If They (She?) Only Had a Heart

photo-Thomas Hawk
Creative Commons license

In "The Wizard of Oz" the Tin Man joins Dorothy, the Scarecrow, and the Cowardly Lion on a journey to Emerald City to see the Wizard, in hopes of obtaining a heart.  Paul Corby probably wishes all he had to do was stand up and fight a wicked witch.  Instead, he had to submit himself to a committee of people that dole out hearts for transplant at the Hospital of the University of Pennsylvania (or HUP, as they like to be called).

Usually the committees that decide whether you are "qualified" to receive a heart are fairly secret.  People within the institution may know who they are, but they don't usually put their names out for public consumption.  Such committees that dole out scarce medical resources have a long and storied history.  The original such committee was formed in Seattle when kidney dialysis first became available in the early 1960's.  This committee, dubbed "The God Committee", made decisions on who should be lucky enough to receive dialysis based at least partially on social factors (who had the best job, good character, etc.).  In later years the public was appalled by their somewhat arbitrary means of choosing who would get dialysis (live) and who would not (and would die).  Modern committees that decide who gets scarce solid organ transplants (hearts, livers, lungs, kidneys) have drawn up criteria that make things somewhat more objective (severe heart failure, low levels of oxygen, etc.).  Also included in the criteria are some "softer" things such as the ability to undergo complex medical treatment and emotional stability.

It would come as no surprise to anyone who has had to deal with the stares and snide remarks when you go out in public with an autistic person that the committee to dole out hearts at HUP declined Paul Corby as a suitable candidate.  Because, well, Paul's autistic.  Which means he probably appears to those who first meet him as a bit odd.  Maybe even scary.  Because he's different.  Liable to talk louder.  Or perseverate a bit.  Dr. Susan Brozena, a cardiologist at HUP, sent Paul's mother a letter that said

"I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."

There was no indication that the group of people (if indeed, it was a group that decided.  There is some indication that Dr. Brozena consulted with only one other doctor) who decided this did not consult with anyone who actually treats autistic patients to determine his suitability to undergo treatment.  Dr. Brozena evidently feels that it's much easier, when a scarce organ is involved, to go for either money or fame, rather than to try and give out organs equitably.  In a scandal at Los Angeles' UCLA Medical Center, four members of the Japanese Yakuza received organ transplants, allegedly jumping ahead of others on the waiting list. Two of those Yakuza later donated $100,000 each to the medical center.  I'm sure HUP realizes that Paul Corby doesn't have that kind of scratch laying around ready to donate to them.  Which is perhaps why they wish he'd JUST GO AWAY.  Again, from the letter

...if you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.

 Autism is not a death sentence.  Unless, of course, it's combined with a failing heart, in which case it's enough to get you disqualified for a chance at a cure.

Other stories on this subject can be found in The Washington Post, New York Daily News, Strollerderby blog, and Wesley Smith's blog.

A change.org petition on this is located here.

HUP accepts comments here.

If you'd like to contact Dr. Brozena and let her know your opinion, her published email address is:

brozenas@uphs.upenn.edu

Her other published contact info is as follows:

University of Pennsylvania Health System
Heart Failure/Transplant Program
6 Penn Tower
3400 Spruce Street
Philadelphia, PA 19104

Office: (215) 615-0812
Fax: (215) 615-0828

I think that Dr. Brozena needs to know that it's OK to change her mind.

Georgia Scores a Hat Trick

photo credit-thebigo
creative commons license

In the game of hockey, a hat trick refers to when a single player scores three goals on the opposing team during the same game.

In the game of "how can we be the most discriminatory against autistics", the US state of Georgia has been in the news three times in the last two weeks. First it was charging a 14 year old autistic boy with felony terrorism charges for stick figure drawings he put on his homework. Then it was police using a taser on an 18 year old autistic young man who didn't answer their questions fast enough, and appeared different.

Today Georgia is in the news again, and again it's for tasing an autistic man. According to Fox News:

"Twenty-three-year-old D.J. Moran said multiple officers surrounded him, cuffed him on the ground and then tasered him, MyFoxAtlanta reports."

Of course, the multiple officers couldn't possibly handle this after they surrounded the man and were putting him on the ground, so they just had to taser him:

"Police officials released a statement saying, 'The officer used a taser when the suspect failed to cooperate by struggling and resisting, after being instructed to place his hands behind his back. The suspect only complied after the taser was used.' "

Fortunately, even though the police tried to cover themselves by charging the man with multiple felonies, a jury (who saw a police cruiser cam video of the event) saw things differently:

"Police charged Moran with multiple felonies, but a jury did not convict him."

So congratulations, Georgia! Guess I won't be spending any of my vacation dollars in your state this year.

Terrorism? Really??? Or "Get Out of Our School!"

If this wasn't so over the top ridiculous, it might be funny.

A 14 year old Georgia boy has been charged with a felony (making terrorist threats) for a small (about 1 inch high) set of stick figures he drew on a paper in class. The stick figures depict one figure (labeled "me") shooting another stick figure (labeled with his teacher's name).

There is no question that his drawing the picture was both inappropriate and wrong. There is also no question in my mind that the school's response is so wildly disproportionate as to make me question why they would do such a thing. There has been no allegation of the boy attacking his teacher, bringing a weapon to class, or even of having formed a definite plan as to how he would accomplish the task in his drawing. There has been no mention of the school consulting with anyone else (the boy's doctor, their own psychologists, the police) to evaluate the situation as to how likely it was for the boy to be able to carry out his threat, much less evaluate the seriousness of the situation.

Many people threaten to kill their spouses every day. They very seldom get arrested, much less charged with making "terrorist threats".

So why would a school do such a thing?

