Scientists Should Watch Movies

From the who-thought-this-was-a-good-idea-department comes a potential new form the flu vaccine.  The new experimental shot is a type of attenuated vaccine where a live, but weakened, form of a virus is contained in the shot.  There are other vaccines like this and this approach isn't new.

What is new is the way that the researchers weakened the virus.  They used genetic engineering to produce a virus that "contains thousands of genetic alterations" and the result of these alterations is such that the virus does not replicate well.  So, the theory goes, you have the complete virus - which will generate a stronger immune response - but in a form that shouldn't be able to cause the flu or spread.

OK, who thought the idea of taking a virus that has a long history of mutation and genetically altering it in "thousands" of places was a good idea?  Don't these researchers read or watch movies?  Don't they know what happens (at least in Hollywood) when well-meaning researchers genetically alter a virus?  Its a good think that they weren't blissfully ignorant or tempt fate at the same time, as that would really clinch the deal.

Oh wait -

"It's unlike anything nature ever evolved," says Steffen Mueller, a virologist at Stony Brook University in New York, whose team tested the vaccine in mice.

Well, the only way it could be worse is if they made some sweeping pronouncement that it was safe ...

"It's an interesting approach to flu vaccination and is certainly likely to be safe," says Sarah Gilbert of the University of Oxford.

Uh-oh, time to run for the hills?

Real Guys Think

Just when I thought the pro-vaccine rhetoric couldn't get any worse.

First it was the denial (vaccines are 100% safe), then it was the overstate-the-science (no evidence of harm), then it was the insults and the 100,000-shot-Offit, but now vaccine advocates have sunk to a new all-time low.

This new low is a social media campaign that is being promoted by Left Brain Right Brain and the Autism Science Foundation that attempts to appeal to the inner caveman in all guys.

The name of the campaign is "Real Guys Immunize".

I kid you not.

This new campaign was created "in 24 hours" by attendees of a conference, and it shows.  Just in time for fathers day, this campaign is a crude attempt to appeal to the desire to be macho in all men.  The message is very simple, as it says on their website -

Hey there, big guy! If you're a Real Guy who cares about your family's health, then this campaign is just for you. On this site you'll find tips about immunization, answers to questions about vaccines and tools for taking action. Dads have a vital role in protecting families and we're here to help you learn about protecting you and your family from vaccine-preventable diseases.

As is blatantly obvious, the message here is that if you want to be a "real" guy and a good father, you will immunize your children. And if you don't, well I guess that makes you wuse and a bad dad.

On behalf of all males with a brain, I have to say that I am offended.

Important medical decisions, like immunization, should be made based on medical information and the specific facts of your child's situation. Sure, vaccines are important and do safe many lives each year.  But at the same time, there are times when vaccines aren't a good idea either.

To make an important decision like this you need to understand the issues, the benefits, the risks, and, most importantly, how these factors apply to your child's specific situation.  What you don't need is a an advocacy group attempting to goad you into blindly following their lead by telling you that you aren't a "real guy".

All of the "real" guys out there know better than to respond to name calling and peer-pressure.  All of the "real" guys should know that is is far more important to do what is in the best interest of your child rather than to blindly adhere to a one-size-fits-all campaign like this.

On in other words, real guys think.

Watch Out for Biased Science

One of the problems you run into when researching autism on the Internet is skewed and biased reporting of scientific subjects. There are too many sites that present information from their own biased viewpoints and ignore inconvenient facts that get in the way of how they want to look at the world. You always need to consider the source of anything you read (that goes double for what you read here).

One of the worst offenders of late has been Left Brain Right Brain and their obsession to prove all things biomedical wrong. Take for example this recent post Study Finds Supplements Contain Contaminants that starts off with -

A story in the New York Times by Gardiner Harris discusses the results of a Congressional investigation on dietary supplements. Many were found to be contaminated with heavy metals and/or pesticides:

Right off the bat, you get the impression that we are talking about "dietary supplements". When it comes to autism, the phrase "dietary supplements" usually refers to vitamins, minerals, and other products (such a probiotics) that are designed to help support bodily functions.  And the first impression is that a congressional investigation found that these supplements are contaminated with heavy metals or pesticides.

