Selective Outrage

While driving in to work today I heard a story on the radio regarding a special needs children's orphanage in Iraq that was recently raided. According to the story, a routine military patrol in Baghdad happened to look over a wall, and saw the following:

...Inside the building, a government-run orphanage for special needs children, the soldiers found emaciated little bodies tied to the cribs, CBS News reports exclusively. They had been kept this way for more than a month, according to the soldiers called in to rescue the dying boys. ...

..."The kids were tied up, naked, covered in their own waste — feces — and there were three people that were cooking themselves food, but nothing for the kids," Lt. Stephen Duperre said. ...

The tone of the article was one of shock and dismay. As if, in a country where its former leader would use nerve gas to kill his own citizens for the crime of being from a different tribe than he, we should be surprised that special needs kids are abused and left to die.

But, my overarching reaction was something more akin to "Hey, where've you been, CBS? You don't have to go to Iraq to see abuse of those who are in institutions." Perhaps you should look a little bit closer to home. For starters, you could look at how UNICEF has cataloged systemic abuse of children in institutions all across the world, including in the West.

One could also go to this web site to see stories from former patients in mental institutions in the US. Another place closer to home would be to read Amanda Baggs' list of ways institutionalized people are abused in institutions. Finally, abuse of autistics both in and out of institutions is cataloged by Joel Smith here.

I guess the bottom line is while I think people should be outraged at the treatment that these children were/weren't receiving, I think that CBS missed an opportunity (responsibility?) to also shed a little light on a lot of abuse that happens a lot closer to home, here in the US.

Out of the Mouths of Babes...

photo credit- Shaun.numb

So, Liz was walking thru the local mall the other day, and they passed the central fountain (which has always been a big hit with Buddy Boy since he was at least 6 months old-even after sitting there watching it for 30 minutes he would scream when we left it). On this day the fountain was spewing pink water (which was just fine with Sweet Pea, as she loves anything pink).

The pink water was a marketing thing for the Susan G. Komen race for the cure event that is coming to our town soon. In explaining the event to Buddy Boy, she explained that everyone doesn't always run, and that many walk, much like the "Autism Walk" that we have taken part in in the past. Well Buddy Boy put together the notions of "curing breast cancer" and "autism walk" together in his brain right away, and even though Liz never said anything about curing autism, he said,

"I don't want to be cured. I'm not sick."

He then seemed to infer that the Autism Walk money might be used to "cure" autism, because he stated,

"If we go on the Autism Walk again, we can just take their money. I am not sick."

Later, when Liz was in the car with the kids, listening to the same National Public Radio (NPR) story on autism that Autism Diva was, one of the participants referred to autism as a disease. Immediately Buddy Boy piped up from the back seat,

"It's not a disease!"

Liz agreed, saying that autism is actually a disorder, to which Buddy Boy responded,

"It's not a disorder, either! Autism makes me special!"

To which Liz could only agree.

Now I know that what a 7 year old puts forth as his opinion cannot be reliably said to be his opinion alone. Certainly a lot of what he says are just things he's heard. But while we certainly try to keep a positive spin on autism, we don't usually discuss autism politics or controversies in front of him (we're much more focused on discussing things like the proper channeling of aggression). So when I heard this I was glad that Buddy Boy had what I considered a very healthy view of things, and seemed to be integrating his own feelings on the subject with things he's heard from us and others. On top of that, all I can say is,

"That's my boy!"

An Eye on School Safety

I am no fan of the rapidly rising rate of the use of closed circuit television cameras (CCTV cams) in public places for surveillance purposes. I agree with the ACLU that they are intrusive and don't generally accomplish what we are told that they will. I think that they contribute to the formation of a "nanny state" where those in power can abuse information gleaned from them. Not that I personally do any dastardly deeds in public, but I just don't want to be watched whenever I am walking around in public.

Great Britain has been a leader in installing CCTV cams in public places. Although still a bit controversial, for the most part citizens across the pond in the UK have embraced the concept of having public spaces actively surveilled by cameras.

