Sunday, December 29, 2013

Autism Reality Check: Wandering and Tragedy

Some promote the view that autism disorders are "gifts" if only society could understand, change its ways and accept the gifts. The autism as a gift view, is irrational nonsense. It thrives by simply ignoring the evidence of challenges presented by autism disorders including those like wandering or elopement which sometimes lead to tragic consequences.

Like many with autism disorders my son  once left our home unnoticed - he slipped out of the house while I was occupied on a business call. When the call ended and I couldn't find him I called 911 and was able to recover him safe and sound from a local convenience store where a good Frederictonian had taken him after stopping his truck on the busy road to take him to safety. We had a behavior analyst work with him to teach him not to leave home unattended and we increased our attention to his whereabouts from intense to unrelenting,  making sure we know at all times, every minute,  every second of the day, where he is.

Wandering, some times with tragic results, is an autism reality that is often reported in the news but not always acknowledged by those who promote the nonsense that autism is a gift not a disorder or who downplay the serious realities presented by autism disorders:

American Academy of Pediatrics: Study Finds Nearly Half of Children with Autism Wander Off , For Release: Monday, October 8, 2012 

"Anecdotally, parents of children with autism spectrum disorders (ASD) report that their children often place themselves in danger by wandering off, or “eloping.” For the first time, a study has determined the frequency of these elopements in children with ASD and the impact on children and families. 

The study, “Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders,” published in the November 2012 issue of Pediatrics (published online Oct. 8) was funded by several autism advocacy organizations and led and conducted by the Interactive Autism Network at Kennedy Krieger Institute. 

Researchers surveyed 1,367 families with children between the ages of 4 and 17 who had been diagnosed with ASD. Nearly half – 598, or 49 percent – of the families reported that their child had attempted to elope at least once after age 4. Of those, 316 children went missing long enough to cause concern. 

Greater autism severity was associated with increased elopement risk. Children eloped most commonly from their home, a store, classroom or school. Nearly half of parents said their child’s elopement was focused on an intent to go somewhere or do something, versus being confused or lost. Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases. 

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior. 

Until more research can be conducted to develop interventions to address elopement, study authors hope the results of the study will inform families, doctors, educators and first responders who grapple with the consequences of elopement."

Note -The AAP news release above does not mention the study finding, as published in the Pediatrics study report linked above that:

"Elopement may be a significant contributor to mortality in individuals with ASD, which has been reported to be nearly twice that of the general population,3 especially mortality owing to accidents, such as suffocation and drowning.4Despite reports of injuries, fatalities, and increased family burden, little research on elopement behavior in individuals with ASD has been conducted.5"

Many are aware of the autistic Queens, NY youth, Avonte Oquendo who slipped past a  school security desk on October 4, 2013 and has been missing ever since.  Some other recent wandering events, some with tragic conclusions:



"DEVASTATED relatives of the four-year-old "cheeky angel" who drowned in the Clarence River were still struggling to articulate their grief yesterday. Three volunteer divers found the body of Connor Elliott-Graham, still in his Teenage Mutant Ninja Turtle pyjamas, on Boxing Day during a massive air and land search of the tiny sugar cane community of Chatsworth Island, 60km north of Grafton. It's believed that while parents David and Caity slept in the early hours of December 26, their son, who suffers from autism, climbed out of his bed and wandered across the road to the vast river in the state's north."

Missing autistic Bronx boy found in New York’s Time Square December 3, 2013 by Autism Daily Newscast, News In Brief New York, USA: 

A 12 year old boy described by the department of education as a high functioning autistic has been found wandering around Times Square,Manhattan New York after being reported missing after walking out of P.S. 188 on Cauldwell Avenue at around 10:30 a.m. Monday December 2. He was found after safely walking from Caldwell avenue to Times square, by the truancy task force, who were called to the scene and arrived at the school six minutes after the boy was reported missing.

NJ.com, December 9, 2013 - Missing autistic teenager found in Vineland

MILLVILLE — A missing autistic teenager was found in Vineland, according to authorities, after wandering from his Sunset Drive home. Robert Francesconi, 15, left his Millville residence Monday around 8:30 a.m., police said. Members of the Vineland Fire Department later found him near the intersection of Chestnut Avenue and Southeast Boulevard around 3 p.m. According to his parents, he is known to wander to high-traffic areas by foot in Millville and Vineland — visiting a different destination each time he has gone missing. 

