The house was a lovely thatched cabin, situated in a wooded valley between two little hills, set against the spectacular scenary of a snow-capped mountain. He'd been born there, and he'd lived there all his life.
One day, there was a knock on the man's door. He opened it to find two official-looking people carrying clipboards, with serious expressions on their faces.
"Hello, sir. We are officials from the Ministry of Mountains. Sorry it took us so long."
"Oh... excuse me?", the man replied, puzzled.
"We're very sorry we didn't get here earlier."
"I'm afraid that I don't know what you mean. I wasn't expecting any..."
"Hmm. Let me explain. The Ministry of Mountains exists to help people who live on mountains. So, you see, we're here to..."
"Ask for directions to the mountain? It's about 10 miles down the road. Just look up - you can't miss it."
The official looked unamused.
"No. We're here to help you, sir."
"Help you to cope with the rigors of mountain living!" the other chimed in, helpfully.
"But... I don't live on a mountain."
"I'm afraid you do. Look - " and the first official unfolded a large map. "Do you agree that there is a mountain, here?" and she pointed to a spot 10 miles down the road.
"Yes. Actually I just told you about i..."
"...and, do you agree that you live - here?"
"Of course, but..."
"So you do live on the mountain. The very ground beneath our feet right now is part of that mountain nearby."
"No it's not." The man protested. "This is a valley, miles away. I mean just look outside. We're clearly not on a mountain now, are we?"
"How old fashioned. That's what we used to think. But, thanks to advances in geology, we now appreciate that these hills and valleys are merely a part of the mountain."
"Yes!" the other said, whipping out a textbook and becoming increasingly enthusiastic. "You see, a mountain is merely a mass of rock, and this rock extends underground for a considerable distance... It's impossible, really, to draw a line on the map and say categorically, this side is mountain, this isn't. So 'mountains' are an arbitrary construct. 'Hills' are likewise just protrusions of the underlying mountain and..."
The man was even more confused now. "Umm... well, I suppose, technically...but..."
"...so yes, so you do live on a mountain. And we know that this is very difficult. You're exposed to all kinds of dangers like blizzards, altitude sickness, avalanches..."
"Not really. It's nice here. It doesn't even snow most years."
"That's unlikely. You agree that mountains have blizzards and avalanches? Right. And you earlier agreed that there's no dividing line between you and a mountain. So logically..."
"Er..."
"So you are in danger! Don't worry, though. We're here to help. To start off with, we're going to reinforce your house with six tons of cement, to protect you against rockfalls. The construction crew will arrive tomorrow morning. Now, as for those blizzards..."
The man had had enough of this.
"This is absurd. Now look - there is a guy who really does live on top of the mountain in a rickety old shack. Old Grandpa McHermit. He might actually need your help. I don't. Get out! And if I see anyone with a bag of cement tomorrow morning, I'll shove it right up their..."
---
This has already happened, or is happening, to autism, schizophrenia, bipolar disorder, personality disorders, and more.
Now, the "spectrum" or "dimensional" approach has much to recommend it. It's true that diagnostic cutoffs are arbitrary. It's true that the categorical approach doesn't capture the true degree of variation that real people display.
My worry is that these new "spectra" are, in practice, merely the old categories, just bigger. We still think of people as being ill or not-ill, although we may call it on the spectrum or off it. Worse, we still think of "ill" in the same way as we used to i.e. as referring to the most severe end of the spectrum. The only difference is that we've expanded the old category of "ill" to cover more people.
This is evident in the fact that we still use the old categorical labels. It's the autism (or schizophrenia or bipolar) spectrum, even though "autism", in the old sense of a discrete disorder, is now supposed to be just one extreme of that spectrum. Yet the point about an extreme is that it's unusual, so why call it that?
We don't call the rainbow the red spectrum. We don't call height the midget spectrum. We don't call hills part of the mountain spectrum.
The point is, we really think of color and height and altitude as spectra, not as approximations to an extreme point, and that's good, because they are. Now it might well be possible to think of autistic or bipolar traits in the same way - but not if we call them autistic and bipolar traits. And not if we just rename them, while keeping the mental associations the same.
