National Autism Association Asks You To Participate in Study on Autism & Wandering Danger
NOTE: We can always count on National Autism Association to step in regarding wandering and safety. How many of you have experienced that bone chilling moment when you realize your child is not where he or she is supposed to be - and a door is open. Or a gate left ajar. Especially when near the deadly combination of wandering and water. In the current climate of normalizing autism, difficult topics like death by wandering are often overlooked. Please consider participating in this study. Thank you. KIM
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Wandering by children with ASD and other developmental disorders is a significant safety concern. It is estimated that more than 250,000 children with disabilities wander away from adult supervision each year. Few researchers have looked at this major issue, and there has been little focus on prevention measures and the impact that wandering concerns have on families.
Cohen Children's Medical Center of New York is conducting a major national study about wandering, and we very much want you to participate.
It takes just a few minutes to complete the anonymous, online questionnaire. If enough families complete our questionnaire:
- We will have the most representative study done to date - giving voice to as many families as possible
- We can help guide families like yours about what prevention strategies seem to be most effective
- We can document the impact that wandering has on families in terms of activities and household stress
Please click HERE to complete the survey.
You may also go to www.WanderingResearch.com to take the survey, request a copy of our results, and be contacted regarding a follow-up research project related to wandering.
We thank you in advance for your kind cooperation.
Laura McLaughlin
Research Assistant
On behalf of:
Andrew Adesman, MD
Chief, Developmental & Behavioral Pediatrics
Cohen Children's Medical Center of New York
Professor of Pediatrics
Hofstra Northwell School of Medicine
Northwell Health
Visit us at Northwell.edu
An update to my post of December 8th:
ASAN and Ari Ne'eman oppose Avonte's law. They have been tweeting recently, telling people to contact Senator Schumer and ask him to "pull the bill". Here is the link: owl.li/3DbV306Zs5N
They are calling the bill an "assault on our civil rights".
Posted by: Carolyn M | December 10, 2016 at 12:49 PM
No vaccines for our family either - We all have arrived, all of us finally However: the stupidity we exhibited getting here to this position is beyond hhmmmm;== stupid. I am just plain embarrassed about it all to tell you the truth, of how slow we were.
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Posted by: Benedetta | December 08, 2016 at 04:08 PM
Aimme and Eileen I was very lucky with mine.
I see that now. Mine stopped running off around 7 or 8 years old.
I did not know how lucky I was in this matter?
Posted by: Benedetta | December 08, 2016 at 03:56 PM
Aimee Doyle,
From what I remember reading, the neurodiverse opposed the addition of a wandering code to the ICD. I don't know whether they had a position concerning Avonte's law.
Posted by: Carolyn M | December 08, 2016 at 03:24 PM
Kim - thank you so much for sharing this!
Posted by: Wendy Fournier | December 08, 2016 at 10:02 AM
Patience- most importantly we need research into how to reverse/correct the vaccine damage done to our children. The future of our children with a lifelong condition of autism caused by vaccines is totally unacceptable to me as a parent and should never have been allowed to happen. I have heard many horror stories too about adults with autism wandering away from group homes and one friend's son was left at the gym for several hours before the family found him. I wish you and your son peace of mind for a better future!
Posted by: Gayle | December 08, 2016 at 07:53 AM
I also completed the survey and I made a point of noting that wandering does not stop in early childhood but can persist through adolescence and young adulthood.
My son vanished the first time while we were at a large amusement park - the second time while we were hiking with our dog in a national park. Both times he was found (and okay) within a couple of hours, but we were incredibly frightened. We have friends who son packed a suitcase, took a $20 bill, and rode a bus from Maryland to DC. It took most of the day to find him. We have another friend whose son vanished during a community outing for adults with disabilities. He was not found until late that night,.
I have the sense the neurodiversity movement does not take this issue very seriously. Let me know if I'm wrong, but I'm under the impression that they have opposed legislation that would help autistic children and adults who wander. Apparently designating a child or adult as a "wanderer" or
"bolter" is "stigmatizing" and portrays a "negative view of autism".
Posted by: Aimee Doyle | December 07, 2016 at 06:24 PM
I completed this survey, but clearly the problem of wandering throughout the lifespan was not considered. My 54-year-old son is high-functioning, but education and job training ended when he turned 22. After disappearing many times during his 20s, he would be found in jail or one of the state hospitals in Massachusetts. Finally, at age 29 he was admitted to the Westborough State Hospital. There he had a job, and job training at the Agnes Clarke Memorial Workshop. Then, as Massachusetts closed down its state hospitals, he was discharged to a "community" group home shortly after he turned 40.
He has repeatedly run away from his group home. In 2009 he was missing for 7 weeks +2 days before being found. The police took him to the ER at Cambridge Hospital, and they discharged him to the Quincy Mental Health Center (QMH) where he remained as an inpatient for several weeks. Then he was discharged back to the group home, and QMH was closed by the Department of Mental Health.
Last year he ran away several times, but when found and taken to an Emergency Room he was asked if he were a danger to himself or others. When he responded no, he was immediately discharged to the street, without even any physical assessment. My son has developed "metabolic syndrome" from all the psych meds he has been given. We have no history of diabetes in our family at all. Psych meds are all metabolic poisons, as much as any vaccine.
Be forewarned about the future. Autism is a lifespan condition. Autism is not to be graciously accepted. We need to demand research into all possible reasons for the huge increase in autism prevalence since the 1990s.
Posted by: Patience (Eileen Nicole) Simon | December 07, 2016 at 09:26 AM