11/26/2010

Are All "Truths" Equally Valid? Comparing the AoAers to Kesey's Cuckoo

It seems a silly question to ask, given the self-evident answer: we know that all beliefs and opinions are not equally valid. Obviously, it's important to acknowledge that the person who believe something believes it to be true, but it doesn't mean it is.


The reason I raise this question is that most of us in the skeptical community patently reject the assumption that all "truths" are equally valid. What matters is evidence. Where there is no clear answer, rather than assuming a position of absolutism regarding "truth," we tend to adopt a "wait and see" approach or an honest "I don't know" approach.


This is not the case in most areas. Truthiness is often more important than truth.


Chantal Sicile-Kira has a Thanksgiving post up at Huffington Post that troubles me. The part, I suppose, that bothers me most is this idea of truths, as if everyone's version of reality is equally valid and true. She writes, "The autism community has it's differing opinions, because all of our perceptions and experiences are a part of the mystery that is autism: we share a similar label but our personal stories, perceptions, beliefs, and truths are different. And this needs to be respected" (punctuation intact). Had she left it at perception and beliefs being different and needing to be respected, I believe I could endorse that. In order to communicate with others on similar journeys but with radically differing perceptions, we'll have to respect that those perceptions are different or no communication can occur. 


It's this idea of truths, though, that pricks at me. Truth. I've used this line from Kesey's One Flew Over the Cuckoo's Nest several times over the last few months as I work my way through to understanding other people's realities: "It's still hard for me to have a clear mind thinking on it. But it’s the truth even if it didn't happen."


True. It's true to me if I believe it. This suggests that there is a wide gap between how scientifically and empirically based people would use the concept of truth and how the general public uses it. Indeed, there's a wide gap in the actual definitions of truth and how Sicile-Kira uses it here, and in how Kesey used it in his book. Theirs is a personal truth, not an empirical, grounded-in-objective reality truth. It is a subjective truth, one that can walk at complete odds with anyone else's subjective experiences. 
truth
"1. the true or actual state of a matter: He tried to find out the truth.
2. conformity with fact or reality; verity: the truth of a statement.
3. a verified or indisputable fact, proposition, principle, or the like: mathematical truths.
4. the state or character of being true.
5. actuality or actual existence.
6. an obvious or accepted fact; truism; platitude.
7. honesty; integrity; truthfulness.
8. ( often initial capital letter ) ideal or fundamental reality apart from and transcending perceived experience: the basic truths of life.
9. agreement with a standard or original.
10. accuracy, as of position or adjustment.
11.Archaic . fidelity or constancy.—Idiom
12. in truth, in reality; in fact; actually: In truth, moral decay hastened the decline of the Roman Empire."

The saying "and the truth shall set you free" decries this personal, subjective and independent-of-reality truth. Kesey's narrator, Chief Bromden, relates his truth, his subjective, hallucinatory and often delusional experiences, and throughout the story moves back towards sanity and reality by backing away from the self-imposed isolation of a separate reality; his quest towards liberation and reality setting him ultimately free from the self-imposed silence and fog and reconnecting him with the wider world. Sure, it's an ambiguous ending in that he leaves the institution and strikes out, his future and future truths unknown. At the very least, though, the reader has a sense that there will not be a return to his fog or self-imposed exile. He will see the world from a more objective perspective.

Not all people who create a reality distinct and separate from what mainstream society recognizes as close-to-objective reality will retreat from the fog, though, and it seems clear as time passes and more studies are done that show no link between vaccines and autism, that some parents and indeed, autistic individuals, as well, are retreating deeper into the fog. They, too, see the world in similar terms as Chief Bromden: there is a Combine out there attempting to coerce and force a rigidity of behavior and beliefs; for these individuals, it is not the institutional setting enforcing it, but the combined machinations of the pharmaceutical industry and the governmental complex working through the use of vaccinations to at best, damage an entire generation of youth, and at worst, engage in a eugenics program. It's their "truth" even if it really isn't happening.

The question becomes, then, for those who see this as foggy behavior, how do we interact with people divorced from objective reality? Do their beliefs deserve respect? I think not. Do the individuals themselves deserve respect? I think that depends on how we're using the term respect. They deserve compassion, certainly. But I don't think we need to elevate distorted thinking and conspiracy theories as equally valid to scientific and empirically validated truths.

36 comments:

Lisa Jo Rudy said...

Assuming that you're referring to different opinions on "what causes autism," I'm not sure I agree with you.

Parent A (me) sees a child who had no special regressive event - instead, my son simply didn't progress as he should have after about age 2.5. Nothing dramatic, no physical symptoms, but slow, idiosyncratic development.

Parent B sees a child who developed normally until a sudden regressive event, coupled with serious physical symptoms, sent him to the hospital. After the crisis passes, the child returns home but is never the same - and continues to have physical and cognitive/behavioral issues he never had before the event.

Both children wind up with autism diagnoses.

If each of these things happens, parents will naturally have different versions of the onset of autism. Both are speaking the truth, NOT out of "truthiness" but because completely different things happened to their children.

Lisa

KWombles said...

What? Why? Why go there, Lisa? I didn't go there in my post. Was there anywhere in my post where I discussed this, intimated that there was one cause of autism? One origin? One explanation?

The research clearly indicates there is not one autism, but instead multiple autisms with several different causes. So my post has nothing to do with calling that into question; there's empirical evidence regarding multiple causes of autism. No truthiness there at all.

