12/10/2009

One of 2000, each precious, each loved, each gone unnecessarily

A young person with autism wanders away and is lost. A frantic search is engaged in. This is no different than the hundreds of times a year where a young person without autism wanders off and is lost. The fear: no different. It isn’t. Parents of autistic children might like to think that their fear is greater, their burden heavier, but the truth is that kids, all kinds of kids, wander off, get lost. Some get snatched. Some die. Many come home, though; most come home. And the fear subsides, at least slightly. To pretend that our fear as parents of autistic children in that situation would be any greater is to demean those who go through that experience, regardless of their child’s diagnosis or lack-thereof. To use that very real fear as a bludgeon against those who view autism, its causes, its appropriate treatments, and its place in society differently than you do is heavy-handed and more than a bit narcissistic. To use the death of a young autistic boy who has wandered off to further your agenda is poor taste at best. It’s not surprising, though. And it forces the question of those who would not intrude, not cause more pain, raises the need to address it, to take that family's tragedy, and defend the attacks of those who have used that death so heavy-handedly, so insensitively.


Losing a child, both in the physical sense of not being able to locate the child, and in the final sense, death, is a parent’s worst fear. To have those twin fears realized is, no doubt, horrendous. And in the end, autism is irrelevant. When a child dies from a preventable, avoidable event, it doesn’t matter whether the child had a disability.

The precious child who lost his life today as a result of his two days of exposure was one of the 2000 children worldwide who “die every day as a result of an unintentional, or accidental injury.” While we pause to mourn for this child’s parents, for this child, let’s not forget the other 2000 families who lost children today from accidental and unintentional deaths.

It’s such a large number that it boggles the mind, and because we can better relate to this one boy and his family, we no doubt turn back to it. This, this we can all relate to. We can all pull out a remembrance of that time one of ours got out of our grasp or worse. Even Doherty effectively relates an experience. He then uses it as a bludgeon, but if we ignore that part of it for a moment, we can relate: one of our fears as parents is that our autistic child will get lost, will run away, get past our reach, get hurt, get lost. It haunts us.Many of us have our own stories about when our child got away from us. Not all of us then choose to take that incident, and having reflected on it, take that fear and use it, use the bludgeon on people who don't see autism as a scourge to be eradicated from a person.

One of the things that cannot be missed by even a casual observer to the online autism community/culture/loose conglomeration of competing interests relating to autism in some form or fashion is that there’s a great deal of hostility towards what are often considered enemy camps in the community. The curebies hate the NDs (they say so, ad nauseum): the NDs don’t want to help kids or people with autism. They want them to wallow in their self-injurious behavior and never get any better and die (Doherty does this kind of thing). Mitchell’s over at his blog engaging in his typical behavior: “Once again the ND line that autism does not kill anyone has been disproved by this innocent young child's untimely demise.”
Mitchell continues in his next paragraph: “So, the ND movement once again with their trying to stifle scientific research that could lead to a cure for autism does not seem to care about preventing tragedies such as these.” By not wanting a cure, people obviously want autistic people to die; that’s what he’s trying to insinuate. The problem is semantics, partially: cure is a loaded word and not the right one. It’s certainly an insensitive one. Elsewhere, he writes: "Very sad news, perhaps the ND crowd will think about this when they trivialize autism, but probably not." We can add tone deaf to his list. Knowing that he includes me in his ND crowd, I'd like to point out that I have never trivialized autism, never ignored the reality that there are a great many profoundly impaired. Always noted my bright boy will be by my side for the rest of my days. I don't notice any of my "ND" friends trivializing it, either.

I did a quick web search with variations on "autism doesn’t kill" and neurodiversity and the hits that come up are Mitchell saying that, but I didn’t come across anyone saying that autism isn’t associated with a higher mortality rate. I even found this page on Neurodiversity.com dealing with health and some of the articles and information dealing with mortality rates. It gets old, all this arguing that Mitchell does about what others says, and yet never bothering to back it up with actual real live quotes or links. And it also makes him look like he's making things up, you know?

