Wednesday, March 31, 2010

Left Brain Right Brain is the (cough) "True Autism Community"

I know I just got done talking about these chaps but I ran across some more nonsense earlier today and couldn't resist commenting. Over at Left Brain Right Brain, Kev is pontificating about what the GMC should do to punish Dr. Wakefield for his terrible crimes. Should they make his name shorter by chopping off the Dr. or should they perhaps boil him in oil?

As I have said before, the medical community is going to have their pound of flesh from Dr. Wakefield, so I would be willing to betting they will making his name shorter. Although, if Brian Deer has a say, I wouldn't rule out the oil quite yet. After all, he is going to need something to do now that his favorite whipping boy is gone.

Anyway, Kev was rallying the troops and encouraging them to contact the GMC to make their feelings known when he said this -
You can play a part in helping to make sure that the GMC know the feelings – the anger – of the true autism and autistic community and by urging them to strike Wakefield off.
There you have it, LBRB and its audience represents the "true" autism community.

Yeah, um, OK, if you say so Kev.  I guess that means the rest of  us must be impostors or shills.  I do have one question though.   Isn't the GMC supposed to be an unbiased forum where evidence and reason hold sway?  And if so, what possible difference would the "anger" of the "true autism community" make?

I don't think I really need to point out the absurdity of Kev's statements. But I will say that when a small minority group declares that they are the "true" community and encourages their members to show their righteous anger it never ends well.

Next stop - Waco, Texas.

Monday, March 29, 2010

Left Brain Right Brain's Unprovoked Nonsense

I have found that one of the clearest signs that a blog is going downhill is when they switch from tolerating other view points to censoring dissenting opinions. When you are so sure that you have all of the answers or don't want to consider that you could be wrong, it is an undeniable sign that you need to pull your head out of your posterior section and think about what you are doing.

I am speaking specifically of the shinning example of the neurodiversity movement, Left Brain Right Brain. As I said several months back, this once decent site has been on a downward spiral and they seem to have taken a new step down the path towards irrelevance - censorship.

Even though I removed LBRB from the reading list on the side of the page for anonymously stalking a mother who was trying to help her child, I still do occasionally look at what they have to say - mostly for the amusement value (that Sullivan, he is a regular comedian). The last time that I looked in at the site, I read this post on the DAN! doctors that were being sued as part of a messy divorce.

Sullivan was at comedic best, insisting that this law suit was simply because father was lied to by the doctors in question and that the father say that he saw no benefits from the treatments. He spends a lot of time harping on a specific method of testing for the amount of heavy metal in a person's body and how the validity of the test has not been established. The coup de grace of the entire piece is when he accuses someone else of ignoring the "real questions" involved in the case.

The irony of Sullivan's statements was too much for me and I felt the need to comment. I pointing out that he ignored the context of the surrounding "bitter" divorce and the fact that the mother apparently disagrees with the father about the effectiveness of the treatments. I thought I was being at least civil in how I expressed my opinion but, like all of the comments I have left on that site in the past several months, this one came up with the "comment awaiting moderation" and went into limbo.

There the comment still sits, awaiting the blessings of whoever moderates the comments over there now. I don't think it will ever see the light of day. Sullivan gets so touchy when you point out the gaping holes in his logic.

To be honest, I don't really care that the comment wasn't published. Every site has the right to publish the comments that they choose and to not publish the ones that they don't want to. Commenting is a privilege, not a right.

The thing that I find interesting is the break from the long standing policy that the site had of publishing all comments and the fact that the apparent policy has been silently changed without any public sign of the change. The site went from a quasi-open discussion to a restricted one without such much as a whimper.  As I understand it, the censoring of contrary opinions of one of the things that LBRB complains about when it comes to the Age of Autism site.  I guess they don't notice the hypocrisy when they do what they are complaining about.

As I said earlier, one of the clearest signs that a site is going down hill is when they start censoring other opinions.  Left Brain Right Brain is definitely going down hill and at the rate they are going, they are going to hit bottom soon.

Sunday, March 28, 2010

Ari Ne'eman should not serve on the National Council on Disability

President Obama, with all due respect, you made a mistake when you nominated Ari Ne'eman to serve on the National Council on Disability. While Mr. Ne'eman has accomplished much in spite of his disability, his views on autism will prevent him from being able to fairly represent the needs of most people with autism.

Autism is a very complex disorder and people with autism have an enormous range of functioning. That is the heart of the problem. Mr. Ne'eman, and others like him, represent the very pinnacle of what a person with a diagnosis of autism will be capable of. Mr. Ne'eman appears to be able to function as well as any other non-disabled person would be able to - in spite of his autism.

The overwhelming majority of people with autism are not so fortunate.

The least fortunate of this group are locked in their own world and are completely unable to communicate with the outside world. The majority of people with autism fall somewhere between these two extremes. As you look at people who suffer from autism, one thing is clear. Most will have life long struggle to accomplish the things that "normal" people take for granted. They will have a hard time holding down a job, going to college, starting a family, being able to live on their own, or even, in some cases, being able to talk.

The problem with Mr. Ne'eman is that he feels that the disabling aspects of autism are not caused by the disorder but rather by the prejudices of society. He seems to think that if society were different that people with autism would not have such a hard time. And he is partially right, for people like him, the attitudes of society can make a large difference.

But most people with autism are not like him. If you were to spend any time watching children with autism, you would know that the disabling aspects of autism are caused by the disorder itself and not by the attitude of a neighbor down the the street.