My guess (and it is a guess, as there's been no statement I've seen from the school) is that this charter school where the boy is enrolled wants to dump this "problem student" from their school, and that they are using this as a convenient excuse. Many charter schools don't want to spend the time and money it takes to properly educate children with special needs.

This could end up as a case of "zero tolerance" gone wild, but I suspect that, in the end, the school will come up with some "compromise" that will entail dropping or lessening the charge, as long as the boy withdraws from the school (or accepts another placement they have suggested).

Walking While Black and Autistic

The phrase "Driving While Black" is one that is familiar to every African-American in the U.S., and refers to the practice of African Americans (especially young black males) being singled out by the police for "special treatment" when they are driving. Otherwise known as racial profiling, through either upbringing or isolated experiences many police officers come to unfairly believe that the majority of blacks must be up to no good, and thus deserve to be singled out for closer scrutiny, and assumed to be hostile until proven otherwise.

Steven Eugene Washington, a 27 year old black man who reportedly had never had a run in with the law, was shot dead while walking to a friend's house the other night in Los Angeles. When he was reportedly approached for "acting suspiciously", he reportedly

"...did not comply with their investigative demands and appeared to be reaching into his waistband. Fearing he was reaching for a weapon each officer fired once. One bullet struck Washington in the head."

While the LAPD gives its officers a one hour course in dealing with autistic individuals, the department could not say whether the officers who shot Washington had taken the course.

My ten year old bi-racial son had a large birthfather. He will be a big man. This scenario is one of my greatest fears.

I ache for the Washington family tonight, and long for a world where more than one hour is spent training first responders.

Temple Grandin BBC Documentary

Lately many people have been commenting on the HBO Temple Grandin movie that was just released. I watched the movie this last week with my family. Overall, I would say that it was pretty good. I don't expect Hollywood to get many things right, but I'd say they did a pretty fair job with this treatment. Claire Danes did a much better job than I expected. I feared before seeing it that she was much too "glamorous" for the role, but she did a good job of capturing the general tone, and playing things pretty straight.

Here's the trailer from the HBO movie:

Trailer

Buddy Boy told me several years ago that his mind was like "a video camera. I can just hit rewind, and see things over again." He had never heard of Temple Grandin at the time. After seeing the movie, he asked if I thought Temple could teach him to think in pictures. The HBO movie presented it as Temple thinking in black and white still pictures. I guess he saw this as fundamentally different from his thinking like there's a video recorder running in his head. I told him she probably couldn't teach him to think in pictures, as everyone pretty much thought the way they thought.

For those who have access to HBO in the states, I think it's definitely worth a watch if you have time. For those without HBO access, I'm sure it will be out on DVD soon.

Also, on a local list I'm on, someone sent me the links to a nice BBC documentary on Dr. Grandin on YouTube. You can see it here:

Part 1:
http://www.youtube.com/watch?v=46ycu3JFRrA&feature=related

Part 2:

http://www.youtube.com/watch?v=f-iy7GNsmm0&feature=related

Part 3:

http://www.youtube.com/watch?v=QDWH_Sfnoc0&feature=related

Part 4:

http://www.youtube.com/watch?v=Epwa0zQ8jx8&feature=related

Part 5:

http://www.youtube.com/watch?v=aidkSBsyDlA&feature=related

The Nail That Sticks Up...

Will Be Hammered Down.

So goes an old Japanese saying, meant to illustrate (as well as inculcate) a sense of conformity among the Japanese people. Westerners (especially Americans) are supposed to place much more value on non-conformity and individuality.

But that idea only goes so far, and is noticably absent in the American public school system. When it comes to school kids, conformity is king. And if you step out of line, you will be hammered down, sometimes quite forcefully.

Nowhere is this more evident then when it comes to kids with disabilities, especially those on the autism spectrum. Often, kids on the spectrum have various sensory processing difficulties, and may also persevorate on certain things. When they run into difficulty, they can get emotionally "wound up" fairly quickly, and appear to be "acting out" and being volitionally bad. When given a little extra time and understanding, their behavior is most often a slight inconvenience to those around them, and at worst a slight nuisance. But when those around them insist on total conformity, and react by touching the person and physically restraining them, then the autistic person (like most people physically restrained for reasons they don't understand at the time would) react with a "fight or flight" type of syndrome and lash out at those restraining them.

Google the words "child autism arrested", and you quickly are faced with several stories over several years that seem to follow the same script: A child on the autism spectrum is placed in a regular classroom (often with a history of the family fighting for more support than what is being provided), said child "acts up" a bit (involving no or minor physical interaction with staff or other children), teacher reacts by physically restraining child, child "lashes out" (by kicking, pinching, biting), police are called, and child is arrested. There is often no behavioral plan in place to deal with the child's behavioral difficulties, and if there is a plan, it is often not followed. Children as young as 5 years old have been placed in handcuffs and arrested. Others who are slightly older are not only arrested, but sometimes thrown in psychiatric institutions or jail.

Such is the case with Zakh Price, age 11 (his picture's at the top), who was arrested and charged with a felony. Click Zakh's name to read Emily's excellent investigative piece into this latest travesty of justice. Another article detailing the facts can be found here. And Emily's follow up piece detailing some of the personal attacks made against Zakh and his grandmother can be found here.

This story rings all too true to me. My son is in fourth grade, and while the police have not been called on him (yet), the school district had threatened to do that in the past, when he was 5 years old. That period of time resulted in a short detour to a class for emotionally disturbed children, LOTS of meetings (with their lawyers, our advocates, and our lawyer), and a bunch of money payed out in legal and consulting fees. I was fortunate to be blessed with coworkers that allowed me flexible time off to go to all the meetings, as well as a job that pays well enough for us to afford the bills that came with this.

Zakh is lucky to have his grandmother, Carole Reynolds, who is a staunch advocate for him. Unfortunately, Carole is tapped out of the kind of money that legal representation requires, and she needs some help.

