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Beware of Autisms

Beware By Mark Blaxill

(reprinted with permission from The Autism File)

There’s a new fad in some quarters of the autism world. Frustrated by their lack of progress in pinning down the biology of autism, many scientists have begun planning a retreat, a way to avoid owning up to their failures and to keep doing what they want to do in autism research despite the fact that little of it has been working. Some have been trying out an innovative branding concept. Instead of using the familiar label “autism”, they’re proposing to change the name and the message by adding a single letter, an s at the end of the word. Changing the name of the disorder we know as autism to “autisms” may seem like a small matter. It may even seem intriguing and attractive: a way to recognize the diversity and individuality of our children. But beware of scientists bearing semantic shifts. There is more to autisms than one additional s.

The autisms idea is coming from the highest levels of the research establishment. The man currently in charge of developing a strategic plan for autism research at the National Institutes of Health, Thomas Insel, had this to say in a press conference convened by the CDC on March 6, 2008 on “vaccines and autism.” “We tend to think about this, actually as a group of disorders”, Insel offered tentatively. “Sometimes we talk about autisms rather than autism per se.”

For the autism parent community, there’s a certain appeal in this seemingly modest comment. After all, parents know more than anyone that while children with autism share common behavioral features; they also differ enormously from one another in ways that might be medically important. “Co-morbid” conditions like diarrhea, seizures, and sleep disorders are more common in autistic children, but they are not universally shared in the same way the core symptoms are. So why wouldn’t it make sense to acknowledge, indeed even celebrate, the diversity of the condition rather than adhering to rigid and monolithic nomenclature?

The answer is that there’s a trap in autisms.

And understanding the trap requires understanding the business of science. Specifically, it requires parents to recognize their own interests by understanding how the interests of the producers and consumers of science differ.

As parents, we are consumers of autism science and our interests are clear. We want to see a lot of money spent on autism research, and we want that money spent quickly. Moreover, we want to spend money in two ways: on treatments that can help our children as soon as possible and on the areas of highest potential to prevent future cases of autism. To that end, we need to push for breakthroughs: ways to explain why autism has grown so rapidly and is now so widespread, not why it’s such a puzzle. In addition, we don’t want to see researchers who have worked for years on dead end research projects to be rewarded with even more money, we want the researchers who receive public funding for autism research to feel like they have pressure to produce results; Put differently, we want scientists, the producers of the science that will shape our children’s future to be accountable to us.

The interests of the producers of scientific research are very different. These producers—individual scientists and the departments and universities they work in—have career and business interests in the research money that flows into autism. They need to fund their laboratories and their technical staffs’ salaries and to provide overhead relief back to their departments heads and university deans. For that they need grants and lots of them, the more grants, the better.

For most medical research fields, it’s far better when there’s a large group of motivated consumers who can go out and raise awareness over a disease condition. That can really open up the money flow. This cynical realization appeared most clearly to me in one meeting I attended with a leader of one of the National Institutes of Health. During the discussion he said, “We think autism is an opportunity for us.” Autism an opportunity? It seemed odd to me, but this man was clearly thinking about the business of science. When he thought of autism, his first thought was not the tragedy it represents for the families but rather the funding it could bring to his agency.

To be sure, medical researchers are almost always sincere in their work. Most of them talk with skill about the search for prevention and cure. They usually convince themselves. But there’s a crucial sense in which the interests of producers and consumers of disease research differ. There’s no economic benefit to the research business in getting rid of a disease. In fact, the world’s greatest successes achieve the opposite; the invention of penicillin threw hordes of syphilis doctors out of a job. So while medical research certainly pines for heroic stories of disease elimination, in reality the practicing medical research community needs disease to sustain its access to society’s resources.

Seen in that light, it’s easy to understand why autisms is a much better branding choice for the medical research enterprise than the more mundane concept of autism. After all, it’s all about the business.

Let’s consider three specific ways in which autisms provides supports for the business interests of scientists while also undermining parents’ interests.

Autisms expands the financial opportunity. Tapping into the global emergency we face in autism is good for the research business, but securing grant money is an ongoing challenge for most practicing scientists.  Big bets were placed on the genetics research programs and oodles of money spent, but the results have been a serious embarrassment for the science community. In the absence of a new grand project like genome scans, the next best bet is to keep the money flowing, but to keep the distributions in much smaller pieces. Autisms fits that bill perfectly.

Autisms explains the failure of the prevailing theory. If autism is more than 90% heritable and almost entirely genetic, then millions of dollars, thousands of families and a dozen genome scans later, one would have expected to find a gene or two that survived repeated investigation. Sadly for the genetic causation hypothesis, ever more statistically powered studies found nothing of the kind. One would hope that failure like this might have been an opportunity for learning and might force a reallocation of resources towards environmental causation research. Instead, the old school autism scientists have tried to change the subject. If the theory doesn’t explain the disease, then the theory can’t be cast aside, it’s the disease that must be thrown out. But too radical a revision wouldn’t do anyone much good. What’s needed is the Goldilocks solution to modifying the disease: not too much change to disband the research community, not too little change to keep the failure of the theory exposed. Autisms? That sounds just right.

