Raising public awareness on ADD without hyperactivity and SCT

My personal perspective

On this site, I intermingle personal experience, research, and a little humor to explain what experts have dubbed “sluggish cognitive tempo,” a subtype of attention deficit disorder or ADD. 1

Along with inattentive symptoms, people with SCT tend to be quiet, daydreamy, shy, passive, and introspective, and they appear quite different compared to those who are hyperactive. Dr. Russell Barkley has described SCT as the “antithesis” of the traditionally held view of ADHD.

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau 10

My goals and objectives

I want to raise public awareness on the condition unofficially known as sluggish cognitive tempo (SCT), and more generally, attention deficit disorder without hyperactivity (ADD).

I hope that one day SCT get recognized as an official developmental condition so patients having the disorder can have wider access to support and treatments to improve their quality of life.

I want to give a voice to people who may otherwise not have one. I feel that others who have a situation similar to mine have been mislabeled or misdiagnosed meaning that they never receive the help they need to reach their full potential.

Due to the large scale nature of the internet, I am able to reach the small subset of individuals and their families who can relate to me, whereas I would not be able to accomplish this in a local setting.

I wrote this web log partly for personal reasons to help organize my disorganized thoughts, and I view these writings as a form of self-therapy.

Finding out about inattentive ADD and SCT in particular has been a life changing experience for me, and it explains a lifetime of extreme silence, passivity, and day-to-day challenges. Hopefully others can benefit from learning about SCT in the same way that I benefited.

A point I want to emphasize early on (though I do discuss in more detail later): One of the reasons why SCT has not been elevated to an official status is because experts are having a difficult time trying to categorize it in relation to other attention disorders. A difficulty in labeling or taxonomy should not cause decision makers to ignore or reject a construct that has been validated multiples times. 3 5 7 8 9

Snapshots of a kid with inattentive ADD

Recollecting memories of my younger self

If you’re like me, silent reading time in school was a time to meditate rather than actually doing any productive reading (as if your brain wasn’t already in a state of perpetual mediation the rest of the time.) If you’re like me, studying math was the purest example of information “going in one ear and out the other.” If you’re like me, you have never heard of a thing called “ADD without hyperactivity,” and have always believed that there was just something fundamentally wrong with you.

Upon remembering how I used to be, it is clear that if I wasn’t distracted by my internal thoughts, my attention was everywhere except where it ought to be. I would focus on the events directly in my field of view such as looking at the two girls braiding one another’s hair. Or, in another instance during story time, I would be staring at the kid who is laughing at the boy in front because his underwear is showing while sitting Indian-style, and this is all happening when I should really be paying more attention to the story. (See more personal past recollections here).

In conjuring up many past moments I am able to create a “life collage” of events that represent what I was then and what I am now. One by one, each of these recollections represents a fragment that adds weight to my hypothetical ADD-SCT scale. Small slips of attention add just a little bit of weight while large deficits tip the scale by much more. Placing the pieces together from various occasions and ages of development and looking at the end result very strongly resembles the SCT construct. It is not until I learned about the SCT construct was I able to make sense out of my various idiosyncrasies. Therefore, I believe that making SCT official has a clinical value.

Inattention & hyperactivity: Two sides of the same coin?

It is oftentimes hard to miss the hyperactive kid with ADHD. The hyperactive kid talks excessively, fidgets a lot, gets out of his seat unannounced, interrupts others, and does not wait his turn. From my experience remembering a sixth grade classmate with severe ADHD, every student knew exactly who that kid was. He was a certain kind of infamous.

On the other side of the attention spectrum, is the shy inattentive kid who is usually very easy to miss and not quite so infamous. Said kid may miss the teacher’s instructions because she was preoccupied with something else in her mind though she does not say much and is no immediate disturbance to the learning environment.

Many observers have suggested that the passive student who has her head in the sky and the in-your-face hyperactive kid appear quite different, but both individuals actually have different manifestations of the same problem.

Support forum user Joe Iannandrea paints this concept quite colorfully:

“Imagine that your thoughts are cows. To keep the cows where they’re supposed to be, your mind comes equipped with a fence, but if the gate isn’t working properly you suffer from an Animal Disappearing Dilemma (or ADD for short). Your cows may tend to wander towards the river and end up all wet, or they may tend to wander towards the desert and end up dehydrated. While having either parched cows and water-logged cows may sound like opposite problems and may need to be dealt with differently once it happens, in either case the best way to keep the problem from getting out of hand is to deal with that gate.”

To further elaborate on this analogy, in order to sustain attention one must be skilled at controlling the “gate” in one’s mind so that the gate opens to focus in on salient information, while also closing to block off distractions. ADD/ADHD then, is a core problem with managing information flow.