Mr. Ne'eman also feels that evidence based medicine is somehow mistaken in thinking that therapies like Applied Behavior Analysis (ABA) can help children with autism learn. Fortunately, he is mostly alone in these opinions. There are countless children from around the country that have been helped by therapies such as ABA and almost all major health and autism advocacy organizations support the use of such therapies.

Treatments like ABA can make a large difference in the life of a child. Just ask any expert in the field whether such treatments can be effective and you will get a responding yes.

But most importantly, Mr. Ne'eman advocates against looking for the cause of autism and strongly opposes the idea of curing autism. He is quite happy the way he is and does not want to change.

How selfish of him to seek to deny others the chance to be able to do as much with their lives as he has with his.

Autism is a growing health problem that changes the lives of 1 in 110 children in this county today. At the rate it is growing, it is likely within the next ten years this number will stand at 1 in 50 children.  There need to be effective treatments for autism. We, as a country, need to find the answers to want causes this condition and to prevent it, if at all possible.

We need a cure for autism.

Mr. Ne'eman opposes these goals and thus ignores the needs of those most challenged by autism. He is not qualified to speak for their needs, he is only speaking for the needs of other extremely high functioning individuals like him.

President Obama, you might have had good intentions in nominating Ari Ne'eman, but you made a mistake. Let me put this in simple terms. If we were talking about people who were unable to walk and were confined to a wheel chair, Mr. Ne'eman would be up walking around with just have a minor limp and advocating against the use of wheel chairs.

There are other people with autism who you could nominate that would do a better job of representing the needs of all people with autism.

Thursday, March 25, 2010

Sleep...

Spring time is right around the corner and that means it is time for the second annual sleep-less-a-thon at our house.  For the past three or four weeks, my twin daughters have been up for several hours every night.   Fortunately, Baby C is a solid sleeper and has managed to get more sleep than everyone else in the house combined.

One of the (cough) fun things about identical twins is that they tend to do things at the same time or very close to the same time.  The problems with sleeping seem to be no exception.  For the first few weeks, it was Twin A who was up every night for several hours.  She, of course, wakes up her twin, who is less than pleased at being awake.  Now, it is Twin B's turn to wake up every night.  She, of course, wakes up her sister, who is less than pleased at being awake.  See the pattern?

The only think more fun than one autistic temper tantrum in the middle of the night is two, self-reinforcing temper tantrums in the middle of the night.  Like the bunny from the commercials, they keep going and going and going...   I think I may have to invite people who think that autism is just a "difference" to my house at this time of the year and let them experience the "difference" for themselves.

I have to wonder at how many of the symptoms of autism can be caused or worsened by lack of sleep.  I know that after a few short weeks of this that my thought processes are sluggish and I am having a harder time focusing or paying attention.  I can't imagine what I would feel like after years of not sleeping well - and to have the processing trouble on top of lack of sleep would only make it worse.  I think I can understand why children with autism can be on the cranky side.

Regardless, it looks like the sleepless night are drawing to an end (oops, Twin B just woke up), so hopefully the Jabberwocky will resume shortly.

Monday, March 15, 2010

Brian Deer doesn't respect the privacy of medical records?

I normally don't like to parrot what appears on Age of Autism, but this story about Brian Deer is somewhat troubling. Brian Deer might be holding onto the names, medical records, and family histories for the 12 children involved in Dr Wakefield's now-retracted study.

If you look at the "rapid responses" left to an opinion article published in the BMJ, you will see a response left by an individual calling themselves Brian Deer that says (in part) -
I know the names and family backgrounds of all 12 of the children enrolled in the study, including the child enrolled from the United States.
I think it likely that this comment was left by the real Brian Deer as he does leave comments in random places and a story about Dr Wakefield is sure to attract his attention. Furthermore, if you happened to read some of the stories written by Mr Deer about a year ago for the Times Online, you would be able to see that he does seem to have details of at least some of the participants in the study.

So, assuming the claim is true and Brian Deer has the names, medical charts, and family histories for all of the children in the study, what does that mean?

If it was my child whose privacy had been violated, I would not be happy.  I would be even less happy that it was a journalist like Brian Deer that had my child's records.

I know that in the US, it would be illegal for Mr Deer to have, much less retain, the information unless it was given directly to him by the families or the families agreed to release it to him. But seeing as how some of the the original 12 families are publicly supporting Dr Wakefield, I don't think they would have agreed to release it to him.  So if this happened in the US, the matter would likely already be in court.

But this didn't happen in the US, it happened in England.  I don't know what the medical privacy laws are in England, but I can't imagine that are so lax as to allow a journalist to have unfettered access to confidential medical records. Someone had to have released the records to him.  I don't think the Royal Free hospital would have done it, they have a strict policy against it. So I wonder who released the records and why they did it.

It is a mystery.

One thing is clear though, Mr Deer has no right to those records and should delete all traces of them.

Autism omnibus deja vu

The so-called vaccine court has ruled on the matter of vaccines causing autism and they have found, yet once again, that ....

Yawn.

Sorry about that, as I was saying, the special masters of the vaccine court have decided, once again, that there is no ...

Yawn.

Sorry, I can't seem to stop yawning, where was I ....

... no relationship between vaccines and autism.

Seriously, do these latest rulings surprise anyone?  We have the same three special masters looking at the same issues as they did last time, and it is notable when they arrive at the same decisions?  If they came up with a different answer, that would be something to talk about.

But this?  Really?