The Autistic Self Advocacy Network (ASAN) has issued an action alert, which lists e-mail addresses and phone numbers you can call to register your concerns. A website set up to take donations for Zakh's legal bills has also been set up for him.

I admit that I don't usually donate to online causes. Not only are there so many of them, but it's often difficult to discern which are legitimate, and which are scams. ASAN is a legitimate organization (Its president, Ari Ne'eman, has been nominated to be on an advisory council to the President of the United States), and Emily is a top notch, ethical person who's truthfulness and judgement I totally trust.

So I'm asking you to do what I did. Go to the website, click on the "Chip In" button, and give what you can. Even if it's 1,5, 10, or 20 dollars, everything will help. And keep this family in your prayers.

Unfortunately this story is not unique. But it does seem to be much more common for school districts to try to get out of paying for proper supports for children with disabilities by dumping them into the legal system. Perhaps there is also an attempt to silence those who would have the temerity to ask for support that the system is not willing to provide. Perhaps such prosecutions are meant to silence those voices before they even speak up.

Let the people in Fort Smith, Arkansas know that treating an 11 year old with a disability this way is unacceptable. Support Carole Reynolds as she supports Zakh. Go to the website. Make that donation.

Now, before it's too late.

What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

A Sad Case

photo credit-mdkiteman
creative commons license

I saw this story yesterday, "Mother Accused of Withholding Cancer Medication from Autistic Son", in which a mother of an eight year old autistic son with lymphoma has been charged with neglect for failing to give him his chemotherapy at home.

Basically, the child had lymphoma, got his initial chemotherapy, then was supposed to follow up with home chemotherapy and additional follow up appointments, many of which were supposedly missed. Now the tumor has recurred, and is more aggressive, and the child's chance of survival has gone from 90% to 10%.

To complicate the situation, in addition to the child being autistic, the parents are going thru what has been described as a "bitter divorce", where the father hasn't had recent contact with his son, but has now assumed custody.

Orac has a good post up on this, but I thought I'd add my take.

In ethics, one way of approaching problems where there is conflict is termed the "4 Principles" approach. The authors Beuchamp and Childress wrote a groundbreaking book on medical ethics in 1979, which is now in its fifth edition. In this book, the authors describe four principles that could be used to assist in deciding questions of medical ethics. The four principles are usually listed as "autonomy, beneficence, non-maleficence, and justice". A fairly good concise overview of these principles can be found here.

Although Beuchamp and Childress never argued that any one principle should be more important than any of the others, in American medicine and ethics circles autonomy has generally been held to be "first among equals". What this means is that, generally speaking, a competent adult has the right to refuse any treatment, even if doing so would kill them.

As children generally can't decide for themselves what is best for them (especially 8 year olds), their parents are usually given broad leeway in making decisions for them. Historically speaking, however, there are definite limits to this authority.

For instance, if a child needs a life saving blood transfusion but the parent's religion doesn't allow for any blood products, then it is routine in children's hospitals for emergency custody to be granted to someone appointed by the state, who will approve the transfusion. This case appears to be similar, but not totally identical, to the case of a blood transfusion. In this case, a relatively simple (but still with arguably potential serious side effects) was withheld from the child by the mother (according to the charges). The question is whether the mother should be able to act on her son's behalf and refuse treatment.

Before going further into this, let's go back to the other three principles.

Beneficence means doing the best thing for the patient. It would seem obvious that giving the child the chemotherapy would be the best thing. But each adult has the right to refuse treatment, even chemotherapy. And even with the chemotherapy, there would be a 10% chance of dying. A competent person might say that they would rather have a 10% chance of living, and not have to undergo the pain of needlesticks, the constant nausea, hair loss, weight loss, fatigue, etc. But certainly most people would choose to undergo all of these things in order to improve their chances of survival from 10% to 90%. And most of the time, although chemo is still chemo, outpatient follow up treatments generally have a lot less severe side effects than the initial inpatient treatment.

Although I often think of this Disney character when I hear the word, non-maleficence, what it actually refers to is not harming the patient. The second thing I think of (after the Disney character) is the medical aphorism "First, do no harm." Again, what we balance here is a large potential future harm (recurrence of the tumor, which is what in fact happened) against the immediate harm of undergoing treatment. Perhaps undergoing treatment for this autistic child was particularly difficult. Treatment may have included injections of chemotherapy into the spinal canal, and depending on whether they were willing to anesthetize the child for these, it might have been fairly traumatic (even undergoing anesthesia to have it done might be fairly traumatic). So it's not necessarily a total slam dunk when it comes to considering non-maleficence.

Finally there's justice, which basically means doing what's fair, as well as what's best for society as a whole. Society benefits from having healthy citizens. And most people would agree that all people deserve to get chemotherapy for a tumor. So I think that most would agree that justice would fall on the side of the child getting chemotherapy.

So what we are left with is questions of the mom's ability to speak for the child against the state's interest in having healthy citizens, and beneficence weighing heavily on treating the disease process, as the treatment is mostly safe, though it has some potential bad side effects.

I think that most people would treat their child in a situation such as this, which is why people are up in arms, and why charges have been filed. The mother may have a certain degree of ignorance regarding the risks involved, and may also not have a lot of support in her life at the moment (though I know that's no excuse). The father may or not be a "victim" in all this. He may share some of the blame for not picking up some of the slack, or may have been actively excluded by his wife. It's hard to tell from outside.

In the end it doesn't look forward for the child, but we can all hope for miracles. And I hope that the child's autism did not enter into the mom's equation of whether to withhold treatment or not.

What Happened??!! Jett Travolta dies

My wife tells me not to jump to conclusions, but I'm very suspicious right now.

John Travolta's 16 year old son, Jett, has died while on vacation with his family in the
Bahamas.