Plus, I just did a search through my post to make sure: I didn't even raise "what causes autism," so why is that in quotes in your comment, suggesting that I did?

Lisa, rather than making assumptions about what my post was about, why didn't you simply rely on the text itself? It's not like I beat around the bush or invoke a lot of subtext when I write. I'm pretty open.

kathleen said...

Good post-much to think on. Truth does indeed vary from person to person..But,is it truth? Or is it perspective?

Lisa Jo Rudy said...

well, when you reference "truths" in a Huffpost article by Chantal, I assume you're going in the direction of "truth about autism," which typically refers to "truth about causes of and treatments for autism."

Where were you going, then? Sorry if I misunderstood your gist.

Lisa

KWombles said...

Yes, I was going broader than that and looking at how people build their own subjective realities.

True, I referenced Sicile-Kira in the context of her idea of different truths, and I implicated those who engage in conspiracy theories as being poorly connected to objective reality. But we both know this type of behavior goes beyond the narrow autism world. 9-11 truthers, birthers, folks who think the world is flat, folks who think the world is 6000 years old, folks who think evolution is a crock and that global warming is a sham, there is no lack of people who have realities far more delusional that Chief Bromden's or for that matter the AoAers.

I'm curious why in a post that dealt with how we construct our realities and distort the meanings of words to suit our own purposes (i.e. co-option of truth), your first place was to go to regressive autism versus non-regressive, especially when I have written in the past about the incidence of regressive autism, which is not a matter of truthiness or subjective reality, but is based on empirical evidence?

I can't help but think your initial comment focused entirely too narrowly and missed the point of the post entirely. Plus, it implied content in my post that was not there. And I find all that rather disappointing.

KWombles said...

Lisa,

I've been pondering our exchanges here. In your first comment, you write that you're not sure you can agree with me and bring up causes of autism. Since I didn't bring up causes of autism and certainly didn't argue against regressive autism, I'm wondering, now that I've clarified that I was speaking more in general terms of various invalidated and scientifically implausible belief systems, if you could redirect your agreement or disagreement (whatever that may be) back to what I actually did argue: "But I don't think we need to elevate distorted thinking and conspiracy theories as equally valid to scientific and empirically validated truths."

If we restrict the definition of truth to that which is verifiable and factual, then it's clear that not all beliefs are equally valid. How many times have we heard that one is entitled to one's own opinions, but not to one's own facts?

It is that which I write of, that which I mean and why I placed truths in quotes and took the time to provide all 12 definitions of truth. :-)

Lisa Jo Rudy said...

I certainly agree that we are under no obligation to validate or support conspiracy theories or deliberate obfuscation of facts.

But I suspect we may diverge when it comes to the fuzzier areas of "truth."

The whole idea of "grounded-in-objective reality truth" is a tough one to swallow when you've spent some time (as you and both have, I believe) exploring philosophy and theology.

Having been brought up as a Unitarian (humanist), gone to liberal schools, and worked almost exclusively for science-oriented non-profits, I know I SHOULD agree that there is an objective, verifiable truth out there. And I SHOULD agree that the scientific method will lead us there.

Yet over the years my faith in that process has dwindled. I still believe in the process as "the best we've got," much as I believe in logic and reason.

But I have come to a place in my life where I suspect that the tools we have for getting at "true truth" are woefully insufficient.

Maybe I'm most comfortable with definition #8 of truth: "ideal or fundamental reality apart from and transcending perceived experience: the basic truths of life."

Of course, none of that philosophical meandering really has much impact on my day to day life, where I am practical, deadline driven and linear in my thinking... But if we're getting deeply into personal philosophy, that's where I'm at.

Lisa

KWombles said...

Just because the scientific method may fall short of perfection is no reason to abandon it. It's still the best way to get to objective truth.

I think that anyone well-informed of the various biases, heuristics and other psychological/neurological impediments to perceiving objective reality already readily admits that we'll never get 100% there.

It's still the best shot, though, and when it comes to the medical decisions we make, far better to rely on this flawed, human endeavor at reaching objective reality than on woo and superstition.

Philosophical inquiries are another matter entirely. There is objective truth (where matters of science and evidence rule) and there is "truth," the guiding principles one lives one's life on, decides one's moral values on. That's decidedly not where this post was gravitating as the scientific method cannot speak to moral values or philosophical principles.

Is it probable that some of the people who believe highly improbable things have an underlying philosophy that allows this to take root and fester? Yes, although it's just as likely these individuals are not particularly introspective and have not delineated a personal philosophy with which to guide them. It's likely, as well, that there are underlying neurological mechanisms accounting for paranoid and delusional beliefs like vaccines programs as eugenics programs.

Regardless of the mechanisms by which people come to believe improbable, unlikely and obviously false things, their beliefs do not qualify as equally valid truths or "truths," even if we devolve truth to be a personal, subjective philosophy.

Not all beliefs are equal. Nor are all opinions. Where it becomes evident that beliefs and opinions are founded in fantasy land, respect for those beliefs and opinions is not warranted, though compassion for the person believing them certainly is.

In other words, there can be no debate, no argument, where there is no agreement on the facts.