Short of the appeals court overturning one of the omnibus cases, I don't expect anything new from the vaccine court.  The rule has already been established.  Say the words "autism" and "vaccine" together and your case will be denied.  Go for a different approach and agree to call the problem something other than autism, and you may have a slim chance.  Either way, if you think your child's autism was caused or triggered by vaccines, you are most likely wasting your time in vaccine court.

The special masters have made their opinion known on the issue and autism and vaccines, and I am sure that they want to be rid of all of the remaining omnibus cases as quickly as possible.  And, in fact, that appears to be happening already.

There are a number of cases that I found - like this one, this one, this one, this one, or this one - where the case was dismissed because the statute of limitations had passed.  The basic idea here seems to be to look back in the child's history to where they show the first possible sign of speech delay.  Since speech delay can be a sign of autism, this is used as the time of onset and starts the countdown toward the statute of limitations.  If the parents did not file within the 36 months of the onset, then the statute of limitations has passed and the case is dismissed.

Simple, but effective.

The next step for all of the omnibus cases will be known in about a year when the US Supreme Court would be expected to rule on whether vaccine makers can be sued in civil court for potential defects in their products. That is, assuming the issue at the heart of the case is decided and that the case isn't delayed or sent back to the lower courts for other reasons.

Until then, there isn't going to be much of anything to talk about.

Friday, March 12, 2010

John Elder Robison owes parents an apology

John Elder Robison owes parents whose children have autism an apology.

Mr. Robison, who is best known for writing book "Look me in the eye", was recently asked to serve on the board of Autism Speaks and he wasted no time before sticking his foot in his mouth.  The shoe leather incident happened earlier this week as he was responding to a comment left on the Autism Speaks blog by Harold Doherty. Mr Doherty asked the following question -
Mr. Robison do you feel that as a very high functioning person with an Asperger’s diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?
Mt Robison responded with -
I guess I’d counter with a question of my own. What makes you think a person who cares for a disabled autistic person is better qualified to speak on their behalf than me, a high functioning autistic individual?
Caretakers all too often have their own agendas at odds with the people they supposedly care for. They want to read a paper; their charge wants to keep practicing. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person.
There are so many cases of caretakers abusing or neglecting their charges and forcing unwanted therapies on disabled people that I would not be so quick to assume caregivers should have the exclusive right to speak on behalf of the disabled.
That said, I know there are many loving caretakers out there who are truly in tune with what their disabled charges want and need. I would give considerable weight to their opinions if I were in a situation where that was appropriate.
There was more to the exchange, click on the links above to read the full comments.