Autisms may even reduce the political influence of the parent community. As so many parents of children with an autism diagnosis learn, there is a point after the initial devastation and grief when a part of our identity becomes associated with the label of autism. Because the surprising impact of the autism label is that it draws families together in a common cause. We understand each others’ suffering and eventually—via different vehicles and over many varied paths—we become comrades in arms. We learn from each other. We pursue common interests. Eventually we organize, albeit not very well (who has time?). But each and every one of us has a powerful motivation; we wake up every day and realize that our most important purpose here on earth is to do something for our children.  This passion and drive is the source of our power, especially when forged together by the common bond of a shared identity. Autism.

So for a science community not particularly eager to be held accountable for results and far more interested in setting their own research agenda than to have parents working as advocates to set the agenda for them, autism has been a disease community that has been careening out of control. Those pesky parents are growing far too determined and far too powerful. One useful way to neutralize this kind of power is to divide it. “Your child doesn’t have autism”, a new label suggests, “He just has one of the many autisms.”

From autism to autisms. As parents, we have to recognize how deeply cynical this card shuffle is. And just as we’ve learned to despise what autism has done to our children and families, we need to become mindful of how language can be turned against us.

In short, we need to beware of autisms.

Comments

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Cherry Sperlin Misra

You have to wonder WHY our great medical fraternity now wish to use the word autisms while still claiming that they do not know the cause of autism. The term autisms will certainly imply to most people that the disorder has a variety of causes. We know for a fact that the steep rate of increase in cases of autism began from a particular year and in all states of the United States simultaneously. Whats the use of a medical degree if you dont possess the logic of mind to realize that this indicates likelihood of a single cause. Or does this indicate instead some very smart people who wish to delay, dilute and distract from our number one purpose- wiping out that cause of autism
Notice how easy it is to delay- Spend 10 years on genetic research and then a couple of years deciding what to do in the future years . Which of us has confidence today that future research will be any better than past research ?
The word "autisms" is not new. It has been sent up as a trial balloon on several occasions in the past. It should be rejected as not based in science.
For those parents anxious to have the variety of symptoms of autistic kids recognized- You have every right to expect and demand that from medical science.
Next January lets award a prize to Dr. Tom Insel - a bronze plaque for his desk, inscribed: THE TRUTH IS A MOVING TARGET

Jack R.

I think you are probably right about the potential misuse of the word "autisms"

But....what if it really is the RIGHT word?

In the end I think that we need to be looking at the medical differences in children and classifying them as such. I think that GI dysfunction or neuroinflammation are far better discriptors than Asperger's or Hyperlexia. From a treatment point of view my kids will have from more in common with GI kids regardless of classification than they might with similarly labeled Asperger's kids.

And if a GI doc gets some cash to study GI induced autism and a virologist gets some cash to study chronic viral infection autism I think that is GREAT. Call it one autism and they won't be there. They'll throw their hands up in dispair and walk away.

I think "autisms" opens the door for causation, a door previously closed to us.

Harry H.

Mark, reading this made me think of another word; Dilute.

In the last decade we've seen a broader definition of autism used to explain the epidemic numbers and now we have "autisms" to further muddy the research field.

It appears the powers that be are diluting the efforts to find a cause/cure. I guess they don't want to cure something that produces such a heartwarming revenue stream. That wouldn't be very good for business.

Please keep up the good work.

Gatogorra

Thank you for the extraordinary insights, Mark.

How crafty of them. A few of these Wiley Coyote gene studies have managed to come up with something which *might* effect, say, two to five percent of children with autism. If they come up with enough of this fractionalized genetic evidence, they could reach "100" at some point, claiming that each 2% or 5% or 15% "segment" of the autistic population represents a different variance, a different version of the disease.

In a study of posttraumatic stress severity, researchers found that those who suffered trauma as a group were far more likely to emotionally recover from the experience whereas those who were fragmented from like-sufferers, suffered in isolation, were far more likely to show signs of worsening psychological damage in the long term. In the study of Vietnam vets, they found that the circumstances of returning soldiers-- the separation from fellow veterans, lack of understanding in the social context and lack of resources-- were the perfect recipe for psychological devastation.

From that standpoint, "autisms" is economically brilliant. Researchers can expect the juicy niches of "mysterious" and highly profitable disorders to be multiplied for mom, dad, sis and grandma for all the "fragmented" and separate "populations" making up autism families. Divided we fall which is good news for disaster capitalists.

Teresa Conrick

I don't see my daughter's severe issues as a different kind of autism compared with a less severe child or that he/she has a different cause than my daughter.

Genetically and environmentally, the kids are affected differently-

Can a car accident not break a leg on one day and break an arm the next? Just because treatments and therapies are so different as far as effectiveness does not change the mode of illness.

Having one child respond in a huge way to the gluten-free/casein-free diet should not take away from those who have minor improvement. Some may not have any healing from it but may need SCD instead- or no soy or no corn, etc.