What I have found, unfortunately, is that what science has been done shows that autism is linked with a higher mortality rate than the general population. Shavell, Strauss & Pickett (2001) examined mortality rates in people with autism compared to the general population and found that “that on average in this group the mortality was more than double that of the general population” (571). Shavell et al. found: “In the no or mild mental retardation group, deaths by seizures, nervous system dysfunction, drowning, and suffocation were all more than three times higher than would be expected in the general population. For the more severely retarded subjects, all categories of cause of death except cancer and “all other causes …” were more than three times higher.” (574).

They conclude: “Deaths due to drowning and epilepsy are common in the California autism population and deserve further forensic study as does the possibility of “acquired” LQT syndrome from various medications” (Shavell, et al., 575).

AutismSpeaks even picks up on these mortality studies and writes: “By noting that epilepsy and infectious disease may be the most common causes of death among individuals with ASD, professionals can direct their focus on preventing and/or treating these conditions. Furthermore, parents and caregivers should be aware that their loved ones with ASD are at increased risk of accidental deaths due to drowning and suffocation, particularly younger individuals.”
A new study is out (not able to get the full pdf yet) by Gillberg and associates (October 2009) that notes, at least in the abstract: “Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.”

Note what the biggest cause of death was in the Shavell study: epilepsy, an often co-morbid condition (about a third of the time) with autism. Of course, we pass that by fairly easily; epilepsy, although it kills more of our children is not the boogeyman that preventable, accidental deaths are. And it doesn’t have near the resonance, the meat that those accidental deaths provide the curebies (it should have more, really): Autism kills. That’s the argument that some folks in the autism community makes every time someone with autism dies or kills. It’s the autism and it got them killed or caused them to kill someone else. And it’s convincing. The child wandered away because he was autistic. I have three on the spectrum, and you can bet I keep my eye on them and I hold onto them tight because I know them, know where there’s risk and I take precautions.

Here’s the kicker, you don’t have to have autism to wander out into the elements and get lost. You don’t have to have autism to drown in a lake or a pool. And you don’t have to be autistic to kill someone. Focusing on the autism in these instances and blaming it ignores all those who suffer the same fates and autism was nowhere to be found. It truly trivializes.

How many children a year drown in the United States? According to the US Army Corps of Engineers, “about 200 children drown and several thousand others are treated in hospitals for submersion accidents, accidents which leave children with permanent brain damage and respiratory health problems.” Expand that past children, and you’re looking at about 6000 deaths a year.

What about diving accidents? “Never dive into lakes and rivers. Every year in diving accidents more than 8,000 people suffer paralyzing spinal cord injuries and another 5,000 die before they reach the hospital.”

Drowning and suffocation, at least according to the Shavell study, are about 3 times what the general population’s rate is. Does this mean that autism is the causal factor behind these kinds of deaths or that these deaths are high in actual number? The study that Shavell et al. conducted looked at over 13,000 subjects with autism, of which there were 202 deaths during the study. 11 of these were drowning over a period of time from 1983 to 1997. 11 autistic individuals drowned over a 14 year period in California. How many people overall drowned in California during that period? Well, how about from 1989-1998? In California there were 1,542 drownings, or 5.6% of unintentional injury deaths. Apparently, being non-autistic kills more people over all, though. Each death, each loss, painful to the families left behind.

Go beyond the drowning and back to the WHO’s report that 2000 children die each day from accidental and unintentional deaths.

Check this out:

“The report finds that the top five causes of injury deaths are:

1. Road crashes: They kill 260 000 children a year and injure about 10 million. They are the leading cause of death among 10-19 year olds and a leading cause of child disability.

2. Drowning: It kills more than 175 000 children a year. Every year, up to 3 million children survive a drowning incident. Due to brain damage in some survivors, non-fatal drowning has the highest average lifetime health and economic impact of any injury type.

3. Burns: Fire-related burns kill nearly 96 000 children a year and the death rate is eleven times higher in low- and middle-income countries than in high-income countries.

4. Falls: Nearly 47 000 children fall to their deaths every year, but hundreds of thousands more sustain less serious injuries from a fall.

5. Poisoning: More than 45 000 children die each year from unintended poisoning.”
While we pause to remember those with autism who have died far too young, let us also remember that this is not specific to those with autism. Let us also reflect that where there is adequate support and vigilance, accidental deaths decrease across populations.