Here in the US, what once was the province of only a few places (such as at bank teller stations) has now mushroomed not only in private establishments, but also in public places. This is probably due to many factors. One, certainly, is the decreasing cost of such video equipment. For about $500, one can get a camera and software to record fairly good quality video on your computer while you're away. Another reason is increased public uneasiness following the 9/11 attacks in 2001. Video surveillance is sold to the public as a preventive measure against such attacks occurring again. Yet another reason is the role that video surveillance cameras have played in assisting in solving crime. Although there is not good data to back it up, there are an increasing number of abducted or attacked teens (and others) where video turns up on the news shows within 24 hours. Whether or not the video helps solve the crime, a voyeuristic public wants to see those same frames of video over and over and over again.

But there's another side of video cameras that's not altogether bad at all. The Rodney King case in California would not have gotten the press it did without the compelling video of King being beaten in the streets by the LA police. The rise of cameras being integrated into cell phones has also allowed us an insight into events that we might not have had otherwise. Michael Richards' outrageous tirade at a comedy club might have been a story buried in the paper for one day, but for the video that was caught on a cell phone which allowed Richards to hang himself with his own words.


Closer to the theme of this post, cell phone videos have shown teachers behaving badly, when they didn't know they were being recorded.

But what does any of this have to do with schools (and special ed classrooms in particular)? A lot, I think. I am sure that I in the minority opinion (especially if one surveyed teachers), but I think it would be an excellent idea to install passive video surveillance in all school classrooms and other areas where students gathered ("quiet rooms", resource rooms, gymnasiums, playgrounds, lunchrooms, etc.). By passive video surveillance, I mean that the video would be continuously recorded onto tape or hard drive, and be available for retrieval for a fixed period of time (say, 60-90 days). After that time it would be erased. Now, like the ACLU, I believe that such recordings open up the possibility for abuse, so I would have strict rules for how they could be used.

First of all, no one would view the tapes unless there was an "incident" that had occurred. Anytime any student got "written up" for a disciplinary infraction, or anytime anyone (police, parents, students, teachers) made any allegations of possible wrongdoings, a neutral investigator would be appointed (someone outside of the school) and all of the recorded material from that school for the day in question would be stored until the incident could be settled. The recordings would be availabe for all interested parties to watch. It would be the law that this was legal (so that the schools couldn't hide behind some false claim of privacy of other students).

Why do I think this is a good idea? Well, read Kristina Chew's blog entry from today, where 4 educators in a New York school are being charged with multiple cases of abusing disabled children. In a different context, Amanda Baggs has described what it's like to be institutionalized in what is considered a "good" situation.

Having such a system in place (passive surveillance kept confidential unless there was a dispute) would serve a number of different purposes. First of all, it would go a long way towards levelling the playing field in what is always a very unequal power relationship. School teachers and administrators wield a considerable amount of control and power over their students, and having a neutral observer in the classroom would be essential in many cases of showing what really occurred in a given situation. Secondly, when there is a pattern of neglect and not addressing educational goals that have been laid out and agreed to (in an IEP), video can be reviewed to see if this is actually the case or not.

Many (especially teachers) will recoil at this suggestion. But it's not as if this would be the first place where recordings of events when someone was working would take place. As I stated, in businesses all over, the employees as well as the customers are under surveillance. Police officers have become accustomed to having video cameras in their cars recording routine (and non-routine) traffic stops and car chases. Many officers have been glad to have these recordings to back their side of the story up when they have been accused. Emergency rooms have had such surveillance, and so have some operating rooms (theatres). There would certainly be a psychological period of adjustment on the part of teachers, but with the safeguards I have included, I do not think that this would be too great.

And we might just be able to weed out several bad apples in the process.

In Praise of Peers

In the world of autism, we often look to a small army of people with titles and training for assistance-SLP's, PT's, OT's, social workers, psychiatrists, teachers, autism specialists, aides, etc. All of these people are great, and I'm glad that they exist. They all have helped Buddy Boy at one time or another.

But something that happened today reminded me of a whole other group of people that are often overlooked, but no less important. Peers. Sometimes just as much assistance (if not more) is provided by occasional individuals with no training, no title, and no pay.