According to TMZcom:

... Jett was last seen going into the bathroom at their private suite at the Old Bahama Bay Resort sometime yesterday. The body was discovered by the caretaker, Jeff Michael Kathrein (pictured bottom right with Travolta in 2006), at 10:00 AM today. The report says Jett suffered from seizures. ...

Jett was widely rumored to be autistic, though the Travolta's denied this, and said instead that he had Kawasaki syndrome (an autoimmune disease that can lead to heart disease). Being autistic is something that is seen as a defect by Scientologists, which is the "religion" that the Travoltas belong to.

My immediate questions are:

1) Why was a 16 year old unaccounted for from yesterday evening to 10:00 am this morning? What adult was responsible for him?

2) Did Jett have a documented seizure disorder?

3) What medicine was he on, and who gave it to him (i.e., did he have proper blood levels of the drug)?

4) Was Jett undergoing any "detoxifying" treatments while he was in the Bahamas? Could chelation leading to a chemical inbalance have caused the seizure?

I'm not jumping to conclusions. But I hope that this unfortunate death is fully investigated, and the truth is made public.

Ribbit From the Headlines (aka Kneedeep in Controversy)

photo credit-Parksy1964
creative commons license


Amongst all the commotion regarding Savage things said by one individual, Neandarthal comments from a Canadian source, and initial forays into genetic testing for autism, one little story seemed to slip under the radar.

Human-frog hybrids reveal autism's secrets says the headline in The New Scientist magazine article.

Human-frog hybrids might reveal the neurological secrets of autism. By fusing cells from the preserved brains of deceased autistic patients with the eggs of a carnivorous African frog called Xenopus, scientists have started investigating the way the brain cells of people with autism behave. ...

The creation of chimeras, or combinations of two different species, is not new. But the creation of animal-human hybrids is a relatively new endeavor. In 2005 Dr. Eugene Redmond went to the Caribbean to implant human stem cells into the brain of African monkeys. He hoped to get those cells to produce dopamine, and lead to a cure for Parkinson's disease. In 2007 British regulators approved human animal hybrid creation to create new stem cell lines. And now this type of research is coming to California, with little fanfair.

...To see if abnormalities in neurotransmitter signalling also underlie autism, Miledi's team collected brain samples from six deceased autistic patients, aged eight to 39. They fused brain-cell membranes, which house neurotransmitter receptors, together with Xenopus egg membranes. As a control, they did the same thing with brain cells from patients with no history of mental disorder. ...

While some, like the Scottish Council on Human Bioethics, issued cautionary statements regarding this type of research, it would appear that most of the public goes along with this type of research, "if it might improve understanding of diseases." The Danish Council on Ethics has a nice summary of some of the issues involved, including whether certain rights would accrue to such chimeras, whether such creations could be owned, and whether they could be killed.

Evidently there have been chimeras produced in the U.S. for some time now, but ethical questions (other than public discussions regarding human cloning) have largely been ignored.

I'm not positive that I might not change my mind in the future, but as of now, I would definitely count myself in the camp of being against chimeras, whatever the purpose. While I am sure that Peter Singer would approve, as he sees no difference between humans and other animals, I see a lot of potential problems with blurring the lines of what is human and what is not.

Another thing that bothers me about this is that perhaps autistic humans were chosen to do this because they were viewed as diseased and damaged, and not quite human anyway. Therefore anything would be okay with such a population. This was never stated anywhere, but just a nagging little thought at the edge of my consciousness.

I don't think that "the ends justify the means" in the vast majority of circumstances. Thus I don't believe that the results of unethical studies should ever be published, or used by other researchers as a basis for their own work. Too many scientists forge ahead to be the first in their field, and don't stop to consider whether what they are doing is right or not. I think the least we owe ourselves and our descendants is a full and honest discussion of the ethical concerns of such research. Just because we can do something doesn't necessarily mean that we should.

Rivisitare

To help celebrate the inclusion of Autism Hub Bloggers at the conference starting today at the University of San Diego, Steve D of One Dad's Opinion has asked for people to revisit a favorite post that they have written in the past. For my part, I have selected this one, originally posted on February 25, 2007.


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

On Raising Cowboys



...And them that don't know him won't like him
And them that do sometimes won't know how to take him
He ain't wrong he's just different
but his pride won't let him do things to make you think he's right...
------------------------------
from "Mama Don't Let Your Babies Grow Up to be Cowboys"
by Willie Nelson

So Yesterday I had occasion to drive 300 miles one way to another city for a function, then after 4 hours, drive back another 300 miles.

I was alone, and able to indulge some of my eclectic musical tastes. I ended up listening to some Cowboy Junkies, the Diner Junkies, and Willie Nelson (an ex-junkie).

Maybe I'm just picking up one of Krisina Chew's habits and seeing autism everywhere. But as I'm listening to Willie singing the above song I heard those lyrics, repeated the track again to make sure I heard them right, and the thought occurred to me, "I'm not raising a son with autism, I'm raising a cowboy".

And I thought (I do a lot of free association and just plain weird thinking while driving long distances alone) "I wonder if the world would understand my son better, and treat him better, if I just told them he was a cowboy?"

Cowboys have a long tradition in America, and despite a few people using the term "cowboy" in a negative sense when referring to President Bush, there is a long and deep tradition of positive attributes being attributed to cowboys. Mention being autistic, however, and there only seem to be negative stereotypes that come to most people's minds.

Cowboys are entrenched in the lore of the United States, with many of them acheiving legendary status.

Most cowboys were men, but some (like Annie Oakley) were female. Cowboys were (and are) generally people who don't talk much, and are rugged individualists. They tend to keep to themselves, and don't much care if others understand them or not.