If we restrict this back to your initial assumption but revise your regression/non-regression (Who argues that there is no regressive autism? That is not the divide in the community--the divide is over whether vaccines caused that regression) to the real divide in the community: vaccine-induced autism versus some other mechanism, then where the individual appears to be grounded in reality and conveying the experience without leaping to absolute causation, then affording their narrative respect seems reasonable and warranted.

Respect for those at AoA who insist that this is a giant governmental/industrial conspiracy? Not so much.

Lisa Jo Rudy said...

I obviously don't believe that vaccines have caused an epidemic of autism (nor do I believe in an epidemic of autism period).

But I'm still not sure how to marry my intellectual pragmatism with my philosophical uncertainty, especially when it comes to better understanding the human mind.

While I GRASP the importance of the scientific method, I think it's far better suited to physics, earth science and technology than to biology. So many autism-related studies, even those conducted by top researchers, seem to be questionable in their protocols, findings, and significance...

For example, I find myself dismissing any study that starts out "we studied a cohort of X number of children with autism spectrum diagnoses." WHICH children with WHICH autism spectrum diagnoses? And WHICH other symptoms? Without that information (and few researchers even bother to parse out those issues) it seems to me like saying "we studied a cohort of children with various combinations of schizophrenia, irritable bowel syndrome, intellectual disabilities, speech delays and sensory dysfunction." These kiddos have as many differences as they have similarities.

In short, very frustrating - and, IMO, not very compelling evidence in any direction.

KWombles said...

“So many autism-related studies, even those conducted by top researchers, seem to be questionable in their protocols, findings, and significance...”

By whose standards, Lisa? You really can’t mean that the scientific method doesn’t belong in biological fields, which includes the body, the study of pathology, the study of treatments for diseases and disorders? What better place than biological studies for the scientific method?

The scientific method utilizes the following:

o "Ask a Question
o Do Background Research
o Construct a Hypothesis
o Test Your Hypothesis by Doing an Experiment
o Analyze Your Data and Draw a Conclusion
o Communicate Your Results
• It is important for your experiment to be a fair test. A "fair test" occurs when you change only one factor (variable) and keep all other conditions the same."

http://www.sciencebuddies.org/science-fair-projects/project_scientific_method.shtml

You can’t seriously be suggesting that these have no place in the study of diseases and disorders?

I pulled the first study that resulted from a database search to look, randomly, at whether your assertions were on base. Mind you, I’ve read hundreds of autism-related studies and can’t recall one instance where all that you allege is accurate, but I thought it best to do a spot check.

Sizoo, B., van den Brink, W., Gorissen-van Eenige, M., Koeter, M., van Wijngaarden-Cremers, P., & van der Gaag, R. (2009). Using the Autism-Spectrum Quotient to Discriminate Autism Spectrum Disorder from ADHD in Adult Patients With and Without Comorbid Substance Use Disorder. Journal of Autism & Developmental Disorders, 39(9), 1291-1297. doi:10.1007/s10803-009-0743-2.

Sizoo et al. examined 129 individuals. They note that the ASD diagnoses were based on DSM-IV criteria. Indeed, they specify: “For a diagnosis of ASD, semistructured
clinical interviews based on the Autism Diagnostic Interview Revised (ADI-R) were used (Lord et al. 1994) as well as DSM-IV checklists, and all available information from schools and child psychiatric services with regard to the developmental history in childhood.”

I could continue through the 3,187 full-text peer-reviewed articles that came up for autism spectrum disorder in the various psychological databases to verify that indeed, the researchers verify the diagnoses, the IQ, the comorbid conditions, et., but again, I’ve spent years reading the studies in the field as it is my field of expertise, and I won’t spend any more time on this tonight.

Yes, there are bad studies. See Wakefield, the Geiers, etc., for examples of bad studies. Ooooh, Blaxill’s article also comes to mind, as well as all those unfortunate monkey studies.

Again, there’s no reason to throw out the scientific method because there are flawed studies conducted by flawed human beings. That is a foolish and insupportable; it’s tantamount to saying that since people still die of cancer so we might as well quit studying it.

I get being discouraged. Perhaps it’s time you take a break from the area?

Lisa Jo Rudy said...

Of course I'm not throwing out the scientific method. Of course we HAVE to use the best resources we have to come to conclusions about biology. We don't have better tools, so we're stuck with what we have.

But do you really feel that a cohort that meets the DSMIV criteria is likely to be a cohort with entirely similar symptoms and circumstances? My kid meets the criteria. So do kids who are non-verbal, hyper-verbal, self-abusive, epileptic, and so on and so forth.

In my opinion, simply saying that a group meets the DMSIV criteria is not sufficient.

Are these kids with asperger syndrome or autistic disorder? Are these kids with comorbid mental or physical challenges or disorders? Are these children receiving therapies and/or have they received therapies? which ones? for how long?

My point is not "the scientific method is a pile of crap."

My point is that it is extremely difficult to conduct a study of children with a disorder as difficult to pin down as autism and get an outcome that does more than point in a general direction. Not only will the children themselves be very different from one another in terms of symptoms and severity, but they will also be receiving different therapies, engaging in different types of school-based programs, and so forth and so on.

When you use the scientific method to study fluid dynamics, for examples you can vary only one thing at a time and observe the outcomes of an experiment and expect an accurate finding. In some biological studies, you can do very much the same thing.

In the case of autism in children, in my personal opinion, researchers are dealing with an enormous number of variables all at once. It is rare for a researcher to select, for example, a cohort of children who all have the same constellation of symptoms, have received the same therapies, and are attending the same type of school program.