We had a great day today. I was off work. The whole family went to a local cave where noted outlaw Jesse James once holed up. The kids loved walking thru the cave and looking at the stalagtites, stalagmites, and the underground river (although Sweet Pea complained the 40 minutes or so tour was "too long"). Both kids got a souvenir (Sweet Pea got a little unicorn, and Buddy Boy got a flashlight that could project pictures of dinosaurs on the walls). After going out to lunch we still had some time left, so I dropped Liz off and took the kids to our local park.

Who should we run into but Anna, who dedicated readers may remember as the blond girl from Kindergarten who befriended Buddy Boy almost two years ago now. When Buddy Boy was on the fringes and not participating at all, she would approach him and try to talk him into joining the group. She was low key, patient, and persistent. When other typical kids in his class were turned off by his either seeming to ignore them or shrieking at them, she continued to interact with him. And she ended up being one of the better things to happen to Buddy Boy during an otherwise difficult year.

Buddy Boy never got together with Anna outside of school, and when he went to two different schools this past year during first grade, one of our regrets was the loss of Anna as a friendly face for him to see in school.

When we got to the park today Buddy Boy first attempted to climb a crabapple tree that he sometimes likes to climb. Then he ran over to the playground equipment. I was assisting Sweet Pea climb the tree (if Buddy Boy does something, she just has to follow suit). It was then that I noticed the two of them talking. I thought it was Anna from across the playground, but I had only seen her a couple of times, and none recently. They were talking at the top of one of the slides, and I heard Buddy Boy shrieking, which he sometimes does when he gets excited. Usually this is somewhat frightening to most kids, but when this girl didn't run off it confirmed to me that it must have been her.

He followed her and they played on a couple of pieces of equipment. Then Sweet Pea insisted that she wanted to go over and play with them. Sweet Pea went over and quickly convinced them to play "Troll". Playing "Troll" at the playground involves yours truly being the troll who chases the other players and tries to catch and eat them. The troll chases but usually doesn't catch them, except maybe to tag them. Twenty minutes of this left me fairly worn out, but of course the kids could have gone on all afternoon. The kids continued to play a little more after that, then we had to get going.

It was great that Anna remembered Buddy Boy, and even better that she still accepted him as he was. There was a part of me that was afraid that she would have "matured" and been socialized in the last year and a half to reject those who are out of the ordinary. I'm not sure what it was that made her reach out to Buddy Boy when they were in school together, but I'm really happy she did. Sometimes I think it's the non-structured, spontaneous interactions that help Buddy Boy the most.

Here's hoping this is the start of a great Summer.

----------------------------------------------

Random funny thing overheard today (during minor spat between Buddy Boy and Sweet Pea):

"You're lucky that I'm not the kind of brother that would throw his sister into an active volcano that was still filling up with magma."

Censorship?

photo credit- Isaac Mao

For followers of the blogs on the Autism Hub, one would have to have been asleep over the last several days to have missed it's mini identity crisis. Larry Arnold touched things off with his Animal Farm posting, in which he made the good point that autism advocacy should be led by autistics (although I am hard pressed to see where anyone on the Hub has suggested otherwise). He also seemed to want to rail against non-autistic adults of autistic children, seemingly for the twin crimes of drawing attention away from autistic adults, as well as hijacking the neurodiversity movement.

My first reaction was "What?", while my next reaction was more like, "WTF?" I mean, I'm accustomed to getting attacked for offending believers in "cures" for autism, but was initially blindsided by reading this in a space I consider "friendly" territory. But I figured that this was just a passing thing, and as I have followed Arnold's blog for some time, and have gained much from reading his insights, didn't think too much about it.

Then this mini crisis continued when Larry posted another time, and Kevin Leitch, having the integrity of the hub questioned, did some public soul searching on his blog.

I've held off on commenting on any of these postings, though I started a few times and then stopped. On the one hand Larry seems to have raised a few legitimate points, namely that autistics should be the ones setting the agenda for what they think is necessary, and that autistics should be in positions of power in organizations that purport to represent them.

