Monday, August 21, 2006

DEATH BY AUTISM

We hear far too many news stories of autistic children who die. And those deaths are often accompanied by expressions of anger. We heard the anger when a child died as the result of what appears to have been gross medical malpractice during what should have been an unremarkable chelation procedure. We’ve heard the anger more recently when an autistic child was killed by her own mother. Sometimes the anger is justified; sometimes it isn’t. It’s not my intention to raise those arguments again. Rather, I want to say something about a phrase I’ve heard whenever we hear the anger: “this child died because he/she was autistic.”

Sometimes the connection between the autism is easily seen; other times it is more indirect. But it seems to me that drawing a connection between autism and a child’s death should not be dependent upon intervention by a doctor or parent.

A story appeared in the Macon Telegraph last week, relating the sad news that Jabriel Eason, an autistic six year-old, drowned. His mother needed an afternoon nap, and she took precautions she thought would keep her son out of danger. She locked the door, using a bolt that was installed above where Jabriel could reach it, and pushed a sofa against the door. Those precautions didn’t stop Jabriel, and he was not seen again until the next morning when his body was found in a nearby lake.

Jabriel Eason died because he was autistic.

The discussions in Macon, Georgia following the drowning have centered on whether property owners should be compelled to erect fences around open bodies of water. That response is way too simplistic. To be sure, many autistic children are “runners,” but not all. And many autistic children seem to have a fascination for water, but not all do.

There is an obligation on society’s part to understand autism, and to make necessary accommodations for autistic individuals. That is, society as a whole must do what it can to make the world safe for autistics.

Parents of autistic children, however, have a corresponding obligation. We must fiind ways to communicate to our children the dangers that surround them, and we must try to remove any barriers that stand in the way of their understanding and recognizing those dangers. That is, we must do what we can to make our children safe for the world.

The dangers and obstacles that face our children are different for each individual child, just as the nature of autism itself is different for each child. Every week, we seem to hear another story of autistic individuals ⎯ children and adults ⎯ who become victims of the world around them. Sometimes those stories have happy endings, but often they do not. Each time I read one of the stories that ended badly, it haunts me for days thereafter. I don’t want my child to be a victim.

I cannot judge Jabriel’s family; I have no doubt they loved the child and did the best they could to safeguard him. That they did not succeed is a lesson for us all.

Jabriel Eason died because he was autistic.

15 Comments:

Blogger ballastexistenz said...

I would believe this, if I believed that the many more boys than girls who get killed in pedestrian traffic accidents (i.e. running out into the street and getting hit by a car, which happens more to boys than girls) were killed "because they were boys". Or that all the children who drown in swimming pools (more often than adults, it's children) were killed "because they were children". Etc.

8/21/06, 10:07 AM  
Blogger mumkeepingsane said...

And here I was thinking I *shouldn't* nap while watching my autistic son. Hmmmmm...

8/21/06, 12:23 PM  
Blogger Wade Rankin said...

mum,

I can only hope that you did not interpret this post as condoning taking indiscriminate naps while watching one's autistic child (or any child for that matter). I cannot condemn this particular mother, however, without knowing why she felt the need to nap. Was she ill? Does she work the night shift to help support the family? Was she up all night with a sick child?

My point is, there are indeed a number of explanations that stem from gross irresponsibility, but there are an equal number of more innocent explanations. This mother did not place a plastic bag over her son's head; she took a nap. And while she slept, her son acted upon the natural-curiosity-untempered-by-any-sense-of-danger that is part of the make up for quite a few autistic children.

I have read similar stories, and heard directly from parents about autistic children eloping in the middle of the night. Should we blame those parents for wanting to sleep in the hours between midnight and dawn?

As I said, there are lessons to be learned from this sad tale. One lesson is that we cannot take the safety of our children for granted, thinking it is safe to take a nap (however much it may be needed) simply because we use a lock on the door. On that, you and I seem to agree. I believe, however, that we also need to look at the bigger picture, and address how we help our children find their place in a hostile world. I don't suggest that there's an easy answer to that, nor do I suggest that the answer for my child is right for yours. It is just my opinion, but focusing on one mother's behavior (and her negligence may indeed be blameworthy) rather than the child's condition is of limited value in addressing that issue. It's too easy to say that our children will be fine if only we can stay awake.

8/21/06, 3:18 PM  
Blogger mumkeepingsane said...

Of course our children won't be fine if only we stay awake.

I appologize for my flippant comment. It annoyed me, especially after all the days AND nights that I've spent awake watching my autistic son, that one could say so casually that she needed a nap. Don't we all! But I do appologize because it wasn't a constructive comment.

I agree with you that we need to help our children find a place in this hostile world. And of course some 'autistic traits' will put our children at an increased risk for harm or death. My son is obsessed with water and it scares me to no end. I suppose in the end we all need to do whatever we can to make sure our children don't, as you say, die because they are autistic.