You asked about my philosophical opinion about "truth," and I gave it to you. You asked about my opinion on biological studies of children with autism, and I think they are useful but limited.

I don't understand why this seems like such a radical point of view.

Lisa

KWombles said...

Lisa, I take great care to make sure I'm responding to what's actually been written; I don't believe I accused your position of being radical. I simply pointed out that the best possible chance of figuring out what's going on is through the scientific method and that is absolutely needed in relation to human diseases and disorders. I obviously believe its imperative in psychological matters as well. Our best chance of understanding how and why people do the things they do is systematic scientific examination.

You wrote that the research relating to autism was "not very compelling evidence in any direction." That seems fairly different from you writing in your last comment that the studies into autism "are useful but limited."


Also,I wish that when you put things in quotes in your comments here, you'd make it clear that those aren't my words in those quotes. For instance, I never wrote that you had said "the scientific method is a pile of crap." The way you have it in your comment, it really appears that you're indicating I've done just that.

I can see that you are frustrated that there are no clear answers in one direction when it comes to the autism research coming out, but you are mistaken that the researchers aren't looking closely at the differences in their samples. It would be highly irresponsible if they were not clear on any differences. One cannot study a sample without identifying as many of the possible confounding variables as possible.

For example, if we look at the study I used in my above comment, we can see that, indeed, researchers know exactly what the characteristics of their sample are:

"The ASD group consisted of 76 subjects with a diagnosis
Autistic Disorder (n = 10), Asperger Syndrome (n = 32),
or Pervasive Developmental Disorder not otherwise specified (PDD–NOS: n = 34). The distribution of these subtypes is comparable to other studies (Fombonne 2005 p.53). The ADHD group consisted of 53 subjects, 44 with the combined subtype, and 9 with the inattentive subtype.Substance use status was determined using DSM-IV criteria.
Subjects with current abuse or dependence were designated as SUD? (n = 28), and those with no life-time history of SUD as SUD- (n = 76). Subjects with a former
history of SUD, who had been abstinent for at least 6 months prior to participation in the study, were designated as SUD^ (n = 25). Because behavioral addictions,
like gambling, seem to share the same neurobiological
underpinnings of craving and dependence, gambling was
also included in our definition of SUD (Goudriaan et al.2006; Potenza 2007)."

It's certainly been a fascinating discussion here that has ranged far, far away from the points of my post. It's especially interesting when considered against the backdrop of other parent bloggers who are frustrated that a wider diversity of the spectrum is not used in studies. Some argue that if you don't study the entire range of possible autism manifestations in each single study that the study is completely worthless.

I'm not sure what the fix is to relating how and why scientific studies are conducted to parents and consumers and the studies' relative values, but it's abundantly clear that there is a distinct communication breakdown occurring.

Lisa Jo Rudy said...

I think we're somehow talking at cross purposes here, but not sure why.

Yes, SOME studies do look at specific subtypes. OTHER studies (IMO most) look at a generic group of people with autism. The general group of people with autism is extremely heterogeneous.

What you asked was "You really can’t mean that the scientific method doesn’t belong in biological fields, which includes the body, the study of pathology, the study of treatments for diseases and disorders?" Right?

OK, in answer to that very specific question I would answer that yes, the scientific method can be very useful in studying the human body (and other biological forms), and in better understanding a wide range of diseases and disorders.

In the case of hfa/aspergers, ADHD and many other other of today's "disabilities," however, we are looking at what I would term constructed disorders. None of these disorders exist outside of our definition of typical, normal, acceptable, desireable. I'm not talking about non-verbal, self-abusive individuals, of course - but about that growing number of people who are pathologized on the basis of a set of unmet norms and expectations.

I am not at all sure what the scientific method can tell us about such differences. It certainly can't tell us whether they are good, bad, or simply different.

KWombles said...

I'd agree we're at a crossroads and that I'm unsure quite how that happened. ;-)

Almost all of the disorders in the DSM are "constructed." This is an area I teach on in my psychology courses. Researchers determine that there is a difference, collect information on what the differences consist of, conduct studies to compare different populations, and then draw conclusions.

Yes, the DSM is in flux (as are medical diagnoses as research advances). Yes, the DSM is a flawed instrument that is a consensus document based on research and political considerations. The ICD (The International Classification of Diseases) is a better, perhaps less flawed instrument.

The fact that the DSM is flawed and changes over time doesn't mean that using the scientific method is not the best way to figure out things relating to conditions that have been classified as mental or neurological disorders.

Again the scientific method is a way to get answers: ask, get background information, formulate a hypothesis, test the hypothesis, analyze the data, and then retest the hypothesis.

I just don't understand how one could think that this method is not applicable to questions dealing with human psychology, to questions regarding prevalence of particular traits in a population. How else would one gather information?

And by and large, the disorders in the DSM cause serious dysfunction. If the public chooses to co-opt serious disabilities and impairments (Oh, silly me, I'm so OCD, I have to check my locks twice before I can go to bed!) and render them as nothing more than quirks, that is a failure of the public and a serious disrespect to the people who are crippled by their issues, like PTSD, OCD, and depression.

It seems that questions of pathologizing personality quirks are entirely distinct from serious impairments like autism and intellectual disability. And yet, still the scientific method is the only way to answer whether that's really happening.

