Autistic Boy Dead from Hypothermia

James Delorey went missing from his yard a week ago. The autistic boy followed the family dog, Chance, into the woods not long before a severe snow storm hit his Cape Breton town. The seven year old was wearing jeans and two shirts, with a light vest. He was missing two nights before searchers found him curled into a fetal position, covered in a light dusting of snow.

His funeral is to be held at Holy Redeemer Church in Whitney Pier, Nova Scotia Monday afternoon.

I am not ashamed to say that every time I think about this little boy I weep. I weep for the innocent life, ended too soon. And I weep tears of joy, because my own boy is safe at home with his family.

Like James, my son has autism. He has very limited communication skills, and if left to his own devices he would wander. When he was younger he would escape from the house or run away from us when we were out at the park. He has even run away from school on a handful of occasions.

In our family, we know what it is to live always looking over your shoulder. Counting heads not only when we're in crowded places, but even once we get home, is a normal part of everyday life.

A neighbour said she didn't often see James playing outside like one might expect of a boy his age. "His mother never let him wander," said Melanie Sampson. "She could never leave him out of her sight, God love her."

It is the nightmare of every parent that one of their children will leave home one day and come to some sort of harm. For the parents of many autistic children there is no relief from this nightmare at home, nor even when the child goes to sleep at night. Most times necessity and the support of loved ones make it possible to do the impossible, and keep a round the clock watch on such a child. But even with superhuman efforts, "most times" isn't "always."

What happened to James Delorey could happen to any child, but having autism can make a child more vulnerable for several reasons.

Dangers of Autism: Elopement

People with cognitive difficulties often tend to wander. This can happen to children and adults who have a pervasive developmental disorder like autism. It can also be a problem for epileptics recovering from a recent seizure or for diabetics whose blood sugar levels are not within the normal range, or for people who have Alzheimer's disease, among others.

A person who wanders off may do so because they forget where they are or what they wanted to do. A video called "How to Boil Water the EASY Way," by Amanda Baggs is a fantastic demonstration of how even the most simple of tasks can be incredibly complicated for some people. If you've ever had what you jokingly referred to as a "senior moment," you might be able to put yourself in Amanda's shoes.

A person who wanders may resent the restrictions placed on them by their family or care givers. Unfortunately, this can become a vicious circle in which willfully eloping leads to more concerns and less trust, and therefore even more restrictions.

Even when parents, school or residence staff or other care givers realize the person ran off because they felt penned in, it is often difficult to come to a compromise that allows for the person's sense of self-governance and independence without compromising their safety. This is especially so for individuals who have a diminished sense of danger.

Autism: Fearing No Danger

It is common for people with autism to have difficulty sorting out the different stimuli they encounter, or interpreting non-verbal cues. The first time autism was explained to me, I was told that it was like being bombarded with too much information and not knowing how to sort it all out. Some therapies designed to help people with autism and similar issues, involve helping them learn what they need to attend to, and what belongs in the background. An autistic person may not be able to tell the difference between what a friend sitting next to them is saying, and the dialogue on a TV in the next room.

An autistic person like my son may have trouble discerning the difference between games in which they run and are chased, and a much more dangerous situation in which running away could put them at risk. They may not perceive oncoming traffic, or if they do they may not fear being hit by a car. They may climb to great heights without realizing how far off the ground they are, or what might happen if they fell.

Dangers of Autism: Planning for the Unexpected

Autistic people like to live by established routines. Think back to Dustin Hoffman's character in Rainman. He was used to certain meals on certain days, and felt awkward just choosing anything from the menu when he was travelling with his brother. He also wanted to have familiar clothes - most particularly a certain kind of underwear, bought at a certain store. Routines and rituals make life more predictable, and can be very comforting to a person with autism. The problem is, they often can't cope well with the unexpected.

An autistic child can have a meltdown at school because the pathway from his classroom to the schoolyard is blocked due to maintenance, or he can refuse to put on a new winter jacket because it's the "wrong" colour. Unless the child is prepared for the change, and preferably has had an opportunity to practice for it in some way, a very small change in routine can be catastrophic. It was for Christina Saint-Vil in March 2008. Her mother left her at the bus stop one morning, believing she was able to wait for the bus alone. But when the bus didn't come Christina didn't know what to do or where to go. She wandered the streets all day and all night, until she was discovered the next morning. Apparently she had either not been able to find her way home, or had not thought to go there. She had been on her way to school, and presumably felt the need to complete that action.