Cowboys have a code of ethics that is looked up to so much that some have suggested a version of it be used to instill ethical business practices in individuals.

I could see it now. When the school calls to complain about Buddy Boy exhibiting some behavior that doesn't seem to fit the mold they want to put him in, I could just say something like "You don't understand, he's a cowboy." This would be all that I would have to say to convey to them that my son was different, and in a good way.

Rather than expecting him to conform to arbitrary rules they had set up, they would instantly understand (because of the shared cultural knowledge) that my son was indeed different, and was probably destined for greatness. As they had a genuine cowboy amongst their midst, they would fall all over themselvs making efforts to individualize their educational efforts, much as all of society caters to celebrities. They would also expect great things from him, and as many studies have shown, when teachers expect great things from students they tend to get them.

My apologies to any Europeans reading this. You'll have to get your own legendary figures to latch on to to get the schools (and society) to treat you and your kids better.

Evidence of Idiocy

As if she hasn't done enough damage, I ran across this on another list that I am on:

FOR WORLD AUTISM DAY: APRIL 2 – Jenny McCarthy & David Kirby for a full
hour on LARRY KING LIVE

Wednesday, April 2

On World Autism Day, the controversy over vaccines! Do they contribute
to autism, or is there a greater risk going without? Actress and mother
of an autistic child, Jenny McCarthy, debates the issue with medical
professionals.

Now Larry King doesn't strike me as being very balanced on this (he has had Jenny on several times regarding autism). But the one good question he did ask recently was regarding adult autistics, to which Jenny responded that she'd never met any. Since King is basically a celebrity junkie and not a journalist I guess I can't blame him for going with B grade celebrities that will boost his ratings.

I guess the only good that might come of this upcoming show is that eventually even people that are not really paying attention will start to get the message that Jenny is a total air head, and has absolutely no science or reason to back up her beliefs.

On Larry King's website:
http://www.cnn.com/CNN/Programs/larry.king.live/
if you go to the April 2nd show, there is a button where you can submit questions for the guest (I guess it's cheaper to have the audience make up the questions rather than have a researcher). I'm counting on the "medical experts" on the show to carry the factual side regarding vaccines, so I asked

Jenny,

Do you still believe that you are an "Indigo Mom" and your son Evan is a "Crystal Child"? If so, what do you base this on?

I encourage everyone to go there and submit your own questions. I don't even want to comment on Kirby. He seems to have the minimal intelligence necessary to know that he's totally screwed up.

Trump Card

photo credit-iboy daniel
creative commons license

Kristina Chew got me thinking today with her post on "Race, Diagnosis, and Identity". In it, she talks about her son Charlie's biracial (Asian/Caucasian) heritage, as well as his other difference, his autism. Kristina also references an article by Peggy Orenstein in the New York Times Magazine called "Mixed Messenger", which discusses Barack Obama's biracial status as a candidate, and being biracial in America today.

When Liz and I were contemplating adoption, we thought long and hard about whether to adopt trans racially or not, which race children we would accept, and what sorts of disabilities we would accept (our children, Buddy Boy and Sweet Pea are biracial African-American/Caucasian). It all sounds so clinical, cold, and calculating, but that's what the adoption process asks of you. You are forced to fill out forms stating what types of children (sex, age, race, disabilities) from what types of parents (drug abusing, smokers, psychiatric issues) you are willing to accept for placement.

I knew that kids who had been adopted often had some issues to work thru regarding having been adopted, and I also knew that kids who had been adopted trans racially sometimes were OK with it, and sometimes felt very much like outsiders amongst their own race when they grew up (and resenting their parents who raised them). I always figured that issues of race would rank high within our family as our kids grew up.

Although our kids are both black and white, I realize that in many places and situations in American the "one drop" rule applies (as long as you have one drop of black blood in you, you are considered black). I knew that even though Liz and I would try to do things to make our kids feel comfortable with their racial identities, that we would most likely not be able to do this fully, and perhaps not even well. And I didn't want to cheat our kids in this very important aspect of their lives. On the other hand, I knew that there are more African-American and biracial African-American children waiting for adoptive parents then there are minority parents waiting to adopt. Thus the choice wasn't necessarily between our kids going to an African-American or biracial couple rather than us, but rather perhaps having to wait much longer to be adopted (or not being placed at all) or being placed with us.

I also worried about how African Americans would accept us as a family. I knew that part of having them grow up being comfortable in their skin would involve us seeking out relationships with African Americans, and I didn't want our kids to see us getting the cold shoulder from black people. This, it turns out, was a totally unfounded fear. Once we adopted our kids an amazing thing happened. I have never felt anything other than acceptance (and even love) from African Americans I know.

So I guess the bottom line was I expected that issues of race would be foremost with us as a family, followed by issues with adoption. Little did I realize when I started this journey as a dad that autism would trump both of those (at least for Buddy Boy). For the last 5 years autism has made my previous concerns regarding race and adoption fall completely to the wayside. I still worry how issues of race will affect my children in the future (as well as my ability to prepare them for the discrimination that they will feel once they leave the protective cocoon of being accompanied by their lily white parents). I also worry specifically how issues of autism and race will interact in the future with Buddy Boy. One of the biggest fears I have involves Buddy Boy having a meltdown as a teenager, and being perceived as an "angry young black man" by a police officer, and being arrested (or worse) because of the interaction of his disability with his race. Orenstein in her article mentions

A few weeks ago, while stuck at the Chicago airport with my 4-year-old daughter, I struck up a conversation with a woman sitting in the gate area. After a time, she looked at my girl — who resembles my Japanese-American husband — commented on her height and asked, “Do you know if her birth parents were tall?”

While I don't think anyone should have to suffer other's assumptions about their children, given the choice of someone assuming Buddy Boy was adopted internationally vs. someone assuming he was a gang banger, I'd take the first assumption in a heartbeat.