There are three methods used to determine deviance or abnormality in psychology: statistical frequency (so, yes, absolutely the scientific method is the way to go to tell us if these "constructed" disorders are differences from the norm and how), social norms (so scientific method still works: what are the social norms--studies conducted to determine what members of a society considers to be normal or desirable traits and what traits are not), and maladaptive behavior (again, still the scientific method--what behaviors are maladaptive and why).

We've ventured far afield from a post that posited that not all "truths" are equally valid.

Even on questions of philosophy, the scientific method can be valuable. If we want to accumulate information on what people find to be important to them, survey methods allow this: this is still the scientific method. Statistical analysis allows us to measure how belief systems change over time. For example, the Pew Research Center conducts research on religious beliefs and how they change over time in the US.

Lisa Jo Rudy said...

Kim - I don't disagree that the scientific method can be useful and helpful in understanding norms, testing methods, etc. (as is statistical analysis).

I think I may be thinking/talking from a more philosophical perspective because your focus was on, I thought, the definition of "truth." Which is,a philosophical/theological question.

Relative to the DSM, I agree that PTSD, OCD and depression, etc. certainly are serious disorders, as are forms of autism.

I find the definitions of these disorder are often so fuzzy, though, that lay people (and even some professionals) find it very tough to distinguish between, for example, true depression and appropriately sad feelings following a bereavement.

In our society, we tend to use terms like "depression," "obsession" and even ADHD to refer to personality styles and traits.

Of course there are tests that, in general, are used to determine how far off the norm anyone is - and a diagnosis should not be based on a minor deviation from the norm. I am convinced, however, that the diagnostic criteria in the DSM are often misused, and appropriate tests are either not used or misused.

Meanwhile, certainly in the case of autism (and I'm guessing in other cases), there seem to be many different but unacknowledged syndromes within the disorder. So we're seeing people with radically different symptoms (but a few commonalities) being studied as if they had the same etiology and natural history.

I keep likening it to a headache: if you studied people with "headache" as a single group, ignoring additional symptoms or describing them as "comorbid," you'd get very, very skewed results. I believe that's what's happening with autism - along with all the other issues described above.

I appreciate the opportunity to clarify my own views through this conversation!

Science Mom said...

While I GRASP the importance of the scientific method, I think it's far better suited to physics, earth science and technology than to biology. So many autism-related studies, even those conducted by top researchers, seem to be questionable in their protocols, findings, and significance...

What do you propose then if not attempting to adhere to the scientific method for biological studies? I'm afraid that sounds like a statement from an alt-med proponent even if you didn't intend it that way.

For example, I find myself dismissing any study that starts out "we studied a cohort of X number of children with autism spectrum diagnoses." WHICH children with WHICH autism spectrum diagnoses? And WHICH other symptoms? Without that information (and few researchers even bother to parse out those issues) it seems to me like saying "we studied a cohort of children with various combinations of schizophrenia, irritable bowel syndrome, intellectual disabilities, speech delays and sensory dysfunction." These kiddos have as many differences as they have similarities.

I don't agree with dismissing a study simply on that basis. For example, do you examine the hypothesis and assess the methodology to test the hypothesis? Do you consider the variables that the investigators are attempting to evaluate and whether the differences in study subjects will confound? It would, of course, be helpful if you provided a specific example of your complaint though.

In short, very frustrating - and, IMO, not very compelling evidence in any direction.

I think you may be confusing weaknesses of particular study parameters with the scientific method in general.

Lisa Jo Rudy said...

As I've said, I think the scientific method and statistical analysis CAN be very useful. But I think it is a very difficult method to use when studying a group of diverse individuals whose symptoms, abilities and strengths are wildly divergent.

Here's one abstract that might illustrate my point:

J Autism Dev Disord. 2009 Jan;39(1):149-63. Epub 2008 Jul 9.
Effects of a modified milieu therapy intervention on the social communicative behaviors of young children with autism spectrum disorders.

Mancil GR, Conroy MA, Haydon TF.

Department of Special Education, University of Florida, Gainesville, USA. gmancil@mail.ucf.edu
Abstract

The purpose of the current study was to evaluate the effectiveness of combining milieu therapy and functional communication training (FCT)] to replace aberrant behavior with functional communicative skills in 3 male preschool or elementary aged children with Autism Spectrum Disorders (ASD). Study activities were conducted in the natural environments of the participants and parents acted as change agents. A concurrent multiple baseline design across participants was used to evaluate the effectiveness of the modified milieu therapy intervention. Results indicate that aberrant behavior decreased concurrent with an increase in total percentage of communication responses (PCR). The children maintained communication and low rates of aberrant behavior, and generalized their communication from the home to the classroom. A discussion of limitations and future research directions is included.

Maybe the full version of this study (which is inaccessible to people like myself who don't have university access to journals) describes who these kids are, and why they were selected, and how they are different/similar. Looking at the abstract, however, they could be talking about kids at any level of severity in any setting, undergoing any type of therapy.

Liz Ditz said...

Part I

Dear Lisa Jo,

I have been mulling over your responses since yesterday. Let me address a few things:

Parent A (me) sees a child who had no special regressive event - instead, my son simply didn't progress as he should have after about age 2.5. Nothing dramatic, no physical symptoms, but slow, idiosyncratic development.

Parent B sees a child who developed normally until a sudden regressive event, coupled with serious physical symptoms, sent him to the hospital. After the crisis passes, the child returns home but is never the same - and continues to have physical and cognitive/behavioral issues he never had before the event.