Not unless we can find a way of referring to what's currently called the autism spectrum without making anyone think of autism when they hear it. Similarly for "bipolar" and all the rest. Until we get to that point, there's a real risk that "spectra" will just be big categories.
Edit: This post has been very kindly translated into Hebrew over at the alhasapa.com blog.
23 comments:
That is an interesting way of looking at the spectrum problem. The only thing I would add is that the problem with terminology goes both ways.
There are issues when people think autistic disorder when they hear autism spectrum, that does a disservice to people who aren't as disabled.
But on the flip side, when people talk about the autism spectrum and ignore the people who have "classic" autistic disorder, that does a disservice to those who actually are disabled.
I often run across someone talking about how the autism spectrum is this or that and when I point out that what they are talked about does not apply to people who are actually disabled by their autism, the response is something like "well, I wasn't talking about the severe end of the spectrum".
MJ: Exactly right. I think it's actually the same problem looked at from the other side.
The problem is mixing up people who are severely affected and people who aren't. If you do that you will either a) over-estimate the severity of the mild ones or b) underestimate the severe cases.
Or most likely both, if you settle on the view that everyone is moderately affected.
This post is confusing for me, I'm trying to understand it better.
What I want to say now about the post and the first comment is that it annoys me to compare a spectrum to a line, there is no severe end of the spectrum.
I can only talk about autism, because I am autistic (the disabled type of autistic, if that helps explaining) and I like the term spectrum in my literal mind of seeing a spectrum as a real spectrum, not a imaginary line of exclusion but I noticed many understand it differently, like if there was a line with on one side the "sadly" disabled autistic and the other side the highly functioning not disabled aspie, maybe the spectrum category puts to many people on the category and excludes the ones that are more disabled, in a way I agree, but also that excludes that many are not severely or highly disabled, many are in the middle, many are moderately disabled.
I don't understand what is wrong with the old categorical labels or what is bad about people thinking about autism or bipolar, or the problem with mixing, the problem is the sterotypes and wrong assumptions.
Sorry, my comprehension is not good today.
What you’re describing here with this metaphor applies not only to the ‘spectrum’ approach to mental disorders, but the entire ‘risk factor approach’ introduced into medicine in the 1950s. There’s no longer a distinction between health and illness since we are all ‘at risk’ of having a disease. There’s an excellent account of how this concept entered and came to dominate medicine (using angina pectoris to illustrate) in Making Sense of Illness: Science, Society and Disease (http://amzn.to/mUSg4n) by Robert Aronowitz.
"And never mind autism during the Enlightenment; when we look at contemporary autism through these binary, either/or lenses, we get exactly the goofy, paradoxical absurdity described so well earlier today by Neuroskeptic, in Mountains of Mental Disorders."
http://www.shiftjournal.com/2011/10/12/thinking-in-binary-recently-at-reddi/
Jan: I think the "risk factor approach" got the reductio ad absurdum treatment with Dick Cheney's 1% doctrine:
"If there's a 1% chance that Pakistani scientists are helping al-Qaeda build or develop a nuclear weapon, we have to treat it as a certainty in terms of our response. It's not about our analysis ... It's about our response."
Another example is the one-drop rule in America which held that one drop of ancestral African blood was enough to revoke one's status as a white person.
Personally I like to advocate for an expanding conception of "normal" that comes to encompass autistics but even that's just another maneuver like the one illustrated above. I think the paradigm shift, when it comes, will have to do with a move towards "The Many" and away from "The One" as the dominant archetype, since The One (as an organizing principle) always gives rise to an opposing counterpart. Or at least it's been thus, so I'm told, ever since Satan rose up and got banished into binary opposition. ;-)
Jan Henderson: Thanks, I hadn't heard of that one, I'll take a look.
The focus on risk of disease rather than actual disease is, like the concept of spectra, one of those things that's great in theory, but has a tendency to work out less well.
In theory, thinking of things as spectra is a great idea but it's hard to actually think that way, and it often ends up being a form of categorical thinking but with messier categories.
Likewise, risk of disease is an important concept, so long as we remember that it's different from disease.
I think this is the best explanation of what happened to me in grad school.