But for the last several years learning to deal with all the myriad aspects of Buddy Boy's autism (and more importantly, fighting against a system that wanted to label him as behaviorally disturbed for education purposes rather than autistic) has consumed most of our energy on a day to day basis.

I know that with Sweet Pea we'll still have the issues of race and adoption to deal with. At 5, she's already hit us with the "I wish my skin was white like yours" plea. While I know intellectually that statements like this are to be expected in trans racial adoptions, it sure made me feel inadequate as a parent at the time. Had living in a racially mixed neighborhood, playing with the black kids across the street, having a black babysitter, reading to them about black accomplishments, going to museums, had none of this had any effect? Had we neglected Sweet Pea's development of racial identity because of our time spent trying to get Buddy Boy into (and keeping him from getting kicked out of) a proper educational setting?

I guess in the end there are different trump cards at different times. I also know that part of being a parent is to feel constantly inadequate and not up to the task.

Features of Autism Spectrum Disorder

Of our two kids, one is on the autism spectrum. So I'm not surprised when I come home and see toys lined up as in the above picture, as people often write that such things are common. In retrospect, I also shouldn't be surprised that the same child that lined those toys up also had a lot of GI issues as a baby, likes to hide under tables at times, and is somewhat hyperactive. We have also had a lot of problems with toe walking, to the point of having to put leg casts on for several months. Even though not all of these things are listed in the DSM-IV, many children on the spectrum have these same issues, so it shouldn't be surprising that my child displays these features.

Except for the fact that the child I'm referencing above is my younger one, Sweet Pea, who is most definitely not autistic.

Sweet Pea is one of the most social kids in her class, and would never qualify for an autism diagnosis.

Recently, in the Poling case, the Division of Vaccine Injury Compensation decided

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

Many people say that this document says that the government admits that vaccines cause autism. Rather than focusing on what Hannah Poling primarily has (mitochondrial disease), many have focused on the phrase "features of autism spectrum disorder".

Having never met Hannah Poling, I'm not sure if she is on the autism spectrum. It is entirely possible that she is. If one out of 150 individuals are, then it makes sense that at least one out of every 150 individuals with mitochondrial disease is also autistic, independent of their mito disease (I know, there may be more, but I'm talking independent of their mito disease, not linked to it). But the court document doesn't say Hannah is autistic, just that she displays "features of autism spectrum disorder". And someone looking at certain aspects of Sweet Pea's behavior and condition might decide that she had "features of autism spectrum disorder" too, which I know is totally false.

In Case There Was Any Doubt

There are a lot of interviews out there with the Polings, following the announcement that the Vaccine Injury Compensation program had ruled in their favor. One of them I saw was over at ABC News.

Two things struck me when I viewed the video that's up in the upper right corner on that page. The first is "What's their lawyer doing with them?" I mean, the decision is already in, and this is a civil case, not a criminal case. Were they afraid that they would say something incriminating? Or were they afraid that they would say something that would jeopardize the amount of the pending settlement?

So then I looked up the lawyer. The lawyer is Cliff Shoemaker, who is no stranger to vaccine litigation. As it says on his website,

"Today, Cliff is one of the lawyers focusing his attention on the national disaster that occurred in the 90's when we poisoned a substantial number of our children with mercury, creating an autism epidemic."

Cliff was also evidently the lead attorney for CoMed (Lisa Sykes) in suing the FDA to get mercury out of vaccines.

The other thing that struck me about that ABC interview was that the father, Dr. Jon Poling, referred to the head of the CDC, Dr. Julie Gerberding, as "Ms. Gerberding" when there's about 3:30 left in the video. Now it may have just been a slip of the tongue on his part, but I find it hard to believe that a doctor would not know that the head of the CDC was a physician (who also holds a Master's in Public Health). And I also find it hard to believe that a doctor would not use a fellow physician's title when referring to her. Unless of course he was trying to purposely make her seem less knowledgeable and important. I mean, after seeing over at Kristina Chew's site that Jenny McCarthy is calling for the immediate resignation of Julie Gerberding as the head of the CDC, I started to wonder. If I was a conspiracy theorist, I might think that the Polings were coordinating with the Age of Autism folks to try and get Gerberding removed.

Meanwhile, Lenora pointed out in a comment to my last post that Dr. Poling gave an interview over at WebMD that didn't seem to jive with the press conferences.

Indeed, in that interview Poling says both

"I don't think the case should scare people," says Poling, 37, who emphasizes that vaccines, like all of medicine, carry risks and benefits.

as well as

"Vaccines are one of the most important, if not the most important advance, in medicine in at least the past 100 years. But I don't think that vaccines should enjoy a sacred cow status, where if you attack them you are out of mainline medicine."

"Every treatment has a risk and a benefit. To say there are no risks to any treatment is not true.''

"Sometimes people are injured by a vaccine, but they are safe for the majority of people. I could say that with a clean conscience. But I couldn't say that vaccines are absolutely safe, that they are not linked to brain injury and they are not linked to autism."

This interview seems to be a "face saving" attempt by Dr. Poling with the mainstream medical community. A way for him to say that he knows that there is no science behind the court decision, but that he didn't need science, just a little doubt. The WebMD quotes are clearly different from his media interviews, where he emphasizes that he feels strongly that there are thousands of other cases just like his. Statements that will certainly scare people away from vaccination.

I find it hard to comprehend why a physician could (rightly) admit that there are risks to every procedure or treatment, and then feel entitled to payment when something happens. Has he bought into the theory that every bad outcome needs to be compensated? I hope he isn't too disappointed when patients start sueing him for every bad outcome that happens to them, whether it was his fault or not.

My parents used to criticize me hanging out with certain kids because they weren't good kids. They rightly told me that I would be judged by the company I keep.