Lisa Jo, one thing I have learned, painfully so, from the last ten years and my immersion in science from a lay perspective:

I can't trust what I see and remember.

It's one of the cornerstones of the scientific method: our observations and recall are subject to several kinds of bias.

And this has been shown again and again in different ways, but this is particularly true for parents of children with autism diagnoses.

One early example is Eric Fombonne's testimony in the Cedillo case on June 18 2007 (you can retrieve Fombonne's full testimony from http://neurodiversity.com/weblog/article/189/, scroll down to Cedillo v. HHS (Case No. 98-916V), day 6).

To refresh your memory, the Cedillos claimed that their daughter was developing normally in all ways until her MMR vaccinations. In this testimony, Fombonne reviews several videos taken of Michelle at 9 months, 12 months, and 15 months of age (before her MMR vaccines) and discusses the ways in which she was definitely not showing normal behavior for her age.

There have been other film studies and at least on prospective study. In a press release on the latter (Ozonoff et al.) Oznoff is quoted,


"These findings lead us to two major conclusions," Sally Ozonoff, PhD, of University of California Davis Health System in Sacramento, and colleagues wrote.

"First, the behavioral symptoms of autism spectrum disorder appear to emerge over time, beginning in the second half of the first year of life and continuing to develop for several years.

"Second, our most widely used and recommended practice for gathering information about symptom onset, parent-provided developmental history, does not provide a valid assessment of the slow decline in social communication that can be observed prospectively."


Primary source: Journal of the American Academy of Child & Adolescent Psychiatry
Source reference:
Ozonoff S, et al "A prospective study of the emergence of early behavioral signs of autism" J Am Acad Child Adolesc Psychiatry 2010; 49: 256–66.

Additional source: Journal of the American Academy of Child & Adolescent Psychiatry
Source reference:
Charman T "Autism research comes of (a young) age" J Am Acad Child Adolesc Psychiatry 2010; 49: 208–209

Liz Ditz said...

Part I of several

Dear Lisa Jo,

I have been mulling over your responses since yesterday. Let me address a few things:

Parent A (me) sees a child who had no special regressive event - instead, my son simply didn't progress as he should have after about age 2.5. Nothing dramatic, no physical symptoms, but slow, idiosyncratic development.

Parent B sees a child who developed normally until a sudden regressive event, coupled with serious physical symptoms, sent him to the hospital. After the crisis passes, the child returns home but is never the same - and continues to have physical and cognitive/behavioral issues he never had before the event.


Lisa Jo, one thing I have learned, painfully so, from the last ten years and my immersion in science from a lay perspective:

I can't trust what I see and remember.

It's one of the cornerstones of the scientific method: our observations and recall are subject to several kinds of bias.

And this has been shown again and again in different ways, but this is particularly true for parents of children with autism diagnoses.

One early example is Eric Fombonne's testimony in the Cedillo case on June 18 2007 (you can retrieve Fombonne's full testimony from http://neurodiversity.com/weblog/article/189/, scroll down to Cedillo v. HHS (Case No. 98-916V), day 6).

To refresh your memory, the Cedillos claimed that their daughter was developing normally in all ways until her MMR vaccinations. In this testimony, Fombonne reviews several videos taken of Michelle at 9 months, 12 months, and 15 months of age (before her MMR vaccines) and discusses the ways in which she was definitely not showing normal behavior for her age.

Liz Ditz said...

Part II of several

Dear Lisa Jo,

There have been other film studies and at least on prospective study. In a press release on the latter (Ozonoff et al.) Oznoff is quoted,


"These findings lead us to two major conclusions," Sally Ozonoff, PhD, of University of California Davis Health System in Sacramento, and colleagues wrote.

"First, the behavioral symptoms of autism spectrum disorder appear to emerge over time, beginning in the second half of the first year of life and continuing to develop for several years.

"Second, our most widely used and recommended practice for gathering information about symptom onset, parent-provided developmental history, does not provide a valid assessment of the slow decline in social communication that can be observed prospectively."


Primary source: Journal of the American Academy of Child & Adolescent Psychiatry
Source reference:
Ozonoff S, et al "A prospective study of the emergence of early behavioral signs of autism" J Am Acad Child Adolesc Psychiatry 2010; 49: 256–66.

Additional source: Journal of the American Academy of Child & Adolescent Psychiatry
Source reference:
Charman T "Autism research comes of (a young) age" J Am Acad Child Adolesc Psychiatry 2010; 49: 208–209

Liz Ditz said...

Part III of several

Dear Lisa Jo,

Another issue you brought up:


While I GRASP the importance of the scientific method, I think it's far better suited to physics, earth science and technology than to biology. So many autism-related studies, even those conducted by top researchers, seem to be questionable in their protocols, findings, and significance...


I don't intend the following in a mean way at all, Lisa Jo, and I hope you don't take it that way. But I do mean it in a tough-minded sort of way.

1.The scientific method, with all its faults, is the only reliable way we have to question reality. Biology is a part of reality.
2. Your next sentence is a non sequitur. Just because autism studies seem to you to be "seem to be questionable in their protocols, findings, and significance..." does not invalidate the value of the scientific method in studying autism.
3. To really validate the quote above, you would have to quantify (which is of course part of the scientific method). By that I mean
a) provide a count of all the "autism-related studies";
b) provide a count of all of those that you deem questionable, with documentation as to why they are questionable;
c) construct an argument as to how that ratio invalidates the scientific method in the study of autism.