Rather than railing at the NDs or the curebies or whatever division in the community gets you going, why not look into technologies that would help parents keep track of their autistic children who have a tendency to wander? Why not reach out and help families childproof their homes so that autistic children aren’t able to wander away unnoticed? Why not volunteer as a respite worker and give these families a needed break? Or go even further and do something, really do something like jypsy and her son, with their “training session to PEI's Ground Search and Rescue volunteers in January”?

Journal References:

Gillberg C, Billstedt E, Sundh V, Gillberg IC. (2007). Mortality in Autism: A Prospective Longitudinal Community-Based Study. Autism Dev Disord. 2009 Oct 17

Shavelle, R., Strauss, D., & Pickett, J. (2001). Causes of death in autism. Journal of Autism and Developmental Disorders, 31(6), 569-576. doi:10.1023/A:1013247011483.

6 comments:

kathleen said...

Really thought provoking Kim. The only time I have ever called 911 in my life, was when Sammy disappeared from my yard by digging himself out under a fence..I will never forget the extreme terror of those moments..He was picked up wandering down a busy country road about 1/4 of a mile from my house. I think about my neice(at the age of 5 ) who wandered away in a busy amusement park-and was missing for hours. My son has autism-my neice does not. My experience of sheer terror does not lesson my sisters.
Kids wander-some kids more than others. I find it interesting with all the incidents of kids wandering off, that there are-if the child happens to be autistic, it is somehow supposed to be more serious, more heartbreaking, more newsworthy.
I think that every parent worries about losing their kids, every parent worries about their own mortality,worries about their kids growing up, just plain worries. Every parent-no matter who their child happens to
be. It is part of the job description.

davidbrown said...

An addendum to the drowning stat: Quite a few drownings involve buckets. I've thought over it and come up with an idea for childproofing a bucket, but I don't know if I could patent it.

Corina Becker said...

Agree with you. A missing child is still a missing child, and the fear involved is horrifying for parents.

I do have to quote Turner & Kowalski though:

"Statements Of The Bleeding Obvious™

1.) Autism is not a disease. It is therefore obviously not deadly and for the same reasons does not have “symptoms”. I repeat, AUTISM IS NOT A DISEASE! To claim otherwise is completely unscientific."

That being said, it has been noticed on sites such as http://thiswayoflife.org/murder.html that our mortality rates are higher than the general population. The question they raise on This Way of Life is whether or not all autistic deaths are accidents, or were intentional.

However, as you've pointed out Kim, you don't have to be autistic to be murdered, or for a child to wander off and get lost. To see that autism is the CAUSE of these events is a misunderstanding, insensitive and completely ignores the fact that non-autistic people are perfectly capable of getting lost, attacked, and other tragedies.

Whether it happens to an autistic person or a non-autistic person, trauma and tragedy are still horrific.

davidbrown said...

Another thing I just thought off: About 3 years ago, an autistic woman named Robin Blasnek was killed in my neighborhood. She went out for a walk, and two guys drove by and shot her with a varmint gun. The pair had been at it for weeks, and she had been warned to go out that night.
Do we call this a death from autism?

KWombles said...

Corina, no argument from me on the disease front. I didn't get the sense from the journal articles that they were dealing with autism as a disease state, either.

Did I give the impression that I did? I did a search through the post and disease only comes up in conjunction with infectious disease being a larger cause of death for those in the study than accidental deaths. Or is it the other side, Doherty and Mitchell who claim that autism kills that that your portion of your comment is directed to?

KWombles said...

David, I'll be interested to see your response to Mitchell at his blog.

Gads, for those of you who don't read Mitchell, his response to David's comment, similar to the one here is, well, proof of his inconsistencies:

"No, Dave, I doubt she was nonverbal, James Delorey, clearly had problems with being nonverbal and elopement, autism certainly did cause this young boy's death. If it was someone who had enough control of their behavior to be able to consciously avoid going out, there is no comparison. If anyone has bad taste in making comparisons between the two it is you and Ms. Wombles. I don't know as much about you (assuming you are not a clay adams sockpuppet). But such tastelessness is certainly par for the course for Ms. Wombles.

December 10, 2009 9:32 PM"

"Tastelessness...par for the course"-- does that sound like me, really?