Missing autistic boy found dead- NZ, Manawatu-Standard,  November 23, 2013

A missing 11-year-old autistic boy has been found dead in a swimming pool near his home, police have said. Police had been searching since about 3pm for William Archer who was last seen at a family address in North Street in the afternoon. Inspector Mike Coleman from central communications said the boy was dead when he was found about 11:15pm last night. Earlier police had said a lot of people had been looking for the boy since he was reported missing, including search and rescue staff, local police and his family.

4 comments:

Roger Kulp said...

It's nice we have increased awareness of wandering and eloping,probably because there is so much more autism than there used to be,but I would be curious how many studies have been done about it.Epecially if anybody had ever asked these children and adults who elope,if they were aware of what they were doing when they were wandering.The articles are always about children,funny isn't it?I'd be willing to bet most autistics who wander are like I was,where the wandering was associated with blackouts,where you are not aware of what you are doing,and have no memory of wandering,as was the case with me.

For me wandering was one of the most common behaviors before the cause of my autism was found.Much more common than head banging.I did get hit by cars,with only minor injuries,but being stopped by police,and taken into custody was much more common,especially as a teenager and adult,because most of the time when I was in a state of wandering,I was also unable to talk,or not fully verbal.

It's interesting.My wandering started a little before I turned four,just like this article says.About half of all autistics.Isn't that about the same percentage that have seizures?

Wandering is also associated with complex partial seizures.Being temporarily nonverbal,is another feature of this type of seizure.Before I started on leucovorin almost five years ago,it was a very common occurrence for me.After I started on the drug,the wandering and the head banging were the first things to go away.Self abuse is associated with frontal-temporal lobe seizures.

There are many causes of seizures,especially in autism,and whatever is causing the autism,should also be causing the seizures.In some children and adults,wandering may be the only outward sign of seizures.I really believe this needs to be investigated more as a cause of wandering.

Unknown said...

Roger, how did you come across what was causing your seizures and head banging? My girl head bangs a lot and has constant seizures. 2 grand mals just this past month. We truly believe she has frontal love damage. We are stuck and at a loss of what is causing her need to head bang and what's causing her seizures.

On the subject of wandering. We know this all too well also. shes wandered off a couple times. Two years ago she wandered out of the house while her mother was in the other room during a blizzard and shes allergic to the cold. luckily she just walked to our local convenience store and police found her right away. But she had to cross a busy street and the snow was bad. Just last month she had a meltdown head banging and slapping the walls and all at a doctors office and stormed out. Thinking she would calm down after the elevator but she bolted out the front doors dropping her iPad and jacket running straight into traffic. I dropped everything too and ran after to her. I caught up to her before the car hit her and she seemed frazzled and as I was turning around pulling her by her zip up hoodie she bolted again. I quickly ran to get our stuff before they were stolen and jumped in the car cuz I just knew I wouldn't catch her on foot. Drove around looking for her and just before I was about to call reinforcements I saw her walking near the woods completely unaware of what happened. Shits scary.

Anonymous said...

Good posting!
There are too many people the believe that if autistic children get the right therapy then they will become geniuses.
Wandering is a reality for many children and adults with autism.
I have heard of parents getting handicap signs for their cars because their children could hurt themselves in parking lots.

Roger Kulp said...

Unknown,I hope you read this.I was very lucky in a number of ways.I found a good DAN! doctor who did a very large group of tests.We found that I had very serious problems with folate deficiency.I was put on foilinic acid right away,and the head banging and wandering just stopped.My doctor and I figured out these behaviors were caused by seizures.There is a good bit in the medical literature about seizures and wandering.As well as a couple of studies linking seizures and self abuse in autism.I now have a diagnosis of something called cerebral folate deficiency syndrome.This is just one of the many underlying diseases that can cause seizures in autism,some metabolic,some immune or allergic,some caused by DNA/gene defects in methylation,like CFD is.The only way to find out is lab tests.Lots and lots of tests.

I first saw this doctor in 2009.Since then,the Autism Research Institute's DAN! program has been replaced with Dan Rossignol's MAPS.No one should accept autism as the only diagnosis,especially if there are regressions and medical problems.I don't know if there are any such doctors in Canada.I know there are few,if any.like this in the UK or Australia.