Mr Doherty has responded to the comment on his site, but since the comment was directed at parents in general, I thought I would add in my two cents worth.  I posted the following response on the Autism Speaks blog but, as I don't expect them to actually publish it, I am including it below.

~~~~~~~~~

Mr Robison,

I think you mean well but your statements concerning caretakers of children with autism are completely out of line. As the father of three daughters who have to deal with autism, I can assure you that I am far better equipped to speak for their needs than you are.

I have spent untold hours working with them and helping them learn to communicate with the world around them. I have worked with their doctors and therapists to tailor their treatments to meet their specific needs. I have spent many sleepless nights reading the latest research on autism, searching for information that might help me better understand them or might suggest a new treatment that would help them better cope with the world.

I know many parents who do the same.

Autism is a disorder that encompasses a large range of functioning. From watching my twin daughters, I know that even identical twins can have different challenges from autism and the symptoms of their autism can be quite different. No two people with autism are the same, so the issues you have may or may not be relevant to all people with autism.

You don't know my children's name or any details about what their specific difficulties are. Yet you think that you, a complete stranger, might be better able to speak for my daughters needs that I would?

I find your assumptions that we caretakers "often have our own agendas" and the implication that we are selfish and take the easy way out to be insulting in the extreme. As most parents would tell you, we as a group will go to almost any length to help our children. Many of us completely rearrange and refocus our lives in an attempt to provide a better environment and future for our children. I don't think that we parents deserve any special thanks because this is what every parent should be expected to do for any child of theirs.

But we most certainly do not deserve to be called selfish or told that we don't do what is in the best interest of our children. I think you owe parents an apology. I suggest that you raise your awareness of exactly what parents do for their children because you do not seem to understand. If you did you would be working with us rather than calling us names.

Wednesday, March 10, 2010

Oxytocin and the autism anti-treatment movement

Unless you were not paying attention last month (or possibly in a comma), you were sure to notice the new study involving oxytocin and autism. In this small study, researchers demonstrated that an inhaled form of oxytocin could improve social behaviors in adults with high functioning autism. The result is very tentative but, assuming that the results can be replicated in future studies, oxytocin has the potential to be a powerful treatment for people with autism.

This is not the first study to show a link between autism in oxytocin. Prior research has shown oxytocin also can help improve other aspects of social behavior, such as emotion recognition, in young adults with autism. People with autism are known to have genetic defects on genes associated with oxytocin while others have epigentic disregulation of said genes. It has also been shown that children and adults with autism have lower levels of oxytocin in their blood.

Or in simpler terms, we have a known genetic and environmental issue, a method of detecting the problem, and a potential way to address it. And, if the current study is any indication, addressing the deficiency has the potential to improve functioning in one of the core deficits of autism, at least in some people with autism.

If you remember what I wrote a few weeks back, there is some evidence that the first deficits of autism to emerge in infants are social ones and that some of delay in acquiring other skills, such as speech, might be due to problems with social learning. What would happen if we were able to detect these problems in very young children when they are first developing and correct them? I am thinking that it would be possible to prevent other problems from developing and help the infant progress at a normal pace.

The above is complete speculation on my part and a substantial amount of work still needs to be done before any treatments involving oxytocin are even possible. But the potential is there for this to become of the first treatments to target the core problems with autism.

Who could possibly be against that?

Well, Michelle Dawson for one. As I have written about before, Ms Dawson is one of the people who feel that it is somehow unethical to try to treat autism. Try as I might, I simply cannot understand why she opposes helping children or adults with autism. But I can easily point out the absurdity of her arguments against the current study.

As I said above, the current study demonstrated that oxytocin can improve social functioning and it is the way that it demonstrated this improvement that is the core of what Ms Dawson is objecting to.

This study was not an extended study of the effectiveness of oxytocin but rather a relatively simple test of whether there was any significant effect. The researchers were giving a nasal form of oxytocin and the effects of the dose were very short lived. As a result, the test used had to be a simple yet an effective measure of social functioning.

The researchers chose a simulated ball game that was played on a computer with three other players - A, B, and C. The study participants were under the impression that the other players were real people but, in reality, they were simulated by a computer program. The way the game was played was that once a player received the ball, they had to chose another player to pass it to. That player would then in turn pick one of the other players and pass the ball to them. And so on and so forth. Each game lasted a good number of rounds (passes).

The games always started off "fairly" and the three computer players (A, B, and C) would pick another participant at random to pass the ball to. But after a few rounds, the three computer players changed how they decided who to pass the ball to.

Player A (the "good" player) would choose to pass the ball more often to the study participant while Player C (the "bad" player) would choose not to pass the ball to the study participant very often. Player B would remain neutral.

To further stack the deck, the researchers told the participants that each time a player received the ball, they would earn 2 euro. So when the participant received the ball and earned money, they then had the option of returning the favor to person who passed them the ball or of passing the ball to another player. Thus, the game was a really a test of reciprocity. As most knowledgeable people would tell you, reciprocity is one of those social skills that can be disrupted in people with autism.

The study participants were divided into three groups - a "normal" group, a treatment group, and a placebo group. The treatment group and placebo groups both contained people with autism but the treatment group received a dose of oxytocin while the placebo group received a placebo.

As would be expected, once the bias of the other players became clear, the "normal" participants strongly favored passing the ball to player A (the "good" player), presumably because A was much more likely to pass it back to them, and much less likely to pass the ball to player C (the "bad" player), presumably because C was not as likely to return the favor.