Unfortunately, that impression is wrong and I will get to why in a moment. The post on LBRB continues with some highly selected quotes from the report, and then adds this about the Kirkman recall earlier this year -

Earlier this year, Kirkman Labs (who markets their supplements towards the autism parent community) was found to have a number of supplements contaminated with antimony.

And there you have the tie back to autism - dietary supplements are contaminated, Kirkman had a contamination problem, therefore dietary supplements in general can be dangerous.

But here is the rub - the congressional report did not look at companies like Kirkman that make what amount to specialized vitamin products. Instead, the report dealt with "herbal dietary supplements" - specifically chamomile, echinacea, garlic, ginkgo biloba, and ginseng - and how they are marketed to elderly consumers. The report found that some companies were making illegal claims about what their products would do and that some products had detectable levels of undesirable heavy metals and/or chemicals. If you want the exact details, go and read the report yourself.

If you were paying attention to the list of "supplements" tested, you would have noticed that none of them are common supplements given to children with autism (as far as I know).  You might have also noticed that most of them are grown.  Hmm, where do you think plants would pick up heavy metals or pesticides?  If the report had looked at contamination in raw garlic in the grocery store, what do you think the  results would have been?  And the bonus question, why do many people try to buy organic products for their children with autism?

If you looked a little closer at the report, you would have also noticed that vitamins and mineral "supplements" are strangely absent from the list of products tested. There was not a single vitamin tested nor was there a single product from Kirkman. Yet, the post on LBRB ties the two together and implies that companies like Kirkman have regular contamination problems.

Facts, mean ideology, ideology, ignore facts.

If you want a less biased presentation of this report, I would suggest this post on Julie's Health Club.

In the meantime always consider the source.

Not Everything is a Conspiracy

Perhaps the largest problem in the autism world is a lack of trust. There are a number of factions out there in the community, and it seems like none of them trust the others.

There are parents who feel that vaccines cause autism, and they don't trust the medical establishment. There are parents out there who feel that autism is a gift, and they don't trust anyone who thinks that autism is a disease. And then there are the rest of the parents who don't really care about ideology but are just trying to help their children overcome their autism, they don't trust people with an ideological axe to grind.

There are high functioning adults and adolescents who feel that autism is their identity, and they too don't like anyone who says anything bad about autism. Then there are the adults with autism who are actually disabled by it, they tend not to trust people trying to whitewash autism. And then there are the rest of the lower functioning people with autism, and we don't really what they think because they lack the skills to speak for themselves in society.

Then there is the medical community, and they don't trust anything that didn't pass the popularity contest and get published in a journal.

And of course, then there is everybody else who doesn't fit into one of the nice, tidy categories above. But the point is most of these groups don't don't trust the other groups. Sometimes this lack of trust can be reasonable, while other times, it is not.

Take for example, a recent post on Age of Autism concerning the lead author of a recent genetic study - "Scherer of Nature Autism Gene Study Fails to Disclose Pharma Funding As Competing Interest".  The point of the post is that the lead author on the study holds the "GlaxoSmithKline-CIHR Pathfinder Chair in Genetics and Genomics at the Hospital for Sick Children and University of Toronto" and, since vaccines cause autism, this relationship should have been declared as a conflict of interest in the paper - at least according to AoA.

The only problem is that this paper had nothing to do with vaccines, gut problems, or any environmental factor that could be involved in causing autism. The study in Nature was about rare genetic variants that might be linked to autism. This paper really had no relationship to vaccines whatsoever and yet AoA still jumped on the researchers simply because they published on autism and possibly had funding from a vaccine maker.

It would be easy enough to dismiss this post as the entire premise is rather flimsy, but I think it might be more useful to take a step back and ask why AoA published it at all. I believe the problem is, quite simply, a complete lack of trust in the medical profession and the pharmaceutical industry.

I can understand why this community would have their doubts about companies that make vaccines, but at the same time, most things are not going to be a conspiracy to cover up a possible relation between vaccines and autism. This was a pure genetics study and nothing in it precluded a possible role for vaccines in causing autism, yet it was still denounced because of a tenuous tie to a vaccine company.