Let’s hold on to the idea for a moment that hyperactivity and inattentiveness are separate presentations of the same underlying disorder. To grandly simplify we can say, “They look different but they are actually the same.” What other conditions seem like opposite manifestations of the same problem? Consider autism which is another development disorder that begins in childhood. On one end are those with classic autism who have very little or no verbal communication skills. On the other end are high functioning individuals with Asperger’s who have no language delays and may speak excessively with extreme verbosity. It is often important to see beyond the surface, and dig into the underlying problem. In the case of autistic spectrum disorders, the core problem that individuals have is a lack of a “theory of mind” or the inability to see other people as humans with separate thoughts than one’s own.

The opposing view: ADHD with hyperactivity and ADD without hyperactivity are NOT the same disorder

The Diagnostic and Statistical Manual of Mental Disorders or DSM-IV is the mental health bible that psychologists use to help make diagnoses. It groups various developmental, cognitive, and emotional disorders into various categories.

The DSM-IV manual groups symptoms of inattention and hyperactivity into one large category called Attention Deficit/Hyperactivity Disorder. It then further divides the AD/HD diagnosis into three subtypes – Predominately Inattentive, Predominately Hyperactive, and Combined Type.

Some people – experts and laypeople alike – have voiced their opinions against placing inattentive individuals without any hyperactivity under an umbrella category that has the word “hyperactivity” in it. For one, it creates a general public misconception that hyperactivity is a necessary constituent of an attention disorder. (One disgruntled person with inattentive ADD voiced his/her frustrations rather bluntly with a post titled “ADHD: They Can Take Their H and Shove It”).

It is not just the ADD “patients” who are rebelling against the label they are given. Many experts hold that there is valid evidence to believe that ADD and ADHD should be separated. In 2005, child development researcher Adele Diamond argued that “attention deficit hyperactivity disorder without hyperactivity” is a distinct condition from cases where hyperactivity in present. Attention disorder specialist Russell Barkley believes that inattention in the absence of hyperactivity is better described with its own title of “sluggish cognitive tempo.”

Benefits of SCT as a diagnostic tool

“The material I find about “ADHD” doesn’t speak to my experience. I feel like it’s about other people. I would like to split off my condition so that I feel that I and others with SCT can have our experience validated.” – ADDForums user TheScaTman

One of the goals of the scientific method is to divide information into increasingly more precise classifications, and I believe SCT is a better representation of a subset of people. ADHD-PI, which is the closest official diagnosis that resembles SCT, is a somewhat accurate identifier but it is incomplete; the reason being is because it does not address the full spectrum of how a non-externalizing attention disorder can look like.

SCT: It’s about the awareness, not the label

One of my points that I stated in the introduction of this commentary was that I hope that SCT gets recognized as an official developmental condition so that it will lead to better support and treatments. However, I want to be clear that the classification or label is not the main point of relevance. What I really mean when referring to SCT is the cluster of symptoms that include hypoactivity, daydreaming, working memory problems, brain fog, mental wandering, et cetera.

If passiveness, daydreaming, and processing difficulties are symptoms that are added to the inattentive ADD category, I think that would be sufficient. I am actually ambivalent towards the label “Sluggish Cognitive Tempo” and have mixed opinions on it. One commentator has said that he is perfectly content with the label and believes it describes his non sequitur thinking style quite well while another commentator said “Whoever thought of the name is inconsiderate and I’m furious with that person right now.” Namazu, an ADDForums.com moderator, suggests that the label is inaccurate and hopes that “The Powers That Be will think up an accurate-but-less-awful-sounding name!” More recently, Barkley suggested changing the name from “Sluggish Cognitive Tempo” (SCT) to “Concentration Deficit Disorder” (CDD). 2 Either way, I would strongly echo member SirSleepAlot’s view that “it is not about the label it is about the awareness.”

SCT and the appeal for official status

Ultimately, it doesn’t really matter if SCT is called ADD or Condition XYZ, but that its symptoms are recognized and placed in an official manual. The reason why having the symptoms in an official manual is so important is that more professionals such as teachers, nurses, psychologist, and psychiatrists will be able to recognize them. There is no official help for a non-official condition.

One user brings up a noteworthy point: (edited for clarity)

“The second step after finding the disorder that fits you is getting treatment from a qualified professional, and most of them have never heard of SCT. And even if they have it’s not in the DSM-IV so when you mention it they’ll look at you like you have Googleitis.”— daylate$short

The search for accurate classifications

SCT vs. ADD and ADHD: What’s in a name?

The argument: If ADHD with hyperactivity and ADD without hyperactivity are not the same disorder, then they should not be classified as such. Furthermore, if SCT and inattentive ADD are separate disorders, they should be separated as such as well despite their similarities; similarities between SCT and ADD are better viewed as comorbidities (i.e. such as anxiety and depression).