If you don't do this sort of quantification, you are exposing yourself to the sort of fully-human thinking errors that the scientific method is designed to prevent -- the biases of recall and confirmation.

Liz Ditz said...

Part IV of several

Dear Lisa Jo,


On to your point about the label "autism" including people with very disparate sets of skills, strengths and weaknesses, and that studies that don't segregate subjects based on a finer division than just the autism label:

I'm not sure that you are always correct on this point, either. Take for example Price et al. on thimerosal exposure and autism:

http://leftbrainrightbrain.co.uk/2010/09/questions-and-answers-with-the-thimerosal-autism-study-author/

We did do a sub-analysis where AD cases with low cognitive functioning were excluded (see technical report on Monday for full details and results) Analysis of the subgroup of AD cases where children with low cognitive functioning were excluded was motivated by the following concern. Because children who are non-responsive during the assessment process are more difficult to assess, it can sometimes be difficult to determine whether children with severe developmental delay actually have autistic disorder.



(Price et al Pediatrics. 2010 Oct;126(4):656-64. Epub 2010 Sep 13. Prenatal and infant exposure to thimerosal from vaccines and immunoglobulins and risk of autism. http://pediatrics.aappublications.org/cgi/content/abstract/peds.2010-0309v1 )

Liz Ditz said...

Part V and the last

Dear Lisa Jo,

You went on to say:


In the case of autism in children, in my personal opinion, researchers are dealing with an enormous number of variables all at once. It is rare for a researcher to select, for example, a cohort of children who all have the same constellation of symptoms, have received the same therapies, and are attending the same type of school program.


I agree with you -- studies that don't control for confounders as you mentioned aren't very robust. But that's no reason to throw out the scientific method.

Your final comment is your response to a study where you only had access to an abstract.

I want to make one final point, then: you can't really judge research by abstracts. They're useful for pointers as to which studies are worth reading. But you really need to read and study the whole paper, particularly the methods section.

Given that you are the About.com guide on Autism, why don't you see if you can get library access through a Massachusetts university such as Boston University or Boston College? There are a finite number of journals that publish on autism issues. Both are members of http://pubget.com/, PubGet.

http://pubget.com/paper/18612805

Liz Ditz said...

I forgot the link to the Oznoff press release, sorry:

http://www.medpagetoday.com/Pediatrics/Autism/18764

Lisa Jo Rudy said...

Wow, Liz.

To start with: I am commenting on a blog post, not writing an academic paper. Certainly, if I wanted to write an academic paper I would need to do the kind of in-depth work you're describing. But this is a casual blog comment, not a dissertation!

Second, and once again, I am NOT suggesting that the scientific method is worthless or that it should be scrapped. My point, as you have (I believe) noted, is that all too often studies focused on autism do not select people with similar symptoms, backgrounds or treatment experience - and when that is the case, I find it hard to believe that the research will be particularly meaningful or helpful.

Re regression, in addition to some video studies which show individual children who had early signs of autism, there are also video studies that show the opposite. That is: sometimes regression does occur.

This blog post was about the question of whether all truths are equally valid. I don't believe all truths are equally valid, but by the same token I don't believe that the scientific method is the one and only key to understanding what's real, what works, or what's worthwhile.

Science Mom said...

Here's one abstract that might illustrate my point:

J Autism Dev Disord. 2009 Jan;39(1):149-63. Epub 2008 Jul 9.
Effects of a modified milieu therapy intervention on the social communicative behaviors of young children with autism spectrum disorders.

Mancil GR, Conroy MA, Haydon TF.


I'm afraid that doesn't illustrate your point at all considering this was a pilot study to test the generalisability of 2 intervention strategies to 3 children with an autism diagnosis. The meat of any study is going to be in the methods and results so dismissing one based on the abstract, barring it is of absolutely no interest whatsoever, is careless.

Second, and once again, I am NOT suggesting that the scientific method is worthless or that it should be scrapped. My point, as you have (I believe) noted, is that all too often studies focused on autism do not select people with similar symptoms, backgrounds or treatment experience - and when that is the case, I find it hard to believe that the research will be particularly meaningful or helpful.

But you most certainly did suggest that, "While I GRASP the importance of the scientific method, I think it's far better suited to physics, earth science and technology than to biology."

Again, do you have something better in mind or are you still confusing individual study parameters with the overall scientific method?

This blog post was about the question of whether all truths are equally valid. I don't believe all truths are equally valid, but by the same token I don't believe that the scientific method is the one and only key to understanding what's real, what works, or what's worthwhile.

I'm afraid that you are contradicting yourself here and muddying the waters with trying to be equivocal about 'truth'. As I understand Kim's post to be about is that people are trying to coerce truth into their own confirmation biases and thus, is not truth or objective determination but rather truthiness or even magical-thinking. We shouldn't throw ourselves into stasis or reject empirical evidence now for fear that we may have to refine our beliefs later.

Lisa Jo Rudy said...

ok, fine, enough. I've said my piece, you disagree, and I'm not able to spend more time on this particular conversation.

I am not into "dueling research studies," and I certainly don't have the time to spend searching out studies that you'll agree could have been better devised.