The participants in the placebo group, unlike the "normal" participants, did not show a preference for passing the ball to any other player but seemed to pass it to the other players almost equally.

However, the participants in the oxytocin group more closely resembled the "normal" group and showed a preference for passing the ball to player A (the "good" player) while excluding player C (the "bad" player).

To confirm these findings, the researchers staged a second trial with a modified game using another group of adults with autism. The participants were once again divided into placebo and treatment groups but the game was modified to remove all mention of monetary rewards. The results were again the same, with the placebo group not showing any preference while the treatment group showed a preference for player A while excluding player C.

Based mostly on this finding (and several other secondary findings), the researchers concluded that oxytocin might help restore "normal" social functioning in people with autism.

To perfectly honest, this test is somewhat simplistic and not very indicative of what oxytocin would do for social skills in general. Based on the results of this one study, we cannot generalize the finding and say that oxytocin would be a good treatment for autism.  But for what it is, this study was well done and the results are pretty solid.

Now that I have explained the game, lets return to Michelle Dawson and her opinions of the study. Ms Dawson apparently feels that the reason the placebo group passed the ball randomly in the face of biased behavior is that -
The autistic [placebo group] in contrast displayed no such selfish and discriminatory behaviour. They continued to throw the ball to the other players in equal proportion, ignoring their self-interest in favour of keeping all players equally included.
Further, subjective ratings of the other players revealed that the autistic [placebo group] did not have the kinds of biases that are routinely called hypocrisy. They did not judge C, who shared the most with B, as worse or less trustworthy than A, who shared the most with themselves.
According to Andari et al. (in press), autistics "cannot understand or engage in social situations," as evidenced by autistics' outstandingly altruistic performance in this game. It is this profound social deficit, this altruistic autistic behaviour, that was targeted for treatment.
Basically, Ms Dawson feels that the placebo group was able to understand the social situation and made a conscious choice not to "judge" or engage in "hypocrisy". These "austicis" took the feelings of the other players into account and decided to act in an altruistic manner so that no other player felt left out. Taking this argument to the logic conclusion, the treatment group had to have lost the ability to act in an altruistic manner and decided to be hypocritical and purposely exclude the other players from the game.

Since these statements are contrary to everything that we know about autism as well as the very definition of what the medical condition of autism is, I would respectfully suggest a simpler explanation to fit the facts. The reason that the placebo group acted the way they did because was because they simply failed to react to the social situation.

If you look at the results of the game in the initial rounds before the other players started showing their biases, the "normal" group was sending the ball to the other players equally. It is only once the bias become obvious that the "normal" and treatment groups started changing their actions. This is a typical - and desirable - social trait. We are more likely to respond favorably to people who respond favorably to us and less likely to act favorably to those who discriminate against us.

But Ms. Dawson would have you believe that people with autism someone have a superior grasp of social situations and consciously chose to be altruistic.

Which of these sounds like autism to you?


References

Wermter AK, Kamp-Becker I, Hesse P, Schulte-K├Ârne G, Strauch K, Remschmidt H. Evidence for the involvement of genetic variation in the oxytocin receptor gene (OXTR) in the etiology of autistic disorders on high-functioning level. Am J Med Genet B Neuropsychiatr Genet. 2010 Mar 5;153B(2):629-39. PubMed PMID: 19777562.

Andari E, Duhamel JR, Zalla T, Herbrecht E, Leboyer M, Sirigu A. Promoting social behavior with oxytocin in high-functioning autism spectrum disorders. Proc Natl Acad Sci U S A. 2010 Mar 2;107(9):4389-94. Epub 2010 Feb 16. PubMed PMID: 20160081.

Liu X, Kawamura Y, Shimada T, Otowa T, Koishi S, Sugiyama T, Nishida H, Hashimoto O, Nakagami R, Tochigi M, Umekage T, Kano Y, Miyagawa T, Kato N, Tokunaga K, Sasaki T. Association of the oxytocin receptor (OXTR) gene polymorphisms with autism spectrum disorder (ASD) in the Japanese population. J Hum Genet. 2010 Jan 22. [Epub ahead of print] PubMed PMID: 20094064.

Guastella AJ, Einfeld SL, Gray KM, Rinehart NJ, Tonge BJ, Lambert TJ, Hickie IB. Intranasal Oxytocin Improves Emotion Recognition for Youth with Autism Spectrum Disorders. Biol Psychiatry. 2009 Nov 6. [Epub ahead of print] PubMed PMID: 19897177.

Gurrieri F, Neri G. Defective oxytocin function: a clue to understanding the cause of autism? BMC Med. 2009 Oct 22;7:63. PubMed PMID: 19845973; PubMed Central PMCID: PMC2770459.

Gregory SG, Connelly JJ, Towers AJ, Johnson J, Biscocho D, Markunas CA, Lintas C, Abramson RK, Wright HH, Ellis P, Langford CF, Worley G, Delong GR, Murphy SK, Cuccaro ML, Persico A, Pericak-Vance MA. Genomic and epigenetic evidence for oxytocin receptor deficiency in autism. BMC Med. 2009 Oct 22;7:62. PubMed PMID: 19845972; PubMed Central PMCID: PMC2774338.

Modahl C, Green L, Fein D, Morris M, Waterhouse L, Feinstein C, Levin H. Plasma oxytocin levels in autistic children. Biol Psychiatry. 1998 Feb 15;43(4):270-7. PubMed PMID: 9513736.

Monday, March 8, 2010

Vaccine injury at the US Supreme Court


Flickr Photo by dbking
A vaccine injury case is being heard by the US Supreme Court and it has the potential to change how the vaccine program works in this country. The primary issue in the case is whether vaccine makers can be sued directly in civil court for defects in their their products.

As matters stand now, if a person thinks they have been injured by a covered vaccine, they are required to file a claim with the National Vaccine Injury Program, otherwise known as vaccine court. This is a special venue that was created by the National Childhood Vaccine Injury Act of 1986 and was meant to provide a no-fault, swift, flexible, and less adversarial alternative to the traditional court system.

Under this system, the Department of Health and Human Services (HHS) takes the place of the vaccine manufacturer as the counter party and responds to claims of injury from vaccine.  A claim is handled in one of two ways. If an injury occurs within a certain amount of time after the vaccine is administered and is on the Vaccine Injury Table, then the assumption is that the vaccine caused the injury and it is up to HHS to prove that it wasn't.  If an injury does not fall on this table, then it is up to the person filing the claim to prove that the injury was more likely than not caused by the vaccine. The exact method of proving this varies, but normally requires showing a biologically plausible mechanism whereby the vaccine could cause the injury as well as showing a relationship between the vaccine being administered and the injury.

If all goes well, a person will file a claim, the claim will be quickly processed by the vaccine court, and, assuming the injury was found to be caused by the vaccine, the person will be compensated for their injury. But what happens if a person is not satisfied with their award or if the court rules against them?  The ruling can be appealed to the U.S. Court of Federal Claims but if the appeal is rejected, or if the person so chooses, they can take their claim to civil court and file suit directly against the vaccine manufacturer.

