters. [Today Parenting]
Anesthesia For Kids Necessary, But Cognitive Danger? An estimated 4 million children receive anesthesia every year, but little is known about their effects on the developing brain. A growing body of data from studies in animals suggests that these drugs could adversely affect neurologic, cognitive, and social development of neonates and young children. [Medical News Today]
Mexico Puts Its Children on a Diet By all measures, and the obesity starts early. One in three children is overweight or obese, according to the government. So the nation’s health and education officials stepped in last year to limit what schools could sell at recess. [The New York Times]
We were all saddened to hear about the passing of Elizabeth Edwards. Last week, a beloved teacher at my daughters’ school died after an aggressive recurrence of her breast cancer. The principal emailed parents this link about helping young children understand death from the National Network for Child Care, and I think it makes important points.
Of course, explaining cancer to children can seem particularly hard (after all, its unpredictability is difficult for adults to grapple with too). This is good piece on parents.com about about how to tell your child that you have breast cancer. And here is an articulate portion of an article from the American Cancer Society about explaining what cancer is:
Young children (under the age of eight) can be told that the body is made up of lots of different parts. When someone has cancer, it means that something has gone wrong with one of these parts and it’s stopped doing what it’s supposed to do. Part of the body is no longer normal. Over time, a tumor or lump has developed, or a bunch of bad cells started to grow (in the case of leukemia and lymphomas). The tumor (or the bad cells) should not be there. Cancer can keep growing in other parts of a person’s body, so the person needs treatment to either take out the tumor or stop it from spreading to other places. Some kids may not have any questions at first, but invite them to ask you later if they think of any. Older children (in general, ages 8 and up) may be able to understand a more complex discussion. They may want to see pictures of cancer cells or read about cancer treatment. Again, encourage them to ask questions that they may think of later.
If you missed the beautiful piece in the December issue about Jennifer Gould Keil’s loss of her husband to melanoma and how she helped her children come to terms with this death, you can read it here.
As parents, it’s inevitable that you love your kids and want to spend a lot of quality time with them. However, spending every waking moment with your kids may not be the best thing for you or your kids.
The Wall Street Journal believes “intense parenting comes with a cost.” Based on recent research from a Focus on Workplace Flexibility conference, the percentage of parents (especially dads) spending time with their kids have increased dramatically since the 1960s. However, the percentage of parents multitasking has also increased, which means that even as parents are spending more physical time with their kids, quality time is lacking.
Some parents are giving up important healthy rituals such as regular sleep, grooming, planning and cooking meals, cleaning, exercise, and leisure time with the spouse. As parents multitask and split their attention, they feel increased stress, frustration, and irritation.
By sacrificing certain things for their kids, parents are losing focus on themselves to relax, breathe, and recharge. Parents are becoming more distracted and distant.
As parents, do you multitask when you’re with the kids or do you focus your entire attention on them? Do you take time to reboot on your own or with your spouse?
Parents Are Junkies
In the last few months, parents and researchers have been at war. Evidence has piled up to show that becoming a parent does not make people happier; it makes them unhappier. [Slate]
Even Short-Term Poverty Can Hurt Kids’ Health Being poor for even a short period of time can have lasting health implications for children, according to a new report by the Children’s Hospital of Philadelphia. 15.5 million children are living in poverty in the United States, that’s one in five children according to the Census Bureau. [CNN Health]
Got a unique toddler toy or product idea? Product manufacturer Sassy Baby is teaming up with invention platform Edison Nation to find the next great toys and products that will promote child development and growth. The “Sassy Innovative Product Search” contest is on the lookout for innovative toddler feeding items and infant (birth – 6months) crib items that include mobiles, soothers, and bouncers.
The best inventions will appeal to moms, have a high developmental value, and be easy to use. You’ll need to submit a drawing, photo, or video describing and demonstrating your product by December 20, 2010. The best inventions will be chose and produced commercially. Plus, winners will receive a $2,500 advance payment and share sales for up to 20 years. Go to Edison Nation to learn more about being the next great toy and product innovator. So put your thinking cap on and start inventing!