First they said I had high-functioning bipolar II disorder. Then, when the meds made me worse and not better, the changed the diagnosis to bipolar I. Then, when the meds they gave me caused me to hallucinate, they changed it schizoaffective disorder and gave me even more meds. In the end, I was taking high doses of at least 8 medications. They changed the meds and the doses every week. They told me that if I didn't take them, they would lock me in the psych unit.
When they kicked me out grad school because I tried to kill myself and heard voices, I lost my insurance. After I maxed out my credit cards paying meds and doctor appointments, I quit taking the meds on the suggestion of my best friend and future husband. The "symptoms" went away almost overnight.
I found out later that 4 to 5 of the meds that I was on at any one time caused suicidal thoughts and behavior in young adults. I also found that one of the meds I was on caused hallucinations. They told me that I needed them because I had hallucinations and was suicidal!
Now, I take birth control pills to manage the PMDD that causes me to have severe mood swings, and I am doing better than I ever did on the meds. The suicidal thoughts went away and never came back.
The pharmaceutical companies made a lot of money off of me, but I lost opportunity to get a PhD and my career in research was ruined. The saddest thing is that those meds could have gone to someone who really needed them. I see truly mentally ill homeless people almost everyday, and it just makes me sad.
I also have two family members who have also been misdiagnosed with bipolar disorder. I found two studies in PubMed that enrolled large numbers of patients diagnosed with bipolar disorder. About half of the patients in both studies did not meet the DSM criteria for bipolar disorder. It scares me that they are doing this to children now. The psychiatrist who misdiagnosed me three times now treats children.
The trouble with a pure spectrum approach is that this is not really the way that we conceive of mental health spectrum conditions. Instead, we think of there being a "yes or no" item, with a majority of the population being in the "no" category, and then a spectrum within the "yes" category.
A better analogy might be to wings. Vehicles either have or do not have wings. Vehicles that do have wings can be classified on the wingspan spectrum.
There may be some mental health conditions that really are pure spectrums - for example, a significant share of ADHD cases might very well simply be the far low end outlier of the Big Five Personality Trait "conscientiousness".
But, even disorders associated with cognitive conditions that we usually do think of on a spectrum, like IQ, often really fit a "yes" or "no" and then a spectrum model. A genuine developmental disability seems etiologically to be something different in kind from merely ending up on the low end of the IQ Bell Curve and often has a specific cause and additional symptoms beyond mere low IQ associated with it. It isn't conceptually incongruous to distinguish between a low intelligence "normal" person with IQ 80, and a "high functioning" person with a well defined developmental disability, cerebral palsy perhaps, who has an IQ 80.
From a nomenclature perspective, I do think it is helpful, at least in common conditions like autism, to attach names to parts of the spectrum like Asperger's or subtypes even while acknowledging the existence of the spectrum. Most people are not fundamentally and naturally dimensional thinkers. People don't see a red maple and think "that's a tree three-fourths along the maple spectrum", they say "red maple" and may never even learn what the whole spectrum looks like until later. Names for portions of spectrums and subtypes is a natural way of retaining back compatibility in the nomenclature. Names for parts of spectrums also encourages identication of non-diagnostic symptoms or common comorbidities by people who deal with that named subset regularly - something less prone to happen if one can't articulate the category in which one sees characteristic symptoms.
Indeed, "subtyping" rather than true dimensionality on a spectrum, is probably more often a helpful approach, so long as the existing of the overarching type is acknowledged. Since mental health conditions are almost always based on symptoms rather than known causes, many, perhaps most, DSM classifications encompass multiple sources of the same symptoms and subtyping provides a research tool to figure out if a general diagnosis is sufficient to be useful or needs to be further categorized before anything useful can be concluded. For example, we've pretty much discerned that anti-social personality disorder really includes more than one completely distinct set of conditions and subtyping has made it possible to discern that - but a simple spectrum based on severity might not have revealed that issue. Sometimes subtypes do correspond with severity spectrums, but as often as not, there are multiple dimensions and severity may not be a particularly important issue. By analogy, it is more helpful to subtype diabetes by Type I and Type II, than it is to distinguish cases primarily by severity.
Re the comment about mixing up people who are severely affected with those who are not, that is tough to define.