At least, that's the theory. In practice I don't think anyone has ever successfully brought a claim against a vaccine manufacturer in civil court because of how the National Childhood Vaccine Injury Act has been interpreted by the courts.  This brings us to the current case.

The case before the Supreme Court is Bruesewitz v. Wyeth and at issue is whether vaccine manufacturers are liable for defects in their products or failing to take action to improve the safety of their products. From SCOTUSBlog -

Title: Bruesewitz v. Wyeth
Docket: 09-152
Issue: Whether Section 22(b)(1) of the National Childhood Vaccine Injury Act of 1986 — which expressly preempts certain design defect claims against vaccine manufacturers “if the injury or death resulted from side effects that were unavoidable even though the vaccine was properly prepared and was accompanied by proper directions and warning” — preempts all vaccine design defect claims, regardless whether the vaccine’s side effects were unavoidable.
In this case, the parent say that their daughter Hannah suffered a series of seizures after receiving the third dose of the DTP vaccine in 1992. She was later diagnosed as having a residual seizure disorder and developmental delay. In April 1995, her parents filed a claim with the vaccine court alleging that it was the DTP vaccine that caused the injury and asking for compensation.

One month prior to their filling, HHS removed "residual seizure disorder" from the vaccine injury table for DTP which shifted the burden of proof from HHS to the family. When the case was finally heard seven years later, in 2002, the special master hearing the case rejected the parents' claims because they failed to prove that the DTP was responsible for their daughter's injuries.

Hannah's parents rejected the finding and filed suit in civil court on the grounds that the vaccine maker knew that the vaccine was problematic, knew that the specific vaccine lot caused many injuries (a "hot" lot), and had a safer vaccine available yet failed to bring it to market. The vaccine manufacturer, Wyeth, asked for, and was granted, summary judgment on the grounds that the National Childhood Vaccine Injury Act granted the company immunity from being sued for defects in their vaccine.

The parents appealed the ruling to the Third Circuit court where the summary judgment against them was upheld, which brings us to the case before the Supreme Court.

The issue before the court is whether Congress, when it passed the National Childhood Vaccine Injury Act, intended to grant vaccine manufacturers blanket immunity from being sued for defects in their products. Was the vaccine court meant to be the sole way of recovering damages from injuries caused by vaccines?

Be aware that I am oversimplifying the issue somewhat and there are other issues that I am not mentioning.  The documents in the case are well over a hundred pages long and go into greater detail than I am able.  If you are interested in the full details, I suggest reading the briefs that are referenced above.

I would like to highlight one other aspect of the case though.  There is another case, Am. Home Prods. Corp v. Ferrari, where the Georgia  Supreme Court ruled in a different way from the 3rd Circuit.  In this case, the Georgia court ruled that vaccine manufacturers do not have automatic immunity and that each case must be decided on its own merits.

The Georgia ruling only applies in the state of Georgia, and the case was dismissed by the plaintiffs before it could be appealed to the US Supreme Court so it is unclear what the precedent of this ruling is.  But the US Supreme Court may have decided, in part, to hear the current case to resolve the difference of opinion between the Georgia Supreme Court and the 3rd Circuit.

Depending on how the US Supreme Court decides the case, there could be far reaching consequences.

The first possibility, and the least satisfying, would be if the court ruled only on the specifics of the current case and did not address the broader issue. If this happens, the split between the 3rd Circuit and the Georgia Supreme Court would stand and the underlying issue would remain unresolved.

The next possibility is that the court will find that vaccine manufacturers cannot be sued for defects in their products in civil court and that the vaccine court is the only venue for such claims. This would mean that vaccine manufacturers would effectively have no liability for damages caused by their products since they have no part in the vaccine court nor do they pay the damage awards themselves - these are paid for by a surcharge on every shot.

I don't like this option and I think that most people can agree that removing the possibility of liability from a six billion dollar industry is not a very good idea. One of the checks that keeps companies honest is the threat of lawsuits and if those are removed I think the results would not be good.  And when you combine the greater potential for problems with the fact that vaccines are increasingly becoming mandatory, I think you can see that there would be an inevitable backlash against the system.

The other possibility is problematic as well. If the court rules that vaccine makers can be liable for defects in their products, then there will be a huge number of lawsuits filed. Remember the 5,000 or so claims in the autism omnibus that are still pending in vaccine court?  If vaccine manufacturers are liable, I would be willing to bet that all of these claims would jump to civil court and create a large mess for these companies.

On the flip side here, it would be interesting to see what the discovery process, something that is not available in vaccine court, would turn up from these companies. I am positive that they have researched the autism-vaccine connection and it would be most interesting to see what they have found.

Regardless of the decision, one thing seems certain.  The current vaccine court system does not appear to be working all that well.  Claims are not handled in a quick manner (there is a backlog of about 7,000 cases) and the table of vaccine injuries is not being maintained well.

But, more importantly, it seems that some of the participants in the process are more interested in protecting the vaccine program overall than they are in awarding compensation to children injured by their shots.  That is how we get results like the one in the Bailey Banks case where the special master came up with the absurd notion of a "non-autistic" form of PDD-NOS to avoid saying that a vaccine lead to autism (hint PDD-NOS is, by definition, a form of autism).

I honestly can't say which way this case is going to go, but it should prove to be interesting.

Saturday, March 6, 2010

Obsessions for Clay


Flickr Photo by waI.ti
I am getting a strange sense of deja-vu as I write this, but, if you disagree with someone's opinion, how does a rational person go about handling it? Do you sit down and calmly discuss the difference of opinion? Perhaps if you still don't agree you engage in some ever-so friendly name calling. As the last resort, I think most rational people will just come the realization that agreement simply isn't possible and move on - not everyone is going to agree.

Or, if your name happens to be Clay, you spend your time finding new and entertaining ways of attempting to carry on a discussion with someone who no longer cares to talk to you. Isn't there a word for this type of behavior?