Well, Dr. Poling, I think you're going to be judged by the company you keep, as well as all the comments you make. A little backsliding on a medical site won't make up for the fear mongering and atrocious statements not backed up by science that you make to the media, or the fact that you are hanging out with people who hold views that are not supported by any science at all.

It's Not Our Fault!!

photo credit-eatmeatnow
creative commons license


Thanks to S.L. for putting up a link to the Poling news conference on the CNN website.

Kristina Chew has detailed this case (the case that some claim links vaccines to autism, but most see no such "concession" by the government) here and here.

As I watched the news conference, I became increasingly frustrated, and then angry. You have this high power couple (he a neurologist, she a nurse turned lawyer) who obviously aren't hurting for money. Even if they haven't made it big yet, they certainly would have been able to provide for their daughter (as well as their two other kids) without the government settlement. So why did they feel compelled to go forward with this case? One thought kept coming back to me. I could almost here mom say,

"We've been cheated!"

"We had a nice, NORMAL, daughter. We were supposed to have a summer house on the Outer Banks, ski in Colorado every year, and in general be a power couple". Now mom didn't really say those things, but that's what I understood her meaning to be.

The mother did say "Hannah needs constant one on one supervision" and "My husband's heart broke when he realized his daughter might have autism". Meanwhile, the camera pans over to show a cute, well behaved 9 year old interacting with two people over on the side. And I can't help but feel sorry for this girl, who will grow up with the story that she was "damaged" by vaccines, but the parents got the evil government to pay. How she was "normal" before this (despite her genetic mitochondrial disorder-which the parents never mention), but now she is damaged goods. Supposedly mom (Terry Poling) also has a mitochondrial disorder, but has no outward signs.

Maybe mom feels guilty about "causing" her daughter's "autism", and wants to make sure that no one in their circle of friends will blame her. Perhaps she's thinking, "The government admitted it! They're the ones that did this to us! We're just like you, really we are."

I find this rather sad.

The money from the government will assist the Polings in keeping up the lifestyle they feel entitled to. They can point to the government case to "prove" that they are truly a "normal" power couple who were done wrong by their own government. And poor Hannah will always be identified within the family as "damaged goods", because that's the only way that mom and dad can keep up the pretense that everything is fine.

Meanwhile, they obviously have no concern regarding the effects on public health in this country. When the next pertussis or measles outbreak occurs because of them parroting the nonsense that vaccines cause autism (which will certainly further decrease vaccination rates in this country), will they feel the least bit guilty? Or will mom look to "help" those moms who lost their kids to vaccine preventable diseases by becoming the lawyer that encourages those parents to sue the government, too?

Here's my unsolicited advice to the Polings:

OK, you pulled it off. You managed to tap into the financial largess of the US government (which means the rest of us are paying for this). Once you get your check, do us all a favor (especially yourselves) and just stop talking about this. Because I know that you'll never publicly admit that you were wrong, that Hannah had a genetic disease that something was bound to aggravate, and it just happened to be a fever that may have been caused by vaccination, but nobody really knows.

And I know that if you get stuck in the "pity party" and blaming others that you'll never come to truly accept and love Hannah as she is. You may think that trying to constantly trying to "fix" your daughter is the best thing you can do for her, but she will tell you later how devastated she was that you never accepted her for being her. Let go of the anger you feel, or it will disintegrate your family. The rest of us will take the extra 5 years to undo the damage you've done, and educate the American public that vaccines really don't cause autism. Just take the money and go away.

-------------------------
Addendum: Three other posts that give great background on this are Steve's, Emily's, and S.L.'s.

Primum non nocere

I was traveling all day yesterday, and didn't go online when I got home. So I missed that the verdict in the Karen McCarron case came in. As most everyone in the world with any connection with autism knows, in May, 2006 Karen McCarron murdered her child Katie by holding a garbage bag over her head until she suffocated and died. Her lawyer had argued that she was not guilty by reason of insanity, but the evidence said otherwise, as she actively tried to cover up her crime.

Karen McCarron was a doctor. A person who was trained to heal. Since at least the late 19th century, the phrase "primum non nocere" (First, do no harm) has been a common medical aphorism. The admonition is to make doctors stop and consider any harmful effects their treatment might have, and make sure that the potential beneficial effects outweigh the bad.

The last time I checked, murder was not considered a viable treatment option for anything.

The end of the trial brings a conclusion for the rest of the McCarron family who grieve for their lost child, but I am afraid that this is not the end for those who would do harm to those who are different.

Katie McCarron was loved by many, and murdered by a woman who betrayed the trust that Katie put in her as her mother, a person who was trained to heal, but chose to murder.

There is no joy in the guilty verdict. It will not bring Katie back. But perhaps-perhaps it will give some pause to those who would make videos saying that they have considered killing their offspring. Perhaps it will give some pause to those who concentrate on "getting rid of the autism" instead of loving their child.

Perhaps it will make all of us think differently when we see people disparaged, disowned, and devalued for their differences.

Where are all the autistic children of dentists?

photo credit-Conor Lawless
Creative Commons license

Once again, the purported link between mercury/thimerosal and autism is in the news. This months "Archives in General Psychiatry" contains an article which looks at the continuing increase in the reported prevalence of autism in California while the amount of mercury is declining, and there is also an accompanying commentary in the same issue.

This article and commentary were discussed by Kristina Chew. Mark Blaxill, a leading proponent of the "autism=mercury poisoning" line of thought, backpeddles somewhat without totally conceding that the theory is dead. Brett of 29 Marbles asks what it would take for either side to change their mind.

Although I ultimately look to science to inform my opinions on things such as causality, I am not above referring to common sense, which is not a bad place to start when considering what kind of studies should be done.