Maybe it is time to put down the ideology and stop looking for a conspiracy in everything.

The Future of Autism Genetic Studies (Humor)

I think this comic was written about genetic research into autism.  Even after countless large genetic studies have largely come up empty, we still hear the "autism is genetic" line.  Maybe it is time to put down the twin studies and look somewhere else?



(From Saturday Morning Breakfast Cereal)

Shh, A Restricted Diet Might Help Psychiatric Diseases

Did you know that trying dietary modifications to help treat mental health issues might not be as crazy as it sounds? Well, that is unless you are suggesting it at a potential treatment for autism. But, unlike last month's sensational headlines based on research presented at a conference, this study is one that you probably won't see in the headlines.

The reason you won't see this study in the headlines is that it does not deal with an exciting new disease like autism but instead looks at an older, less exciting condition, schizophrenia.

In this study, researchers from John Hopkins School of Medicine looked for evidence that individuals with schizophrenia had an increased level of antibodies against casein (the protein in cow's milk). While I don't want to get into a discussion of the various types of antibodies and how they relate to food allergies and/or intolerances, I did want to point out that the researchers took a different approach than is typical and looked at IgG rather than IgE antibodies.

The researchers did find a large, significant relationship between these IgG antibodies and schizophrenia. Or, as the researchers put it -

In both [schizophrenia] groups, we found elevated IgG to casein proteins, particularly to whole casein and the alpha(s) subunit (p

The elevated IgG and unique patterns of antibody specificity to bovine casein among diagnostic groups provide a rationale for clinical trials to evaluate efficacies of dietary modifications in individuals with neuropsychiatric diseases.

Let me put it in even simpler terms. If you have an elevated level of IgG antibodies against a specific food protein, it might not be a bad idea to try eliminating them from your diet. And, if you have a mental health condition that has a strong association to these antibodies, perhaps there might be something going on that is worth investigating.

You might be asking yourself what this has to do with autism, and the answer is simple. Autism and schizophrenia may be two sides of the same coin. Many of the areas in the genome that are associated with autism and also associated with schizophrenia and there are theories that these two conditions are in fact just opposite ends of a developmental spectrum. In other words, if you have too much of some chemical or duplications in a genetic region, you may get autism. If you have too little or deletions in the same region, you may have schizophrenia instead.

On a more personal level, this finding is important to me because my twin daughters had an extremely high level of IgG antibodies against casein. This antibody level was one of the reasons that we tried a restricted diet with them, a diet with which we have had good results.

Now imagine what would happen if researchers looked looked for similar antibodies in other children with autism and targeted their dietary interventions at the children who had a biological basis for trying the diet.  Instead of a study that excluded children with milk or wheat allergies, we might instead have one that tried eliminating casein when there are antibodies against casein or gluten when there are antibodies against gluten.  Perhaps that would finally give us a better answer to whether a GFCF diet can help children with autism and who it might help.

Wouldn't that be something?

Remembering Autism's History

In this month's issue of the journal Pediatrics, there is an excellent article entitled "Autism in 1959: Joey the Mechanical Boy" that talks about part of the history of autism.  It talks about how, not that long ago, the predominate causation theory of autism was that it was something that happened to children because of cold and uncaring mothers.  This was known as the refrigerator-mother theory of autism and was thankfully debunked many years ago.

While I  like to think that we have come a long way since then, I was recently reminded that some people still seem to think that autism is something that a parent does, either intentionally or unintentionally,  to their children.  To those people I would have to say, well, you really need to spend some time learning of what you speak.

It was nice to see the an article in a mainstream journal like Pediatrics taking the theory to task and putting it in its proper historical perspective.  But more than that, the author of this article points out that some of the parental distrust of the medical community might be able to be traced back to these earlier theories of autism.  Here are a few excerpts from the article that I found to be particularly worthwhile -

For many in the autism community, the popularity of the refrigerator-mother hypothesis before the 1970s continues to be remembered as an example of what might be called "the tyranny of expertise"—the danger of giving professionals too much power. ...