Yes, this gentlemen is at it again, this time with the interesting argument that this object of his obsession has "refused to acknowledge when people prove superior factual points" and therefore must be accepting monies from sources unknown to continue to hold onto his ideas. So, as the reasoning goes, the obsessor feels that it them becomes his business how the obsessee supports themselves.

I frequently find myself wondering who is paying people to disagree with me. It happens so often that the person making these payments must be pretty well off to still have any money left. But, with any luck, I'll be able to bankrupt them soon.

Clay, give it a rest already, will you? You need to find a new hobby because this one is just getting embarrassing.

P.S. The number you will want to call is 1-800-NO-STALK, they will be able to help you with your "problem"

Friday, March 5, 2010

DAN doctors sued - aka divorce gets messy

The Chicago Tribune is at it again, pushing yet another article in its "unbiased" coverage of alternative treatments for autism in its "Dubious Medicine" series of articles.

The title of the story, "Doctors sued over ‘dangerous’ autism treatment", tells you what you are supposed to think.  It tells you that some "dubious" doctors are being sued for their unethical and experimental treatments of autism.  The story is gripping from the get go - a father, James Coman, is suing two doctors and a testing company, alleging that they harmed his son with "dangerous and unnecessary experimental treatments."

But as I read the story, I realized that some of the plot just didn't make sense.  If these treatments were so horrendous and caused such harm to his son, why did he agree to them in the first place?  Did the father initially agree to these treatments only to change his mind later?

I soon found part of the answer included in the last paragraph of the story -
The treatments Coman's son received are also the subject of a bitter divorce and custody battle between Coman and his wife. She has been a proponent of the therapies for the boy, according to divorce court records.
Oh.

Now the story is starting to make a little sense.  Divorces, even the run of the mill ones, can get a little dicey and here we have one that is being described as "bitter".  Anyone see War of the Roses?

But even considering the divorce, things still don't quite add up.  If you read the story, you would see that this isn't the first time that this family's struggles have appeared in the Chicago Tribune.  The father's side of the story and his beef with the doctors has been covered twice before.  And, according to these stories, this isn't the father's first action against these doctors either.  He claims to have filed complaints with the state medical boards sometime last year.  I guess that didn't work out for him so now he is suing instead.

Why is the Chicago Tribune giving so much coverage to this "bitter divorce" and the father's complaints against the doctors?  If these treatments were so horrible and these doctors as terrible as the suit makes them out to be, wouldn't other parents be lining up to complain?

In his lawsuit against the doctors, Mr Coman alleges that his son "suffered bodily injury" and "has sustained injury to his health, strength, activity, and cognitive functioning, all of which injuries have caused, and continue to cause, A.J. mental, physical, and nervous pain and suffering."  And yet, in the earlier articles, he describes his son as "a playful, funny and outgoing 7-year-old".

He also say that his son "would have progressed developmentally without any medical treatments."

Oh.  He's one of those.

I don't know if Mr Coman was only talking about "bio"-medical treatments or he is talking about other "medical" treatments such as ABA, but I do know one thing for certain.  It is impossible to know where his son would be at today without treatment.  To be in line with what his court filings have said, Mr Coman must believe that his son would be further along than he is if he had not been treated.  And yet, he describes him as "playful, funny, and outgoing".  Does that sounds like the average 7 year old with autism to you?

Then there is the matter of when these treatments started.  In his complaint, Mr Coman says that they started almost six years ago, in April 2004, when his son was two years old.  Has he been fighting his wife about this for six years now?  Or, as I suspect, have his concerns only surfaced after he and his wife started getting a divorce?  If Mr Coman though these treatments were hurting his son, why didn't he act sooner?

I think the real story here is much simpler than the Chicago Tribune is making it out to be.  I think the title of the story should have been something like "Divorce gets messy; father sues doctors" - that would have been closer to what appears to be going on.  Having a child with autism can stress even strongest marriages, it is no wonder than it could cause one to end badly.

Wednesday, March 3, 2010

Michelle Dawson writes a letter

Evidence-based medicine is the idea that all medical decisions should be based on the best scientific evidence that is available.  The concept is really very straightforward. You take the results that research has provided, rank them according to the quality of the information, and use that ranked evidence to decide what the best course of treatment is.

The important thing to note here is that a treatment doesn't have to be proven beyond all possible doubts in every possible scenario before it can be used - it just has to be shown to be applicable to the case at hand and have enough evidence that says it is more likely than not to work.

In a way, the name says it all. You base your medical decision on what has been shown to work, in other words evidence-based.

As easy as that concept is, some people seem not to understand it, especially when it comes to autism. As it stands now, there are very few treatments that have been shown to be effective in helping people with autism. There are many different things that are used in and attempt to help people (especially children) with autism  but most of these things do not have a solid evidence base behind them. I am not saying that these treatments can't or don't work but rather that they fall outside what is considered evidence-based medicine - they would be considered alternative medicine.

One of the few treatments for autism that does have a solid evidence base is ABA (Applied Behavior Analysis).   While it is not guaranteed to work for everyone, the available evidence shows that it can be an effective tool to help teach children with autism and is almost universally recommended.

That is, with the exception of the universe of Michelle Dawson.  As I have pointed out before, Ms Dawson has a real problem with ABA. She seems to have an almost irrational obsession with proving that ABA is somehow unethical or immoral to use on children with autism. She would tell you that she has ethical concerns and that there is very little evidence that ABA works.  However, Ms Dawson is almost universally alone in her opinion.

With that in mind, consider a letter that Ms Dawson wrote to The Lancet in rebuttal to a study1 published late last year. In this letter2, Ms Dawson attacks the evidence cited in the study to support the assertion that ABA is "highly effective". She dismisses three of the cited works as not studying ABA and says that another didn't study what it says it did.  This leaves, in her opinion, only one small study as the entire evidence base for ABA which leads to the conclusion that -
"the claims made by Levy and colleagues, with respect to intensive ABA-based programmes for autistic children, have no basis—either in the review they cite or in any other published study."