For people with "classic" bipolar it is not uncommon to be very ill and then go for a long period without an episode. Inter episode recovery in bipolar is a fact for many of those who are severely affected when experiencing an episode.
I completely agree, I have had the same opinion since high school and my subsequent education and experience has only added evidence that your method would be more accurate and more useful for treatment.
Would you be able to brainstorm some better terminology for characteristic spectrums rather than pathological categories? I would like to find words like height (rather than shortness or tallness) or color (rather than redness). Another issue is that symptoms sometimes cluster and sometimes do not. For example, every combination of sadness, abulia or lethargy, suicidal ideation, self-injury, anhedonia, and others characteristics listed in the DSM or ICD for depression exist in people, with each symptom having various degrees. By people I mean everyone - the cutoff requiring treatment is a very grey line. For some DSM diagnoses (I forget which), two people can have the same diagnosis and have no symptoms with high (or low) levels in common due to this clustering problem.
Here are some of my off-the-cuff ideas for better terminology.
For sadness/happiness, there could be "mood level" or "mood elevation" or "mood spectrum;" this isn't great because there are more moods than just happiness and sadness, it's not linear. For lethargy/mania there could be "motivation level." For theory-of-mind issues related to autism, there could be "sympathy level" or "other-person identification level" (what problems would a very high level of other-person identification cause?).
Could you offer some words of the sort that you think might work better?
I realize I'm a little late to the party, but I have two questions about this post that I was really hoping you could answer. I've read the other comments, and as far as I can tell, they don't address what I'm going to ask.
1) I'm a little unclear on what you're trying to express. The story at the beginning seems to be suggesting that the problem with spectrum disorders is that treatment gets directed away from people who need it in favor of treating anyone who falls on the spectrum, even if they function fine without treatment. But then in your explanation, you seem to say that the real problem is that people still view spectra as the old categories. Which of these, or both, is the point that you're trying to make?
2) I'm of the (admittedly uneducated) opinion that the increase in spectrum disorders has at least some of its roots in the pharmaceutical industries pressure to over-diagnose. Prescription drugs can not be prescribed unless there is some documentable disorder. So pharmaceutical companies spend billions of dollars working to "invent" new disorders and broaden the diagnostic criteria of existing disorders. Now, anyone on the ADD disorder spectrum, say, can be given drugs that are shown to help people with severe, pathological ADD. If this trend continues just a little bit more, soon there will be no person on earth who can't be prescribed to.
I'm a lowly master's candidate in neuroscience, so I don't know my material very well. If you have some spare time, could you please briefly comment if this idea has any major flaws?
Peter: Thanks for the comments:
1) I think they're both the same thing. In theory, the spectrum view means that we ought to treat everyone individually, according to their position on the spectrum.
However my worry is that in practice this often means treating everyone "on the spectrum" (which means everyone over a certain cutoff) as if they had the old categorical diagnosis.
This intellectual confusion leads to the practical problem of over-treatment of some and diversion of attention away from others.
2) I think it's a complicated issue. The original motivation for the spectrum idea was a very sensible one, namely that most things are spectra in the sense that there are no clear boundaries between health and illness. That's true of psychiatry and of many other branches of medicine e.g. obesity, heart disease, blood pressure, dementia... wherever you draw the line and say "this side is pathological", it's going to be arbitrary.
They say that a healthy BMI is 18-25, but not because there is some huge difference between 24.9 and 25.1, or whatever.
So it makes perfect sense to start down that road - but if you're not careful it leads you to wanting to treat everyone (because there's no clear point at which you can say "Here, and no further"). And clearly Pharma have an interest in going down that road as far as possible.
Another problem with the 'spectrum' model is that it is not how mental health services work.
Generally speaking much of the problems of a categorical system are avoided in everyday practice because the rigid criteria of DSM and ICD are only used in research. But what this means is that when someone presents to mental health services they will consider both symptom severity and functional impairment.
If your symptoms are really bad you'll fit quite comfortably in the categorical definition of schizophrenia or depression or whatever. If your symptoms don't quite meet the criteria but your life is being severely disrupted by them then the clinicians will likely treat you based on their best guess as to what diagnosis best fits, and may or may not decide to assign a categorical diagnosis.
