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Showing posts with label Interactive Autism Network. Show all posts
Showing posts with label Interactive Autism Network. Show all posts

Wednesday, August 14, 2013

Wandering and Autism

[A]t least 14 children with autism known to have died this year after slipping away from their caregivers. All but one of them drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, 11-year-old Anthony Kuznia, was found Thursday in the Red River after a 24-hour search near his home in East Grand Forks, Minn.

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Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents.

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The study in Pediatrics found that half of parents with autistic children had never received advice or guidance from a professional on how to cope with wandering.
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[Bob Lowery, executive director of the missing children division of the National Center for Missing and Exploited Children], as well as many advocates for autism-affected families, have been exploring ways of developing a national alert system tailored to deal with wandering incidents. He said the existing Amber Alert system is not an option — it's limited to cases where a child is believed to have been abducted by someone who poses a danger to them.

One option being looked at is Project Lifesaver, launched in 1998 to help search-and-rescue teams find missing people with Alzheimer's disease, dementia, autism and Down syndrome. Funding is an issue, however: For the program to function, the people at risk of wandering must wear transmitter bracelets and emergency services must have appropriate tracking equipment.
The driving force behind the recently published research on wandering was the Interactive Autism Network, a program headed by Dr. Paul Law at the Kennedy Krieger Institute in Baltimore.
In Eugene, Oregon, KVAL reports:

Friday, January 11, 2013

Study of Bullying

Nearly 70 percent of children with autism spectrum disorders (ASD) experience emotional trauma as a result of being bullied, according to findings published today in the Journal of Developmental & Behavioral Pediatrics, while a significant portion were concerned for their own safety at school. The study also found that children with ASD who presented with pre-existing psychiatric diagnoses were at increased risk for involvement in bullying, with children diagnosed with ASD and attention deficit hyperactivity disorder (ADHD) or depression at highest risk of being victimized over a one month period. This study was led by researchers from the Interactive Autism Network, a project of the Kennedy Krieger Institute that is the nation’s first online autism registry with participants from 47 states, making it the largest collection of autism data in the world.
“Recent research indicates that children receiving special education services are at risk of being victimized at higher rates than regular education students,” says Dr. Paul Law, senior study author and director of the Interactive Autism Network at Kennedy Krieger. “Our findings show that not only are these children being bullied more, but they are also experiencing significant short-term, and likely long-term, effects of being bullied.”
Participants in the study included parents of 1,221 children with ASD recruited through an online questionnaire. Researchers utilized the Bullying and School Experiences of Children with ASD Survey, a 63-item questionnaire, to collect key data from parents regarding their child’s school environment, involvement in bullying, and the child’s educational and psychological functioning. Additionally, researchers used the Parent Observation of Child Adaptation (POCA) to reflect parents’ ratings of their child’s behaviors and level of psychological distress after a bullying incident. The study’s findings on the characteristics and psychiatric comorbidities most associated with bullying are below.

Monday, October 8, 2012

Study of Wandering

Connie Anderson and colleagues have a study of wandering in Pediatrics.  The abstract:
OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.
The New York Times reports on the study:
“I knew this was a problem, but I didn’t know just how significant a problem it was until I really began to look into it,” said Dr. Paul A. Law, senior author of the study and director of the Interactive Autism Network, a registry that is a project of the Kennedy Krieger Institute in Baltimore. “This is probably one of the leading causes of death and morbidity for kids with autism.”
Advocates for families affected by autism say the findings underscore the need to raise public awareness and alter policy. While Amber alerts are used to mobilize the public when a child is believed to have been abducted, for instance, generally they are not used when a disabled child goes missing, said Alison Singer, president and a founder of the Autism Science Foundation, one of the organizations that supported the study.
Emergency responders should receive special training on how to search for autistic children who are nonverbal and often scared by lights and sirens, she said. Emergency personnel also need to know to check streams or ponds, since many children with autism are drawn to bodies of water, as well as highways.
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The idea for the new study came from a family coping with autism, and it was financed by several advocacy organizations. Researchers surveyed families who had a child with autism or a related disorder between the ages of 4 and 17.
Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.