It seems that as more current empirical studies are completed, there is a growing consensus that ADD and ADHD are separate conditions with different biology and different responses to treatment. One of the problems that researchers are trying to untangle is where the sluggish cognitive tempo construct fits in with the previous constructs of ADHD or ADD. Is SCT a subset of ADD or is it a different disorder together?

Benefits of keeping ADD and SCT together

If SCT gets completely divorced from the attention deficit disorders then there may be negative consequences for those with SCT. For example, there is considerable overlap between inattentive ADD and SCT. Empirical studies have found out that 30-50% of those with inattentive ADD have SCT symptoms. It may follow that some treatments for ADD may help those with SCT so if there is a categorical link between the two disorders then it will be easier for clinicians to prescribe ADD treatments for SCT and vise-versa. If there is not an official categorical link between the conditions, then clinicians may have to result to a treatment plan that is technically “off-label” and some clinicians may be hesitant to do that. Because there is already much documentation on inattentive ADD relative to SCT, the patient diagnosed as having SCT symptoms (or whatever the final label may be) will have more immediate benefits if ADD and SCT are tied together.

Benefits of keeping ADD and SCT apart

In the short term, having SCT and ADD categorically tied together will yield more immediate benefits to the patient with SCT symptoms because there is a body of literature that already exists on ADD. However, in the long term there may be a stronger argument for keeping the disorders apart if the empirical research supports separating the two conditions. Having SCT in its own category will attract researchers to develop novel treatments for a disorder that is newly classified. The reason why I say the benefits will occur within a long term period is because treatments, especially drug interventions, must pass through rigorous FDA testing which may take over a decade and cost close to $2 billion dollars before being available on the market. 11

ADDForums member Captain Obvious makes a point about how separating SCT can reap benefits:

“If you separate SCT (or, preferably, the broader classification of ADHD-inattentive) from ADHD completely, now there is incentive for research. Now you have the “Omg, that fits me perfectly” people getting their own label. You’re no longer doing research for 1/8th of a disease population. You’re doing research for 8/8ths of a new disease.”

My opinion on classifications: Let’s agree to disagree

It appears that most of the empirical research deals with the taxonomy of where SCT belongs rather than actual qualitative accounts of the disorder. To me, it seems rather difficult and almost non-productive to pinpoint precisely where SCT falls in relation to ADD or ADHD. I say this in light of the fact that SCT has been described since the 1980s but because of confusion and classification it has not been elevated to an official status yet.

A difficulty in labeling or taxonomy should not cause decision makers to ignore or reject a construct that has been validated multiples times. Finding out about absolute truth was never a goal of the scientific method nor should it ever be; it is okay to make a mistake and then make a revision in light of new information. New discoveries are frequently being made and this is one of the reasons why biology and chemistry and physics textbooks are revised and recirculated as new editions. This is one of the reasons why the DSM is updated every so many years as well.

Complications of classification

The classification and reclassification of Pluto is a well-known example of how challenging it is to find a consensus among scientists. When Pluto was first discovered it was known as the ninth major planet from the sun, but upon discovery of new details it was then reclassified as a dwarf or minor planet by an international organization. Even so, there are scientists who continue to disagree with Pluto’s change of status.

Some final words

I view SCT as more of a “life problem” rather than a strictly “academic problem” which is different than what much of the AD/HD literature implies. It is a multi-faceted struggle. Therefore the treatment plans and interventions designed for SCT should be a reflection of this distinction. I was able to do relatively well in school because I worked within my boundaries of what I can and cannot do. This involved practice though and included much failed attempts and frustrations because I had little support. Things get done, but sometimes it just takes an obscene amount of time to get those things done. (Damn, why does such a thing like time even have to exist?)

To me, ADD-SCT is a problem with “consistent inconsistency” with regards to work output. This results in alternating peaks and valleys of high and low productivity. Another problematic SCT issue that I relate to is a sort of “nearsightedness of thinking” that keeps one from planning ahead and looking to the future. It is not as if I am ignorant of these issues. On the contrary, I know too much relative to what I can manage to put to use. ADHD has been said to be a difficulty of “doing what you know, not knowing what to do.” In many ways, I think this description is spot-on, inattentive ADD and SCT included. For example, for an online course one of my professors told me that I clearly grasped some higher level concepts that many others have never touched. The problem I have, however, is that my actual instantaneous moment-by-moment ability to attend to information is relatively poor. This is the heart of SCT from my experience.

As of currently (early 2014), I suspect that most of the people who can relate to the SCT symptoms are relatively high functioning adults. This is much due to information privilege and access as well as the ability to do independent research. That is, a condition that is only considered a prospective construct is only known by a handful of people. However, a large benefit to elevating SCT to official status, whether as a part of ADHD-PI or as a separate condition, is helping the children with SCT symptoms who may be struggling in school and could use some guidance. There are indeed legitimate reasons for why a student may appear uninterested or unmotivated that are not due to a simple lack of willpower.

Notes & References