Can I also say how much I've enjoyed reading your blog. I mentioned to a fellow blogger that I'd like to read some blogs that come from different points of view and was referred to yours. Even though we disagree on some key points I find your posting informative and relatively sane.

8/21/06, 4:02 PM  
Blogger Ian Parker said...

Hi Amanda,

Are you saying that the average autistic child is as aware of their environment and has an equal sense of danger and risk as the average NT child?

8/21/06, 4:42 PM  
Blogger Wade Rankin said...

Thanks for coming back, mum. I appreciate your willingness to engage in a civil discussion; as Amanda and Ian are demonstrating above like they have on other occasions here, there is a value to critically examining our differences. I am also pleased with your assessment of my relative sanity.

I should point out that the "needed an afternoon nap" reference was my own interpretation of the facts (something I am all-too-often guilty of). As my later comment indicates, I don't know all of the circumstances of the nap.

I hope you feel welcome to leave comments in the future.

8/21/06, 4:46 PM  
Anonymous Shawn said...

These stories also haunt me for days.

However, I wonder if Jabriel did die because he was autistic. About two years ago, two children in my town drowned (in separate incidents) after they wandered off and found a stream or retention pond. Neither was autistic although both were younger than Jabriel. Unfortunately, stories like this are in the news all the time. Kids and water are a dangerous combination.

One of my sons has an extremely under-developed sense of danger although it's not a big issue with my other son, both of whom are on the spectrum. One had some close calls that still raise my heart rate when I think of them. For me the lessons of each story depend on how much the situation could apply to my own children. Sometimes the events connect because of similarities related to autism. Sometimes they don't.

The biggest danger is not trying to learn from the stories, whatever the lesson.

8/21/06, 7:16 PM  
Blogger ballastexistenz said...

Ian: Most autistic children are more aware of their environments than NT children.

Some autistic people are oblivious to some dangers. Some autistic people, like my brother, are hyper-cautious in both dangerous and non-dangerous situations. I'm not sure if it can be generalized the way you'd imagine.

(I'm one of those auties who played in traffic because I liked the way the lights looked, balanced precariously on anything and everything, and nearly killed myself riding a bike down the wrong hill, so count me in the more risk-taking category.)

But, as I said, it's boys more often killed in this way than girls, this has been statistically studied. And children more often than adults. So, even if autistic people are in more danger than NTs (and I'm not sure whether that's true or not, the extremes might balance out and I haven't seen any studies on it), how can we say "autism killed them" without saying "boyhood" killed these boys, and "childhood" killed children?

While I'm somewhat of a risk-taker by nature somehow, my non-autistic brother was the biggest risk-taker in the family growing up. Set off model rockets inside the house. Shot guns at pillows in the backyard. Got into the liquor cabinet. Did various things that I probably shouldn't repeat in public. Could not be left unsupervised without getting himself into some kind of trouble, starting in childhood and continuing to when he was nearing adulthood. Miraculously didn't kill himself or anyone else. (I don't want to paint a negative picture of him -- he's a really great guy, just mischievous as hell growing up.) I have heard stories about my non-autistic relatives shooting each other in the butt growing up.

My point is, are people like my non-autistic brother "killed by boyhood" when they die as boys, since it's more boys than girls who, for instance, run into traffic and get killed? If I'd died doing something reckless, would I have been "killed by autism," while my non-autistic brother would not have been "killed by boyhood" (or whatever) even if he'd done something twice as reckless (and he often did)? And while my autistic brother just plain was the polar opposite of reckless?

If we're going to say "killed by autism", then we're also going to have to say "killed by ______" whenever a kind of death is more common in "_______" category. Which does include boys, and also children.

8/21/06, 8:04 PM  
Blogger Ian Parker said...

Hi Amanda,

You wrote:

“If we're going to say "killed by autism", then we're also going to have to say "killed by ______" whenever a kind of death is more common in "_______" category. Which does include boys, and also children.”

For what it’s worth, I would be inclined to say exactly that, e.g. boys are killed because of ‘boyhood’, or children are killed because of ‘childhood’. More boys are born than girls (I forget the exact ratio, but it exists), but by adulthood there are more females than males. Two major reasons for the reversal are illness and death by accident. And death by accident is related to risk taking and inexperience, both facets of ‘childhood’ and especially ‘boyhood’ that diminish, in most cases (unfortunately not all), with age and experience.

I also recognize that hidden within averages are ranges. The fastest male runner is faster than the fastest female runner, and on average, men are faster runners than women. Having said that, the fastest female runner would easily leave me in the dust on a track. The same average vs. range overlaps probably apply in most comparisons between men and women, and probably also apply in comparisons of ASD and NT children in many categories, in one or the other group’s favor.

Having said that, within the population of children with ASD there are clearly those who do not either perceive danger or risk in all cases as well as the average, and there are those who either do not understand instructions or for whatever reason are unable or unwilling to follow them, potentially at great personal cost. My daughter likes water, and is very attracted to my Outlaw’s swimming pool. I can tell her repeatedly not to go in the pool, but when she gets near the edge she looks like she’s trying to step in unless prevented from doing so. Either she does not understand or she is ignoring my instructions. Could an NT child behave similarly? Definitely. But at the same age for most (not all) NT children I could assume a level of language competency to make an informed judgment as to why.