Open and shut case - ABA isn't evidence based - so says Michelle Dawson. We should all stop using it now and rejoice that we have seen the error of our ways, right?

Wrong.

The authors of the study responded3 to the letter. They say that Ms Dawson is correct about the one cited reference - it did not do what it said it did. However, they "respectfully disagree" with her assertions about the other three studies and point out that they did in-fact study ABA. They go out to point out that there were five additional studies that they did not cite directly because of space limitations and that brings the total to "only" nine randomized trials that support the effectiveness of ABA.

Remember when I mentioned above the quality of the information? Randomized trials (when done correctly) are considered some of the best evidence available. To put this into perspective, most issues are considered "proven" when they have two or three good randomized trials.  Here there are nine supporting the conclusion that ABA is effective. And, as the authors go on to point out -
In addition to these trials, a host of other studies that used rigorous and sometimes not-so-rigorous quasi-experimental designs point to the efficacy of ABA-based methods, such as discrete trial training, pivotal response training, and teaching in functional routines, either alone or in combination, in improving adaptive behaviour, language, and in some cases socialisation of children with autism.
In other words, the response to Michelle Dawson's letter was an unequivocal "what do you mean there is no evidence?"  Kinda makes you wonder what Ms Dawson is talking about. Perhaps she should reconsider the evidence.

But don't take my word for it, the text of the letters are freely available on The Lancet's site (free registration required), go read them for yourself.


References

1: Levy SE, Mandell DS, Schultz RT. Autism. Lancet. 2009 Nov 7;374(9701):1627-38.
Epub 2009 Oct 12. Review. PubMed PMID: 19819542.
doi:10.1016/S0140-6736(09)61376-3

2: Dawson M, Gernsbacher MA. Effectiveness of intensive autism programmes.
Lancet. 2010 Feb 27;375(9716):722-3. PubMed PMID: 20189018.
doi:10.1016/S0140-6736(10)60299-1

3: Mandell DS, Levy SE, Schultz RT. Effectiveness of intensive autism programmes
- Authors' reply. Lancet. 2010 Feb 27;375(9716):723. PubMed PMID: 20189020.
doi:10.1016/S0140-6736(10)60300-5

Monday, March 1, 2010

Do aspies understand autism?

If you have a child with autism, you know how much trouble it can be to go out in public with your children. It isn't just that your child can misbehave or have meltdowns (as can any child) but rather the constant looks that you get as your child stims or does other things that are out of the ordinary.  Even on the good days, it can be very wearing to have your parenting skills constantly called into question by looks and words.

Then there are the days that aren't so good. Days where, despite your (and your child's) best efforts, things don't go as well as you would like. If you are lucky, you will find yourself in a situation that you can exit quickly. If you are not lucky, well, it can get very ugly.

But as I said, if you have a child who has autism, you already know and understand this very well. And chances are, if you see another child doing something strange in public, you are not as quick to judge.

Unfortunately, most people are not quite so understanding. There have been many examples latest such as mothers getting kicked off planes or being ordered out of restaurants that demonstrate that even moderate behaviors are not well tolerated by the general public.

These are not isolated incidents. But more importantly, if you look at the sort of comments that these stories gather, they are mostly of the "bad parent" sort where the children's misbehavior is not blamed on the autism but rather is blamed on bad parenting skills.

But such is life when your children have autism. Most people are simply not going to be able to understand what it is like until they have experienced autism first hand. The good (and bad) news is that, at the rate autism is growing, there is going to be a lot of understanding going around in the decades to come.

What is completed unexpected, at least to me, is when the people who should know better don't get the point and join the general chorus in blaming the parents. I am talked about the "aspies" who claim to have a form of autism and yet seem to be unable to understand the difficulties that it can cause.

Take for example this thread on wrong planet where the poster is complaining about the actions of a father -
Some Dad came back with his son, and asked if we could refill his cup of ice cream cause he dropped it.
Now, actually we have to, or else they'll complain, but we gotta push the illusion that we won't, or they'll all be irresponsible...at least more so than they already are.
Anyway, the guy said "sorry about that; my son's Autistic".
Right there...I wanted to smack both him and his son. His son looked to be about 12 years old; and no, for those wondering, he was in no way low functioning; he was at the functioning level I was at age 12; definitely HFA.
Now, I know we have lousy coordination skills, but geez....he couldn't hold a freakin' cup of ice cream? And he had to use Autism as the reason for it?
I found that very insulting; and no, I didn't say "so am I"..it wouldn't have been professional. 
Now, does any parent out there have a problem picturing what happened?

The child knocked over his ice cream cone - most likely due to some restricted pattern that they do - and the father, who has had to endure countless dirty looks, decides to skip all of the verbal jabs and says flat out, "sorry about that, my son's autistic".

Most people on the other end of that comment will realize that the father is basically acknowledging that he doesn't want to be asking for another ice cream cone and the situation isn't what he would like. Most people would realize that this is a short way of saying that there are other issues here and that he is doing the best he can to deal with a bad situation.

If you have children with autism you know how these things happen.

My children are (almost) always well behaved in public. But if we run across a store that sells rubber ducks or flowers or if a cup of water gets spilled, look out, it can get ugly (if we ever go into a flower shop that sells rubber ducks and a bucket of water spills on the floor the world just might come to an end).

We know that our children don't want to act out in this way but that they can't always help it. So we go out of our way to avoid these situations. But sometimes, things happen that are out of our control and then there are issues. This is where it would be nice for there to be some acceptance and understanding that there are are issues that we are trying to work through - issues that are directly caused by autism.

But this gentleman on wrong planet, an adult who says he has a form of autism, he has no understanding nor any acceptance. He takes one look at the situation and judges that the problem isn't the child's autism. He seems to feel that autism is being unfairly blamed to cover the father's poor parenting skills. And for that matter, most of the other people commenting on the thread seem to feel the same way. There are a few voices of reason, but for the most part the comments are hostile to the father.

Where is the understanding of the problems that autism can cause? Where is the acceptance?

I am used to "typical" people jumping to these sorts of conclusion as they simply don't understand but I would have thought that "aspies" would know better.

I guess I was wrong.