Dangers of Autism: Decreased Awareness of Pain or Cold

Many children with autism have a high threshold for pain, and even when they do feel hurt they may not be able to tell someone what is wrong. Some of these children don't cry out when they hurt, or they simply don't notice an injury when it occurs. My son was uncomfortable wearing clothes for roughly the first five or six years of his life. He would run around in just his underwear at home, and even in winter he wouldn't realize he needed to put on warm clothes to go outside. He wouldn't complain if his hands or ears got cold, and would fight to remove mittens and hats in sub-zero temperatures.

Dr. Brian Norman, of the pediatric intensive care unit at the IWK Health Centre where James Delorey was treated after he was found, described how people beginning to suffer hypothermia have a decreased awareness of the danger they are in. Any person lost in the woods is at risk of falling into this situation, especially a child, according to Dr. Norman. "They lose track of time, they lose track of their feelings, that they're getting cold," he said. "They go into a state where they probably don't feel anything." ("Losing a child 'always very difficult' for intensive care staff")

A child who already has difficulty orienting himself in place or time, a child who cannot plan for the unexpected or and who has trouble sensing cold, pain or danger, is at even greater risk.

Dangers of Autism: Lack of Communication and Lack of Understanding

When any child is lost, it is imperative that he is found promptly. For a child with an autism spectrum disorder, the need is even more urgent because he cannot be counted on to sense danger or to take steps to help loved ones find him. A teen with Asperger syndrome, often considered a high functioning form of autism, was lost for eleven days in the New York subway in October, after an incident at school. He didn't ask for help, but was able to respond when a transit officer initiated the conversation by asking if he was the boy who was missing.

This lack of communication ability is common in people with autism spectrum disorders. Some people with autism are completely non-verbal, and therefore not able to call out to searchers if they are lost or hurt. Some are quite verbal, but are not able to reach out to other people.

Others may have bizarre speech patterns that consist of repeating what someone says to them (echolalia) or of quoting lines from a favourite movie that they connect with a given situation or emotion. My son has a tendency to do this when he is upset. Sean Penn's character in I Am Sam did this when asked in court to talk about his relationship with his daughter. He quoted from a particularly moving scene in Kramer vs Kramer that described how he felt about his daughter. His quotation was misunderstood by the judge as a lack of mental competence, rather than as an indirect or symbolic communication.

When young Francisco Hernandez Jr. went missing in the subway his mother went to police. They dismissed her initial pleas for help and treated him as a runaway. After he had been missing for five days, police from the missing persons unit visited Francisco's mother to offer her advice on where to search for him. Feeling the police were not doing enough to search for their child, Francisco's parents took matters into their own hands by making posters and contacting the media. His mother, a Mexican citizen, also went to the Mexican consulate for help.

When later questioned about the way police handled the case, Police Commissioner Ray Kelly said everyone had followed procedure. Police "waited for a few days, because obviously (the missing persons unit) would be overwhelmed if we took every report of a young teenager not home," was his comment.

Addressing the Dangers of Autism

Some ways we can help protect children with autism:

* Universal toddler screening for autism, and referral to early intensive behavioural intervention even before diagnosis is confirmed, as per recommendations from the American Academy of Pediatrics, improves overall outcomes for children with autism. See "Autism Needs a Head Start" for details that may help one of your friends or family members.

* Assistance dogs are now available for autism, although today there are long waits and most agencies will only supply dogs to young children. Dogs can be trained to prevent children from engaging in self-injurious behaviour including walking into oncoming traffic or wandering away from home.

* Autistic people who wander may also benefit from a tracking device, such as those offered by Project Lifesaver. This non-profit agency provides equipment and training that greatly reduces the time and personnel required to find a person with autism, Alzheimer's or other special needs, and return them safely home. Services like this need to be offered to a broader range of locations, and the devices must updated regularly to keep up with the current technology as well as the needs of the clientele.

* Many communities are now offering special training to their first responders, and are also developing programs that help to open the lines of communications between people with autism and first responders before a crisis arises. Dennis Debbaudt specializes in training police and other emergency personnel to be more sensitive to the special needs of autistic individuals, and helps them to do their jobs more effectively when autistic people are concerned.

Kyla Matton is a freelance writer, homeschooler, and the mother of a pre-teen son who has severe autism. She was first introduced to interventions for special needs children when she was about his age, and has been involved in assisting special populations ever since.

Sources:

"James Delorey's funeral set for Monday" Cape Breton Post

"James Delorey, 7, remembered as 'nice, little boy' after dying of hypothermia" Michael Macdonald and Alison Auld (Canadian Press)

"Losing a child 'always very difficult' for intensive care staff" Aly Thomson (Metro News)

"Missing boy spent 11 days wandering New York subways" Jamie Guzzardo and Jesse Solomon (CNN)