You say that “Most autistic children are more aware of their environments than NT children.” Perhaps that is true (I’m not disputing this, but rather, I’m unsure if this is not another overlapping ranges question). But given that more than a few autistic children have communications and/or motor planning issues, and probably less experience, awareness of environment alone may not always be enough to save a life. I’m sure my daughter is aware of the pool – after all, she wants to go in it. I’m not sure that she understands the danger or can accurately measure the risk. (Yes, I’m prepared to accept blame for her lack of experience, although I have taken her in the pool.) Nor am I sure that telling her of the danger will reduce her chances of stepping into it if she is not physically prevented from doing so, i.e. words and my proximity are not enough. In this case I would say that the risk is due to her autism.

Are all cases of accidental deaths of autistic children due to their autism? I would say of course not. But I would also say in more than a few cases that a lack of experience and/or inability to correctly assess risk could be significant issues, and that to the extent that these issues are due to autism then autism itself is a contributing factor. In this case it sounds to me, admittedly from a distance and with incomplete knowledge of the situation, that autism was a factor in Jabriel Eason’s death. That does not mean that autism will be a factor in the next accidental death of an autistic child. Nor does it mean that it will not.

8/21/06, 11:10 PM  
Blogger Kristina Chew said...

If all that one were to know about autism was from the stories in the news----about deaths, accidents, missing children----all that life with autism would seem to be would be sadness and desperation. I've been thinking about how to respond to this post for a few days. Reading about these kinds of tragedies, the first thing that can come to mind is "that won't happen to us"-----but what I next feel is that, when one autistic child, one autistic person dies, all of us who live "autism every day" lose something.

8/24/06, 5:59 PM  
Blogger Joseph said...

Jason died because there was a pond and he went into the pond and couldn't swim. Beyond that, you have to start to make generalizations, such as 'boys get in trouble' or 'autistics are unphased by danger'. Very young NT children are also in danger of such accidents. But you'll seldom hear people say that a child died because 'he was a toddler'. It's, of course, possible to construct it that way. And that's how childhood is medicalized. There are people who argue that ADHD is a disorder precisely by citing figures about how much more likely ADHD children are to get in accidents than non-ADHD children. If such arguments were valid, you could medicalize the male gender or the black race on the same basis, for example.

8/28/06, 11:06 PM  
Anonymous Anonymous said...

Wow, whaddya know. I actually agree with Joseph!

Although I also acknowledge the possibility that if the child had NOT been autistic... there's a chance he would not have wandered off. The issue here is generalizing a specific circumstance because a kid was autistic.

When i come home from work... sometimes I have to nap (on the couch). Usually that's not a problem. My daughter takes running dives on top of me! (I don't mind, despite the physical pain that sometimes ensues! :-) But the point is... I can completely understand why a mom or dad needs to nap while his child is fully awake. Usually we try to time our naps when our daughter takes one. While one can argue negligence when a lack of oversight leads to disaster... I will not judge the parent in this instance.

I just heard about another death where an autistic child was locked in a closet for two days while his foster parents attended a social outing. Nothing could enrage me more. I cannot help thinking about how horrifying that child's last moments were. No food, no water... limited air. Dark and confining...

If someone did that to my daughter, I can't tell you what I would do.

The people who did that were monsters. In a way, it's worse than the McCarron murder, but I don't want to minimize the crime against Katie McCarron.

Erik

8/30/06, 7:28 AM  
Anonymous Anonymous said...

Excuse me, but with regards to Mr. Eason's death...

Plenty of kids drown. If you take the autism part of it out of the equation here, you're left with a story that's oft repeated... most of the time with neurotypical children.

Just because kids with autism *also* happen to drown occasionally, doesn't mean that drowning is a risk intrinsic to autism, or that a drowning victim that happened to have autism died "because he/she was autistic".

Just the 2c of an ASD that didn't suffer any of the injuries typical of his peers growing up.

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5/28/09, 3:03 AM  
Anonymous Anonymous said...

You don't get a break with an autistic kid it is hard to get sleep. I can understand why she could have been tired. What went wrong is she thought she safe proofed the house when she really didn't. I would never fall asleep with the child awake unless I had to, and even then people need to realize that no matter what you do the child is not going to understand. The connections in the brain are not working properly. As much as you don't want to be caved into your home it is the only way to try to keep your kid safe. A child with autism will make you realize materialism doesn't matter. You need to nail thin wood to cover and block windows, and buy locks for doors that you can connect a padlock to. This has worked for us, and my son has broken a window before we put the wood over it. After doing both of these we have not had any problems since. Sleeping has been much easier. I hope other parents read this before another child gets out of their home. It is very sad to know this is happening nobody should have to go through this.

9/2/12, 3:55 AM  

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