On the other hand, I felt a little like Larry opened the door to the family room, threw in a grenade, then quickly exited. I don't mind people forcefully arguing their views, even when it makes me uncomfortable. But I felt that when Larry started making accusations regarding all the bad things parents of autistics on the Hub had been doing, but then not backing it up with specifics, that that was rather unfair. How was one supposed to respond? I'm sorry for all the bad things I've done, even though I don't really know that I'm part of the evil cabal you're referring to?

Larry seemed to repeat a couple times that more attention was being paid not only to issues he felt irrelevant (mercury poisoning theory), but also people he felt irrelevant (non-autistic parents). I'm not sure how this was determined (response counts, number of posts, some web traffic meter?).

So I started thinking. Well, what's the solution to this? Should Kevin limit the number or ratio of non-autistics he lets on the Hub? Should some of us get the hook for not being relevant enough? Do I, as a non-autistic, have to submit all of my posts to the central committee for clearance before I hit the publish button?

After thinking about this for a couple of days, here is what I think.

I don't know why Larry thinks that he and other autistics aren't payed attention to enough on the Hub. I read every post that every person puts up there. I don't comment as much on posts made by autistic persons, but I think that has been because there is a sense inside of me of a)not wanting, as a non-autistic, to hijack their post, and b)being less likely to question what they say about being autistic, because, hey, they're autistic and I'm not, so if they say something is a certain way, then it probably is.

As for my own blog, I freely admit that I'm not the greatest writer in the world. Decades of scientific education tend to beat creative writing skills out of you. But a long time ago I fancied myself a bit of a writer, and I'm trying to revive that part of myself. I have yet to find a consistent voice that runs thru all of my posts. I am a non-autistic parent of an autistic child. I don't think I should have to apologize for that. I have never tried to represent myself as a leader of anything autistic, and any advocacy I have done is primarily on the behalf of my son, as well as trying to create better understanding in the world that he will inhabit.

My writing may be spotty at times, and my topics may occasionally not be acceptable to all. But I don't have the time to worry about trying to censor myself so that I can get by the central committee censors. So if that is what is going to happen on the Hub, then I'm afraid that Kevin is going to give me the axe.

I've really enjoyed being on the Hub. I thought I had died and gone to heaven when I got the e-mail that I was being included. It was also nice to see my web stats go up. There are a lot of nice people that I've cyber-met thru the Hub, and I've considered it one of the prime sources of reliable information regarding autism on the web. Sure, some people (both autistic as well as not) on the Hub blog about things that are non-autism related at times. But I've enjoyed the humor, the pathos, the scholarship, and even the minor disagreements that have occurred. I'm not quite sure how I feel at the moment, but do know that I will continue blogging, whether I am considered a 'good parent' that is allowed to remain on the Hub, or not.

It seems just a bit ironic, that recently many were making fun of those on the EoH group for taking to task their own members who didn't have kids that were severely affected enough. Now we seem to have those on the Hub who would seem to be doing a similar thing, lashing out at those on the Hub who weren't toeing the line as they saw it enough.

I don't mind when someone breaks some eggs, but I do mind when the eggs seem to be blindly thrown at other's houses, and not used to make an omelette. I'm a bit player on the Hub, and easily dismissed. But I think that people like Kevin and Estee have been done a severe disservice, and deserve better.

Death by Suffocation

photo credit-Steve Brandon

Kristina Chew referred on her blog to an article today about an autistic individual who died while being subdued by police. According to the article:

...Mitchell died in a hospital last July following a struggle with deputies at his Perris home. Deputies responded to the residence after his mother called 911 saying she needed authorities to pick up her son. ...

The article was prompted by the mother filing a wrongful death lawsuit against the police. As might be expected, there are two different versions of what caused the incident:

...Sheriff's officials contend Mitchell died from autism-induced "excited delirium syndrome," a condition that leads to sudden cardiac arrest. ...

..."That's what they always say," attorney Carl Douglas said.

Douglas believes Mitchell died of positional asphyxiation after several officers piled on top of him. ...