I stand by my point that it is very difficult to study a nebulous disorder with unknown or multiple etiologies and a vast range of symptoms and severities through a process that requires comparison of similar or identical subjects in a highly controlled situation.

I stand by my point that this does not invalidate the scientific method, but makes the scientific method extremely difficult to use effectively when studying "children with autism spectrum disorders."

You are welcome to disagree.

Lisa

Liz Ditz said...

Here is one place I get really frustrated. Lisa Jo wrote

Re regression, in addition to some video studies which show individual children who had early signs of autism, there are also video studies that show the opposite. That is: sometimes regression does occur.


But she doesn't cite her countervailing studies. Why not?

I get frustrated when people make claims about scientific evidence but don't cite their sources.

Autism News Beat said...

But she doesn't cite her countervailing studies. Why not?

Because this is just a blog, and Lisa Jo is an unserious blogger. You're holding her to a much higher standard than she is able to deliver. And when she is backed into a corner, and confronted with her inconsistencies and rhetorical dead ends, she takes the unserious blogger's way out: "I don't have time for this!"

This would all be excusable if she wasn't the New York Times autism blogger. I share Liz's frustration.

Parents deserve better.

Lisa Jo Rudy said...

I am NOT a New York Times autism blogger! I am an About.com autism WRITER.

What that means is that (1) while About.com is owned by the New York Times Company, I am not a part of the New York Times, nor do I have access to their resources (nor am I paid their salary)and (2) the vast majority of my writing is NOT related to the blog, but to hundreds of articles on the website.

I'm a serious blogger in the sense that I think about and learn about the topics I blog about, but not in the sense that blogging about autism is my life!

I am frustrated that virtually no one who knows me in the autism world seems to understand that Autism at About.com is a WEBSITE, not a blog. I write the blog as part of my (very part time) job, but I also write at least 3 or 4 ARTICLES every week.

And no, I am not going to take hours of my work day to dig up citations in order to have additional hours of debate with a blog commenter I've never met. I wrote a comment on this blog because I thought the topic was interesting, not in order to start a major research project.

If you are interested in finding someone to trade research citations with, I'm sure you know where to find bloggers that focus on just that type of conversation.

Lisa Rudy

Science Mom said...

And no, I am not going to take hours of my work day to dig up citations in order to have additional hours of debate with a blog commenter I've never met. I wrote a comment on this blog because I thought the topic was interesting, not in order to start a major research project.

I should remind you that you raised the spectre of the inadequacies of the scientific method. The onus is upon you to either a.) realise your error for mistaking the overarching scientific method with individual study parameters or b.) producing some examples of where the scientific method fails. It is intellectually lazy to throw down a gauntlet and then refuse to engage when challenged a bit.

Lisa Jo Rudy said...

"The onus" is on me??

This is a conversation, but apparently you see it as a professional confrontation demanding researched, footnoted citations.

The subject of the blog interests me, and I'm glad to talk about it. But I feel absolutely no obligation or "onus" relative to making comments on a blog!

Folks, this is not a professional conference! It's a bunch of comments on a personal blog. Kim put forth an interesting idea, and we're having an informal conversation about it.

Or at least that is my understanding of what's going on here.

Lisa

Science Mom said...

"The onus" is on me??

Yes, that's correct.

This is a conversation, but apparently you see it as a professional confrontation demanding researched, footnoted citations.

A conversation that you chose to bring into the realm the weakness or even the inadequacy of the scientific method with regards to autism research. When I politely pointed out that your assessment was not correct and to provide an example, instead of re-examining your contention, you became defensive.

The subject of the blog interests me, and I'm glad to talk about it. But I feel absolutely no obligation or "onus" relative to making comments on a blog!

Then don't make overblown statements that you aren't prepared to substantiate.

Folks, this is not a professional conference! It's a bunch of comments on a personal blog. Kim put forth an interesting idea, and we're having an informal conversation about it.

Or at least that is my understanding of what's going on here.


You're right, this isn't a professional conference and had you resided in the realm of philosophical differences, then your feet wouldn't be held to the fire. But since you decided to venture off into a tangent that can and does require evidence to support, you should have done so.

Lisa Jo Rudy said...

OUCH! well, I guess my burning feet and I should scoot off and find a nice cool lake somewhere.

I'm afraid I just don't choose to conform to your rules of confrontation.

Best of luck, person whose name I don't know (ScienceMom).

Cheers,

Lisa

Autism News Beat said...
This comment has been removed by the author.
Emily said...

Kim, your post was thought provoking and generalized, not specific.

Regarding the scientific method...I'm just...aghast. It's the only method of inquiry into natural processes. There isn't another. So, unless autism is supernatural, it's the only way to investigate it appropriately. The failure of a study or studies to appropriately apply the scientific method--if they indeed failed to do so--in no way negates the validity of applying it to studying autism or any other natural phenomenon.

To recap the method, in case anyone cares or needs a refresher (and these are just basic steps, not something researchers carry around on reminder cards):

1. Observe.
2. Formulate a question.
3. Formulate an answer that is an educated guess based on observations/evidence/data.
4. Test in a way that targets proving the answer wrong.
5. Obtain data.
6. Analyze data.
7. Draw conclusions. Lather, rinse, repeat.

There is nothing in that process that negates its application to determining the etiology of autism. Indeed, applying this process again and again and again in different fields (genetics, developmental biology, epidemiology, etc.) is the only way to home in on what underlies autism. Period.