One of the things that has made me doubt the whole autism=mercury poisoning thing from the start are dentists, and the amalgams they place. Specifically, where are all the autistic kids who had dentists and dental assistants as parents? More specifically, where is the large group of autistics that are 35-55 years old that had dentists or dental assistants as parents?

Why do I choose that age range? For a couple of reasons. Since autism wasn't described until the 1940's or so, I wouldn't expect older autistics. Also, this period would correspond to a time when dental caries were rampant (pre-fluoridation of water), as well as a time when handling of mercury and amalgam in dental offices was very casual. Mercury and metal filings (silver and zinc) used to be hand measured into a device, which then shook them together (right at the chairside) until they became a soft "amalgam" which was then packed into the cavity in the tooth. The dentist is typically "right in your face" as (s)he packs the amalgam into the tooth.

While some people today still blame mercury fillings for the exceedingly small amount of mercury vapor that is released by chewing on amalgam fillings, no one disputes that the greatest period of exposure to mercury is when the amalgam is first being mixed together. Since the 1970's or so, dental amalgams have come in a pre-proportioned sealed container, which minimizes the amount of mercury in the air in a dental office. Also, the number of amalgams that are placed today, while still large, pales compared to the past. Fluoridation started in the U.S. in 1955, and by the 1960's started to catch on. This resulted in a lot less exposure to mercury per child.

But between the time that autism was first described and the decline in amalgam fillings being placed in children there should have been an epidemic of children identified with autism, which declined as fillings per child dropped off. There should have been an even bigger incidence in the children of dental workers (dentists and dental assistants) who were occupationally exposed on a large scale to mercury vapor.

Where are they?

There are no studies that have shown this, and I am not even aware of any anecdotes of this phenomenon happening.

Hoodwinked

And by a 7 year old, no less. I don't know if I should be happy about this or not. I was totally flim-flammed by Buddy Boy tonight.

Let me back up a bit. Buddy Boy has been getting into playing computer games, as well as games on a Game Boy that we bought about 6 months ago. I'm sure that many of you are very familiar with the concept of using "electronic bribery" in order to encourage certain behaviors (reading, doing math problems, cleaning room, etc.). Well, not being perfect parents, we also are not above using time on the computer/Game Boy in this manner. The combination of his obsession with our limiting access has made time on electronic games very desirable to Buddy Boy.


If left to his own devices, Buddy Boy would play electronic games every waking minute we let him. Obviously, being an old fart who's first computer game was "Pong" in high school, I don't think that's very healthy.

I'm the one who usually puts Buddy Boy to bed at night. We put him to bed at 7:00 PM, as he will consistently get up between 5:00 and 5:30 AM, no matter how late he goes to bed, and we want him to get a good night's sleep.

I put Buddy Boy to bed at the usual time. We went thru our usual bedtime routine, making sure he went to the bathroom and brushed his teeth, picking out what song he was going to listen to on his "boombox" all night long, tucking him in. Prior to bedtime Buddy Boy had elected to play in his room by himself, not wanting to play with me or Sweet Pea. When I left him to go and play hide and seek with Sweet Pea he was laying under his bed playing with some small squishy animal figures.

I didn't see the Game Boy, and asked him where it was. He straight faced said "I don't know, Dad". I proceeded to take 3-4 minutes to search for it in his bedroom, but couldn't find it, so just left, as I didn't want to break our routine too much.

Liz has been the one to usually take him to the bathroom later, after a couple of hours. She's taken over this duty from me, as she thinks my whispering to him at these times wakes him up and makes it harder for him to get back to sleep.

Well Liz went in to take him to the bathroom tonight, and he was laying under his bed playing on his Game Boy. He evidently had sequestered it away someplace near bedtime, and had been playing it from 7:00 PM to 9:30 PM, when Liz went in there.

Liz wasn't too happy with me.

This isn't the first time Buddy Boy has lied about something, and I certainly don't want him to make a habit out of it. But as I sit here contemplating this, I've got to think that the ability to plan out the operation, lie to my face when directly challenged, and carry it out quietly shows some real skills that could transfer quite nicely to a lot of workplaces.

Now if I can only work on some effective strategies for him to remember faces of people he's met...

(Non)Sense and Sensibility

This week, in a move that can only be described as "Out of this world", the lawyer for Lisa Nowak (the former astronaut who stalked and assaulted the girlfriend of a fellow astronaut) is laying the grounds for an insanity defense because she:

...suffered from major depression, obsessive-compulsive disorder, insomnia and "brief psychotic disorder with marked stressors," defense attorney Donald Lykkebak wrote. ...

In the court document, Lykkebak also indicates that Nowak may suffer from Asperger's Disorder. ...

Of course this is not the first time that some form of autism has been linked with criminal behavior. The Virginia shootings a year ago were a classic example. One wonders when "autistic bashing" will fall out of favor, but I guess we should expect it when there is a vocal minority in families affected by autism that uses derogatory language when referring to autistics.


Meanwhile, much more down to earth (in oh so many ways) was a story recounting how a brother of an autistic person and some of his friends just finished roller blading from Florida to Maine in the U.S. (2000 miles/3200 km) to raise funds and awareness about autism. Their group they formed is called "Rolling for Autism".

Dan Tatar (whose brother Ben is autistic) and four friends from Union College in Schenectady, N.Y. made some comments at the finish line of their journey:

..."It's not a disease; it's not an illness. It's something that a lot of people have. They're interesting people; they're great people. The support network of their families and friends is incredible. That's why these people are so successful," he said, as his brother Ben hollered "Yeah!" to the crowd. ...

One of the above stories will be picked up by major news outlets, and the other, while it had significant support from a number of individuals and groups, is likely destined to be seen by a much smaller audience. I encourage all to check out the Rolling for Autism website, and drop them (or your favorite pro-autism group) a donation. Positive voices need to be heard and supported.