Before I go any further, let me state for the record that I am generally supportive of law enforcement. I have expressed concerns about their level of training and how police interact with autistics, but I have also given praise when I felt they deserved it. They have a tough job, and have to make some tough decisions in rapid succession. They also aren't always trained as well as they should be to deal with "special case" situations, such as dealing with autistics.

After seeing the post on Kristina's blog today and reading the article, I just had to make some comments.

As a physician, I had never heard the term "Excited Delirium Syndrome" until I heard it bandied about as a defense when subjects had died in police/emergency workers custody shortly after being forcibly subdued by them. And I had never heard autism ever mentioned as something that might induce such a "syndrome". Personally, I don't think it exists as a separate syndrome.

Excited delirium syndrome has been used when a person dies in custody after being forcibly subdued. Typically the person that died was also under the influence of illegal drugs such as PCP, cocaine, and methamphetamine. All of these drugs can put a stress on your heart before, during, and after a forcible struggle with the police. While I do understand that sometimes force is required to subdue violent individuals, I believe that there is inadequate recognition of the possible negative outcomes that can result from forcibly subduing someone, which results to force being reverted to too often, and more importantly, improper after care once force has been applied.

Here is what I think happens in a "typical" death from "Excited Delirium Syndrome":

1) Police are summoned to take into custody a violent or potentially violent person. Being the police, they are expected to actively take action to deal with someone, especially if they are actively violent at the time. Sometimes I think that they take physical action too quickly when the person they are dealing with is not actively violent. This may be due to what we term "production pressure" in medicine (the push to get things done so you can move on to other important things), or it may be due to inadequate training.

In a typical scenario, once police arrive they typically want to control the situation as quickly as possible. Lack of control means too many variables, and too many variables means too many chances for someone to get hurt. So they rapidly progress thru their "use of force continuum" until they get control of the situation. This continuum differs a little from jurisdiction to jurisdiction, but typically looks something like this (from Wikipedia):

1. Presence
2. Verbalization
3. Empty hand control
4. Intermediate weapons (e.g., chemical, electronic or impact weapons)
5. Deadly Force (any force likely to cause permanent injury or death)

What I believe typically happens is that the officer, thru physical presence (man standing confidently in uniform with gun) and verbalization (may start with asking for compliance, rapidly progressing to orders of compliance-"come here, turn around, get down on your knees, etc.)tries to get compliance from the subject. Not getting the desired result, I think most officers resort to

2) Hands on techniques. Usually these start innocently enough as a gentle laying of their arm on the suspects arm or shoulder to get them to comply or come along, but then progresses to joint locks, arm bars, hair pulls, and other techniques to coerce compliance. I think it is at this point that things start escalating quickly. The police officer involved certainly has a lot of endogenous epinephrine (adrenaline) flowing in his veins, making it more difficult for him/her to judge how much force they are applying and for how long. The subject, especially if they have a hard time understanding what is happening (either because of drug/alcohol intoxication, language difficulties or cognitive disabilities) also has gone into a "fight or flight response" and starts fighting for their life. The police officer(s) now involved sense what is a very disorganized scene and rapidly escalate their responses to gain control. This may involve choke holds (which have been banned from many departments) or may involve multiple people striking the subject and/or "piling on" them to subdue them. This leads to what is a critical juncture, namely

3) Loss of ability to breathe for the subject. If a person has not been fighting forcefully up to this point, then they certainly will now. I've seen 80 year old sweet grandmothers become markedly violent when they can't breathe. It's a primal instinct. We can only go 4 minutes at rest without breathing. This time is markedly shortened when we are also expending maximum energy in trying to regain our airway. Officers may or may not recognize that they have compromised a person's airway at this point. I suspect that they are focused on subduing the person, not getting hurt, and not letting anyone else get hurt.

Not being able to breathe, while rapidly using up all your oxygen will predictably lead to unconsciousness. There will be a short period of time where recognizing the person is unconscious, rapidly acting to get everyone off them and open their airway, and administering mouth to mouth resuscitation will revive them. This period will be fairly short in length, though, and probably missed, leading then to

4) Cardiac arrest. At this point the person has quit struggling and the officers have spent time applying handcuffs to their wrists (and possibly restraining ankles also) with the person in the face down position. This makes it difficult for them to recognize that the person has indeed arrested, and failure to quickly resuscitate the person leads to

5) Certain death.