If you start labelling people in the 'normal', non-functionally impaired part of the population as being on the 'spectrum' of some disorder then that label immediately loses its utility.
Personality disorders present one of the areas in psychiatry where I think the spectrum approach is more tolerated - and there certainly I think it is often more helpful to look at the level of need and distress someone has, and then to identify if these flow from various personality traits that are more or less dysfunctional whether or not a formal PD diagnosis can be made.
Another issue spectrums raise in terms of interface with the health care system is the use of impairment as the principle line drawing criterion between pathology and non-pathology. One could do worse, but one could imagine both a more expansive means of line drawing (patient would benefit from treatment, whether or not actually impaired right now), or line drawing that is less tied to the demands placed on the individual that cause symptoms to be impairing or not impairing in context and instead focusing on symptoms.
Hearing voices may not be impairing if you are a performing psychic, but that shouldn't mean that you don't have schizophrenia as a matter of diagnostic practice. By analogy, a Sumo wrestler may still be obsese and need to treat that medical condition even if there are benefits that come with the physical condition.
As comparison, take the neurological disease of multiple sclerorsis. We know a fair bit about how the disease works and distinct diagnostic criteria. It is very uncommon for someone to be misdiagnosed with MS. The same, I think, can't be said about most psychiatric diagnoses. (Not bashing, going somewhere with this.)
So say you meet someone with MS. What does that tell you about them? What problems do they have? You can't say. You might guess that they tire much faster than most people and that they probably don't do well in heat. (Those symptoms occur in 80+%.) To guess anything else, though, would be folly. Though MS is well-known and pretty definitively diagnosed, that tells you almost nothing about how it affects anyone with it. MS isn't a spectrum, but it effects people in wildly varying ways.
I do think it'd be a pity if people would think "autism spectrum disorder" meant one thing, one set of symptoms. I hardly think that problem is confined to spectrum disorders, though.
Alan Francis who was the lead editor responsible for the introduction of DSM-IV has become its lead critic. He has stated that the field trials of DSM-IV failed to predict the false epidemics of autism, attentional and bi-polar disorder. What should have been the crowning achievment of his distinguished career in psychiatry he now considers his biggest failure:
http://www.wired.com/magazine/2010/12/ff_dsmv/all/1
RAJ: I don't think DSM-IV can be blamed for all this. Right at the start of the book it specifically warns people not to use the diagnoses in a mechanical fashion, applying the symptom criteria without clinical judgement.
Which is what everyone went out and did - and lo and behold it turns out everyone's got DSM-IV disorders!
Certainly DSM-IV can be criticized in many respects, but if people actually followed that instruction at the start, a lot of problems would have been avoided.
Old Grandpa McHermit..."might actually need your help." Then again, he didn't get to be an old man living on a mountain without being able to adapt.
Jus' sayin...
Perhaps we should discard encompassing labels altogether and target manifestations that meet the definition of pathology as compromised quality of life.
My autistic son has a specific take on the "spectrum as line" concept. It is here: http://daisymayfattypants.blogspot.com/2011/02/from-autistic-boy-different-perspective.html
I understand what you're saying with this post, and tend to agree with you. I certainly do not think everybody is on a spectrum for a mental illness. At the same time, as someone who is diagnosed with Schizoaffective Disorder but has many of the same symptoms as someone with Schizophrenia, I think that in the case of these two disorders, there is a sort of spectrum. My diagnosis changed from Schizophrenia to Schizoaffective only after a more detailed history was taken and it was understood that I had many periods of severe depression and one period of mania. The thing is, what disrupts my life more than anything is not moods, but psychosis. So I like when experts such as Dr. E. Fuller Torrey describe Schizoaffective Disorder as a type of Schizophrenia. I am not an expert at all, so I do not know if this is different from the spectrum concept, but I don't think that there is a huge difference between these two disorders other than the presence of mood issues in SZA.
Jen: I completely agree that spectra are a useful concept when we're talking about the differences and similarities between diagnoses :)
My only worry is that they can become risky when applied to illness vs. non-illness.
Brilliant post. I never even thought of that. I propose renaming autism the 'sensitivity spectrum'.
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