The most obvious legacy of the refrigerator-mother saga has, thus, been a willingness to question medical authority. This questioning reflects, of course, a broad social trend not limited to autism: patients since the 1970s have increasingly sought greater participation in decision-making in almost every domain of medical practice, both conventional and otherwise. Every physician who works with autistic children has encountered the formidable array of restriction diets, vitamins, and other alternative "biomedical treatments" embraced by many parents for autism despite a lack of evidence from controlled trials. The coalescence of the antivaccine movement around autism has become especially polarizing, pitting parents against one of the most valued tools in the pediatric armamentarium to promote child health.

Yet, focusing on the theme of antagonism obscures the positive contributions made by many parents to research and treatment approaches in autism. It was, in large measure, thanks to parents that the refrigerator-mother paradigm finally collapsed. ...

At a moment in time when the polarization over vaccines has created a deep rift between many parents and professionals, it is worth viewing today's conflict from the vantage point of history. Forgotten for the most part by physicians, the memory of the refrigerator-mother explanation of autism has fundamentally shaped the autism community. It is a story that continues to stand as a warning to the danger of shutting out the voices of parents in the name of a persuasive theory.

I wish this article were open access as I think it is definitely worth reading the whole thing and I have to give Pediatrics credit for publishing it.   If this is a sign of things to come then maybe, just maybe, there is a chance that the autism wars will end in the not too distance future.

Astroturf Turns Ugly

Less than a day after I write about the new "The Thinking Person's Guide to Autism" blog, they go and prove right with their very first post.

If you remember (or read), last time I was questioning the site's stated mission of being a "trusted, accurate, and friendly" source that was "not interested in negativity".  I was being a little flippant in what I was saying but the general point was that you can't just claim to be these things - you have to earn it.  I was also skeptical because of the people who were promoting them.  It is unfortunately one of life's truisms that can you tell a lot about people from the company that they keep.

Well, if the very first post on their site is any indication of where they are headed, they have proved me right.  The post is called "Identifying and Avoiding Autism Cults", and here is an excerpt to give you a taste of what the post is like -

I wish someone had given me this frank advice after our son's diagnosis, and prevented my husband and me from becoming one of those frustrated, susceptible post-autism-diagnosis couples, had helped us avoiding falling in with a moderate autism cult, Defeat Autism Now! or DAN!.

That's right, the "informed decisions made with love" site comes out slinging mud by calling a large segment of the autism world a cult.  You may agree or disagree with DAN! and how they attempt to help children with autism, but I don't think that anyone would calling a group of people attempting to help their children a cult is being friendly or non-negative.  As for the main point of the post, well, I guess they don't really care about accurate or evidence based either.

Muddled Monday : Church and Astroturf

Flickr photo by nycbone

Monday tends to be one of more "interesting" days of the week.  People have had time to sit around and noodle over the weekend and seem to feel the urge to say the darnedest things on Monday.  Today was no exception, so I thought I would share two of more entertaining "huh" moments of the day.

The first (and funniest) item comes from the autism blog at about.com where Lisa Jo Rudy talks about how science should trump personal experience when it comes to dealing with autism -

It's no small task to sort through the crap (and the contradictory studies) to make smart decisions for a child with autism. And personal experience will always color our choices. But hopefully most of us will take a moment to review the evidence before assuming that our personal experience is sufficient to fully understand the causes, treatments, and science of autism.

OK, fair enough. You do have to consider the fact that what you think you saw might not have actually happened and that the scientific method does yield more accurate results. But then in the comment, she goes on to say that -

Nor am I hopeful that we will suddenly discover a key to “recovery” – especially since, in the vast majority of cases, I don’t think people with autism are injured (and so they have nothing to recover FROM).

This doesn't strike me at a particularly scientific statement.  I can't help but wonder if the source of the statement isn't other peoples opinions of autism.  Maybe I missed the study that just discovered this.  But wait, the coup de grace comes later in another comment when she apparently forgets the point of her own post and says -

Personally, I take most scientific studies with a grain of salt because I know that the people funding, setting up, conducting and interpreting the studies all have their own perspectives and agendas. But that doesn’t mean I feel that the scientific method is worthless.

And all I can say is what the ?!?!?

We can't trust personal experiences and we should take studies with a grain of salt, so that leaves what, religion?  Is it time to go to church to find out what we should believe about autism?  I hear there is a new chapel of Neurodiversity opening soon.

And moving right along, we come to the launch of the hug zone, as announced on the premier anti- anti-vaccine pseduo-science site, Left Brain Right Brain.  They are running a shameless (self) plug for a new "blog/book project" called "The Thinking Person's Guide to Autism".  This is apparently a new blog that has all of two posts so far but describes itself like so -

The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy.

OK, so you want to tell me what the best treatments for my children are?  Given the incredible breath of problems associated with autism and the diversity of possible treatments geared to deal with them, how exactly do you intend to do that?  Maybe you should know a little bit more about my (or other people's) children's specific needs before presuming to offer advice on what would be worthwhile for them?

But then it gets even funnier -

Think of us as a little bit of Snopes for the autism community -- trusted, accurate, and friendly.

Of course, trusted, accurate, and friendly - since you told me you are, I guess I have to take your word for it.  LRBR is plugging it, so it has to be err, trusted and accurate.  And of course, we all know how friendly LBRB is....  Uhm, this wouldn't be a you scratch my back I scratch yours sort of thing, would it?  Hmm, I wonder what other blogs they link to - Autism Science Foundation, Kristina Chew, Left Brain Right Brain .... No, no sign of back scratching or an ideological bias here.

But the plug  from LBRB still bothers me.  Those folk aren't know for a rational approach to autism and are very firmly in the deny-its-a-disability ND "acceptance" camp.  This isn't going to be yet another autism is great site, is it?  You will be publishing articles that talk about the real challenges of dealing with autism and are honest about the science behind autism.  Wait, what's that tagline on the header on your site?

Informed decisions made with love

Of course, because what's a thinking person's guide if the decisions aren't based in love?  We all know that those "other" people aren't thinking people at all AND they clearly don't love their children.  But if I read your trusted, accurate, and friendly site you will tell me exactly what treatments are worth the "time, money, and energy" AND I get to love my children too?  Where do I drink the kool-aid?

You gotta love Mondays.

Dietary Intolerance

Last month there was a presentation at IMFAR 2010 that talked about a study of the gluten-free casein-free diet for autism. While I normally do not like to write about studies that I have not read, this particular one has received a fair about of media attention and is being held up as "proof" that the GFCF diet cannot help children with autism. I have run across many reports like this one that starts off with -

"A popular diet intended to curb the effects of autism received yet another blow today in the form of a new study that found that autistic children who adhered to a gluten-free, casein-free diet showed no improvement in their symptoms"

The problem that reports like this is that they overstate what the study shows. Or perhaps I should say what it appears to show as all I have to go by is media reports, the abstract, and the clinical trial registration. I would feel much more comfortable if the study had underwent the normal peer-review process and had been published in a journal, that way there would be something more concrete to talk about. Regardless, the study was presented and discussed widely in the media, so here we are.

Before I talk about the study, let me first ask a question. Do you think a gluten-free casein-free diet can rapidly "cure" the symptoms of autism in every child?

I think the answer is an obvious no. If the diet were an instant cure or made a huge difference for every child, there wouldn't be any question of whether the diet worked and demonstrating the effectiveness in a study would be trivial.

I think that people forget that this is a dietary change and not some sort of drug. People are used to taking a pill and seeing quick results. If you approach a treatment like the GFCF diet with that expectation, you are going to be disappointed. Think of it this way, if you alter your diet to lose weight or because you need to lower your cholesterol or because you need to manage a chronic condition like diabetes, would you expect to see changes overnight? Of course not, you would understand that these things take time.  So while I am sure that there are some children who will respond very quickly and very strongly to the diet, I am equally sure that majority of children will not will do so.

The question then becomes whether there is a subset of children with autism who can benefit from the diet, what exactly the diet can do for them, and how quickly they can be expected to respond.