In analyzing the above scenario, there are a few critical points where decisions made can end up snowballing into possibly catastrophic consequences. The first point is the initial laying on of hands by police. If a person is actively trying to hurt another, then the police's hands are tied. But if they are not hurting anyone else, then I think that staying verbal longer can avoid some negative outcomes. The gentle laying of your hand on someone's arm can be soothing to many, but it can lead to atypical reactions in some populations (like autistics). Most people with autistics in their immediate family know that touching them when they are excited is not usually a good thing. At the least they involuntarily pull away, at worst they may lash out (usually indiscriminately). So even though it may take longer (sometimes a lot longer) to talk someone down, if it resolves the situation then it's a good thing.

The second critical point in the above scenario is in recognizing that the person's airway has been compromised. This is admittedly very tough in what has now become a fluid violent situation, but I think that if there is increased awareness of this possibility that there will be increased recognition and proper treatment when it happens. I also think that the police might want to borrow something from medicine.

Whenever we run a "code" on a person, if possible we designate a person the team leader, and that person does not get involved with manual tasks such as chest compressions, starting IV lines, giving drugs, etc. Their main role is to make decisions and constantly reevaluate the entire situation. The senior police officer on the scene has to try (if possible) to not become physically involved. This is admittedly very tough when the situation is not in control, but there is a greater chance of someone recognizing when things are going awry when they are not physically involved in subduing the individual. If they have to become physically involved in subduing the individual, then they need to rapidly back out of that role as soon as possible.

The next critical step is one that I do not believe occurs at present. That is, immediately after a subject stops moving in such a situation, someone needs to verify that the person is breathing. Often I suspect that the police, having gone thru their own "fight or flight" response, are very jittery and coming down from this at this time, feeling a bit more relaxed as the suspect is restrained. But this is a critical point in the confrontation, when seconds lost can have disastrous consequences for the subject. While there may be a feeling of "they got what they deserve" for fighting back at the time, as police can also be injured in these events, I don't think that upon calm reflection any police officer would think that any person "deserved" immediate death on the street for resisting arrest. Increased recognition of loss of airway commonly occurring in these situations needs to be stressed in training of officers, as well as ways to recognize and deal with it to prevent further injury to the subject.

In light of the above, and since police officers are not really trained to act as first responders for medical issues, I would think that policy should be changed such that paramedics are on the scene before any person that is not violent is approached with physical measures. This suggestion will certainly result in a large uproar from those in emergency services. But I think that in terms of preventing lives lost it may be necessary.

Sex Ed

photo credit-Just Some Chick with a Camera

I knew that there would come a time that we would have to talk about the birds and the bees with the kids. Little did I know that questions would come so soon...

As you may recall, Sweet Pea has had a fascination with having a baby for over a year now. It's not quite an obsession, just something that never seems to be far from the surface.

Liz related this story to me the day it happened. A couple of weeks ago Liz was driving Sweet Pea home from pre-school. They were on the way to pick up Buddy Boy from his school. Sweet Pea, ever the little Miss Gabby, was going on about all the kids at school, the birthday party she was going to that weekend, and what she wanted for dinner.

All of a sudden she jumps right in with "When the man puts the seed in the woman, does it hurt?"

Liz reads a lot of science stuff with Buddy Boy. He knows a lot of facts about a lot of stuff. Sweet Pea usually acts as if she's not paying attention, but evidently when they were talking vaguely about sexual reproduction in some animal she was all ears.

When Liz related this to me, I was like "What? Well, what did you say?" I usually believe in not lying about such things, but 5 years old??? I was hoping she came up with some distraction or vague answer. Failing that, I must admit that I hoped she lied.

"I told her no, it didn't hurt".

"What?! Have you forgotten that we were raised Catholic? Are you totally unaware of the power of instilling guilt? You should have told her that there was nothing more painful in the whole universe (I was only half joking)! Then what did she say?"

"That she wanted a hot dog for dinner."

I am so not ready for any of this yet.