Autisms is not the same as asd as asd is a continuum -- and that may be from severity of injury/illness to a lesser condition of that same injury/illness ---- not different roads to that illness/asd.

Inselitis

Who does Insel think he is to coin a new word to describe the condition of our kids? And to tell us about it. Is he an expert on the condition?

Do you think he understands that "autism" and "autism from vaccine injury" are different entities. It seems to me like he does after his endeavors to "craft" research into causes of the latter. Got to have to explain this away somehow!!

Tired of this

I have never met one parent in "real life" that does not blame vaccines for autism or autisms. Let's stop "researching" and warn the public to stop vaccinating pregnant women, post natal women and children. This will END almost all autism. Pregnant women should be warned not to take valproic acid and tributelene. There the "other" cases of autism would be prevented. Why is this so hard? Oh yeah, MONEY.

Devin's Dad

Is not the word "AUTISMS" just another way of saying "AUTISM SYNDROME DISORDER" (ASD)? The name may change, the issue remains the same!

Maria Alvarez

Despite the fact that I can see and follow the rationale in this article, I hope that the clinical work and the research soon start working on the different etiologies. Autisms are a reality. "Many autisms many causes" can actually be the beginning, a way to sort out many of the "medical" differences that are present in the history of our kids.
And why would I say so? Because after five years of intensive and dedicated biomedical treatment, my seven year old son does not seem to portray any of the common characteristics as described by DAN doctors and therefore, treatments do not seem to help. It is about time that we stop defining kids as my son as "difficult cases" and face the fact that there might be indeed different etiologies ...

Texas Dad

We see something similar in artificial intelligence. Since the bust in the 60's, practical applications of the concepts have made progress. As they do, they are labeled, but the boundary of AI keeps getting pushed back. Image recognition, knowledge based systems, voice recognition, evolution algorithms become practical and are some how disassociated with the "Strong AI" vision. They are no longer thought of as AI.

I think we are seeing something similar in autism, and in some ways it makes sense. Fragile X gets carved out. Seizure disorders will be carved out (and I think this is a mistake), various genetic SNP's and other polymorphisms will be carved out (at 0.2 % each or so?). "That's not autism, that's MET copy duplication 666."

I do think further differentiation will help understand the mechanisms and we may end up with 2, 3 or 4 buckets in the autism tub. I just hope we don't start funding grant money to study which ones float like witches.

The concentration on purely genetic causes for more than ten years was a mistake. It was an idea that deserved merit for a few cycles of investigation, but no blood is coming from this stone. While Occam didn't want uninvited guests at the table, the "purely genetic, geeks breeding" guy is sitting alone and none of us are eating. It is well past time to start opening up to other ideas. The genetics-only inquisition has polarized it so much, that interested researchers have an up-hill struggle and risk professional reputation when even looking at non-genetic possibilities.

It should not be so hard for me to find a lab to test a vaccine sample through a virus microarray. Wow. You'd think I'd asked them to clone Obama.

Some differentiation will help the research; I hope they don't take it to the cynical extents you describe.

Julie Obradovic

As you know Mark, one of the tricks that repeats itself throughout the thimerosal studies is to create dozens of symptoms to look for an association.

It's the equivalent of trying to find out if the flu virus causes the flu by looking for how many people vommit, get a headache, have body aches, or have a fever, (but looking at fevers of different degrees, like 100, 101, 102, or 103) when they are exposed to the flu virus.

When they find an association with one or two symptoms, like vommitting and a fever of 101 but no other temperature, they get to report that the results are mixed and it doesn't appear there is an association between being exposed to the flu virus and getting the symptoms of the flu because not everyone got the same symptoms in significant amounts. It's crap.

Using the word "Autisms" is just another way of doing the exact same thing. The "puzzle" will grow ever more complicated as the definition of these "Autisms" is broadened, and viola, there is a new explanation for the higher numbers. Such a phenomena can only delay the science our children desperately need even longer.

passionlessDrone

Hi Mark Blaxill -

From a clinical level it also seems like there are autisms; physiological manifestations are just as varied as behavioral ones.

I think we can find a way to frame the autisms appropriately; and in fact, a failure to do so is just as dangerous for the battle of minds. For example, GF/CF doesn't help some children; if we convince the public that there is one autism, and someone in that public knows a parent whose child was not helped by the diet, we run the risk that they believe the diet helps no children with autism.

This isn't meant as a defense of current research priorities.

- pD

Teresa Conrick

Mark,

Boy, I needed a dose of this about right now! Being in the trenches, you see and hear a lot -- kind of like the good, the bad and the ugly in the autism world and the "autisms" have been coming faster and more often these days. To hear that word can be like nails on the chalkboard for me.

I am definitely "old school" -- I don't like Rap and I don't like "autisms". Call me boring but as you and Dan have mentioned, the facts tend to cluster around a hypothesis, and this one just does not jive for me.

What it does show is that their facts - genetics, "moving goalposts", "many autisms thus many causes", tend to cluster around a foggy epicenter instead of the original epicenter.

Thanks for a dose of reality.

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