With this in mind, lets look at what what question the researchers were attempting to answer in this study. According to the abstract, the goal was "to evaluate the nutritional adequacy, physiological effects, and efficacy of the GFCF diet on symptoms of ASD using randomized double blind placebo controlled challenges in preschool children with ASD".

The researchers recruited 21 children who were determined to have autism using the ADI-R and/or ADOS and were receiving at least 10 hours a week of EIBI (ABA) therapy. I believe the researchers included the EIBI therapy because they wanted to attempt to control for improvements due to other treatments. These children were screened for milk/wheat allergies, celiac disease, and nutritional (iron) deficiencies. They found that 3 children had at least one of these problems (2 potential celiac, 1 iron deficiency) and these children were excluded from the study.

These 18 children were then placed on a strict GFCF diet for 4 weeks before being randomly challenged weekly with either wheat, dairy, or a placebo in some manner. I say in some manner because there seems to be some disagreement between the abstract and media reports as to how many of these challenges there were and how often they occurred. I think the challenges happened only once per week, but it isn't clear if there were challenges every week or only some weeks. Then there is the line that challenges only occurred if "measures were at baseline levels" - I have no idea what that meant in practical terms.

During the course of the study, 4 participants dropped out either because they couldn't adhere to the diet or because they withdrew from EIBI therapy, which left only 14 participants in the study.

Data was collected at the start of the study, 6 weeks, 18 weeks, 30 weeks, and before and after each challenge. I am not sure what was being happening at 18 weeks or 30 weeks as the study only seems to have lasted 16 weeks. It isn't clear what exact data was collected at each point but the following measures were used at some point during the study - Bristol Stool Scale, Sleep Diaries, Actigraphy, Conners Abbreviated Rating Scale, Target Symptoms Scale, Ritvo Freeman Real Life Rating Scales (RFRLRS), as well as some form of nutritional monitoring.  Most of these measures have to do with behavioral or sleep issues.

Given the above, the results of the study aren't too surprising. The researchers found "no favorable effects of the GFCF diet on attention, sleep and stool patterns" but "such effects may occur for individuals or for subgroups of children (e.g. with significant GI disease), providing the basis for positive anecdotal reports."

This study was well designed and well executed, but there are a few problems.

The first problem is that the number of children in the study is very small AND the children who showed a potential intolerance to wheat/dairy or showed iron deficiency were excluded. As I talked about above and as the researchers acknowledged in their abstract, only some children seem to benefit from the diet. And yet the researchers not only failed to find the children who would benefit from the diet, they also kicked out the children who were most likely to benefit.  This coupled with the fact that there are only a handful of children in the study means that the diet would have had to have a very large effect to be seen.

The second problem is the length of time of the strict portion of the diet before the challenges. While there is no established length of time to try a diet, I think it needs to be longer than 4 weeks. If you look at other conditions where a restricted diet is used as a treatment (such as celiac disease), you will see that while some people respond quickly while others take a good while longer.  The only children I would expect to see major changes in four weeks are the children who would most need the diet - and they were excluded from the study.

The last problem is the tests used to detect changes. From what I can see, the tests were all having to do with behavior, sleep , or stool. None of these tests (except the last one) have to do with the biological changes that happen when a child responds to a diet. When we tried the diet with our older daughters, we did so because there were several abnormal results in their blood work and one of the ways that we could tell that the diet was working was that these measures improved. We also saw behavioral changes over time from the diet but I don't know whether any of the measures used in this study would have been sensitive enough to detect the changes - especially in only 4 weeks.

As for the challenges, if the tests aren't sensitive enough to see subtle changes over a 4 week period, how are they going to see the subtle changes from a single dietary infraction? We have had accidental "challenges" over the years and while we can (almost) always tell from short lived behavior changes although I don't know whether someone who didn't know them a well would see the change. But when these "challenges" happen close to the time when they have blood tests done, the result of tests show the "challenge".

The bottom line is that when testing whether the GFCF diet works, you need to find the children that would benefit from the diet, allow a long enough time to see the changes, and have a better way of seeing these changes.  As a result, this study does not add anything new to our understanding of the diet.

Authenticating Studies (humor)

This is so very true (via xkcd) -