On a limb: Despite resistance, a group of researchers is investigating the possibility of a new mental health disorder

For Abby Williard, school always felt like a slog. Growing up in a small town in central Pennsylvania, Williard couldn’t seem to complete her schoolwork or stop daydreaming in class. Although she has anxiety and depression, she felt like something else was at play.

“I would cry in class because I just couldn’t handle it, I couldn’t take it,” she said. 

At points, Williard gave up on trying to succeed in school: She nearly failed several classes and was so quiet that teachers would sometimes mark her absent. But one day when she was 16, years of confusion gave way to “a huge moment of clarity.”

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Williard took note as her mother mentioned a file from her school psychologist during a counseling appointment. She watched as her mom handed the file to the social worker to make a copy, then stuck the papers back in her purse. Later that night, Williard rummaged through the purse to find the file, a psychological evaluation from when she was 12. On that file was a mysterious classification, one neither her mother nor her school’s psychologist had since talked to her about: sluggish cognitive tempo.

“I had never heard of that my whole life,” Williard, now 19, recalled. 

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Williard sometimes thought that she had ADHD, or attention deficit hyperactivity disorder — though she was never diagnosed — because she had trouble paying attention, but other symptoms, like hyperactivity, didn’t fit her well. As she researched sluggish cognitive tempo, or SCT, online, the symptoms seemed just right: a problem with focusing was there, too, but also daydreaming, slow or “foggy” thinking, and a general lack of energy.

“I was just like, oh, my gosh, that makes so much sense,” Williard said. “Everything just started to fall into place.”

But SCT is not an officially recognized diagnosis. It’s currently what’s called a clinical construct — a term used in psychology to define a group of behaviors. Since its emergence nearly four decades ago, the study of SCT has been led by a small group of researchers, chief among them a controversial psychologist and ADHD expert who is adamant that SCT is a separate disorder potentially affecting millions of children and adults. If SCT became an official diagnosis, proponents argue, it could make it easier for those with symptoms of the construct to get the help they need, whether that be assistance in school or work or a medication that is more likely to work for them. But many researchers say the study of SCT, which is still in its early stages, can’t yet support a formal diagnosis. Critics dismiss the construct as fatally flawed and argue that SCT is an outgrowth of misdiagnosis of ADHD that could result in many being prescribed inappropriate medications.

While SCT remains in categorical limbo, Williard and others aren’t waiting for a scientific consensus. Many have found validation in a growing online community for SCT — a Facebook group counts more than 800 members, while an SCT community on Reddit has over 4,000. In their view, SCT has negatively shaped their lives, affecting everything from their mental health to their ability to pursue a fulfilling career. And in the absence of approved treatments, members crowdsource potential therapies. 

“It really was nice to find other people that were like me,” said Williard.

The leading advocate for SCT, clinical psychologist Russell Barkley of Virginia Commonwealth University Medical Center, has been working for years to get the construct recognized and investigated by other psychologists. He’s written extensively on SCT, both in academic journals and online resources; given numerous talks on the construct; and has developed a rating scale for SCT in children and another for adults. 

In the 1980s, a debate emerged among ADHD researchers as to whether two subtypes of ADHD, called predominantly hyperactive/impulsive and predominantly inattentive, could actually be separate disorders. Ever since, some researchers have examined that predominantly inattentive subtype and found that related characteristics — those eventually associated with SCT, like drowsiness, daydreaming, and lack of energy — seemed to be different than those associated with ADHD. The name sluggish cognitive tempo, Barkley said, comes from a 1984 dissertation and a related 1986 study that tested a teachers’ rating scale to identify traits associated with student behavioral concerns. One of these was “sluggish tempo” and seemed to define a distinct group of students. 

Stirred by an influential 2001 paper on differences between predominantly inattentive ADHD and its other subtypes, Barkley argued in a related commentary that some people with symptoms of this inattentive subtype were very different than others with ADHD, which he thought could indicate that the inattentive subtype was a distinct disorder. Over time, he said he and others found that what distinguished these people were their SCT symptoms, and that it could be SCT, not inattentive ADHD, that was separate. By 2013, he had developed rating scales for SCT in both adults and children, which includes symptoms like losing one’s train of thought and tending to stare off into space. 

“I’m willing to go out on that limb, as I did in the year [2001],” Barkley said in an interview. “If this pattern continues the way it is right now, this will be a new disorder.” 

But Barkley is one of the few, if not the only researcher who is willing to call SCT a disorder. Even Stephen Becker, an associative professor of pediatrics at the Center for ADHD at Cincinnati Children’s Hospital Medical Center and a frequent collaborator of Barkley’s, believes it is too soon.

“I think there’s just a huge amount of research that needs to be done to support a new mental health disorder,” said Becker. “It’s still quite a small field.”

“I’m willing to go out on that limb, as I did in the year [2001]. If this pattern continues the way it is right now, this will be a new disorder.”

Russell Barkley, Virginia Commonwealth University Medical Center

One of the most vehement SCT critics is Allen Frances, a professor emeritus and former chair of the department of psychiatry at Duke University. As the chair of the task force that put together the fourth revision of what’s known as the DSM, the official diagnostic manual for mental disorders, he has seen hundreds of proposals for potential new diagnoses, and he said in an interview that SCT is “one of the dumbest.” 

Frances is also the author of the 2013 book “Saving Normal,” in which he argues the DSM pathologizes too many traits previously considered “normal.” He said that SCT symptoms are associated with a vast number of both neurological and physical conditions, from the effects of a seizure to hypothyroidism to depression — even the “brain fog” recently associated with Covid-19.

“That should itself be a wake-up call for how silly this diagnosis is,” said Frances. “You wouldn’t want to be focusing on the sluggish cognitive phenomena on their own. You’d say, what’s causing it?”

Frances said that he doesn’t think SCT ever will or should be in the DSM, given that symptoms of SCT are already covered in the diagnostic criteria for inattentive ADHD, although many who research SCT say the construct is distinct.

“I think the concept is so fatally flawed that there’s no amount of research that could ever rescue it,” said Frances.

Specialized researchers, like those looking at SCT, