Posts Tagged ‘ interactive autism network ’

Keeping Kids With Autism Close

Tuesday, April 17th, 2012

For parents of children with autism, safety is a real concern. Nearly half of kids with autism try to wander away from a safe area, found a study by the Interactive Autism Network and Kennedy Krieger Institute. Of those children, more than one-third aren’t able to communicate who they are, where they live, or how to reach their parents and caregivers. Tragically, last year 10 children with autism drowned after wandering away.

But there are preventive steps you can take. These tips are courtesy of Autism File, a British magazine and web site.

  1. First, educate your child and explain as best you can what to do if he gets lost, and teach him his name, address, and phone number, hopefully until he can recite it from memory. (I’d add that this is probably not realistic for kids younger than at least 5.)
  2. Alert your neighbors that your child may be prone to leaving the house or yard, and ask them to direct your child back home and/or let you know if they ever see her on her own.
  3. Install wind chimes on your doors and windows. This is a great idea–easy enough to do, and works well to let you know that your child may be trying to leave.
  4. Talk to anyone who cares for your child about this issue, and discuss it with your local police department, too. Share helpful details about your child’s personality and tendencies.
  5. Consider a GPS tracking device for your child so that you’re able to quickly find him if he does get lost. (One we’ve heard good things about: Amber Alert GPS, where you attach the device to your child–such as around the wrist, ankle, even as a necklace–and then track him via your smartphone or computer.)

Image: Red garden swing hanging in garden via Shutterstock.

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Participate in a Survey About Autism and Pregnancy

Tuesday, April 26th, 2011

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.

IAN is looking for mothers  in the U.S. with children (between ages 0 to 17) who do and don’t have autism to participate in the survey.  Mothers who do have kids with autism must have given birth directly to the child. Register for the online survey on the Interactive Autism Network’s website.

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Preliminary Results from Survey on Autism and Wandering

Friday, April 22nd, 2011

Earlier this month, we urged parents to participate in a survey about autism sponsored by the Interactive Autism Network.  The survey aimed to study and understand wandering behavior among children and adults with autism.

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.

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Participate in a National Survey About Autism and Wandering

Wednesday, April 6th, 2011

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.

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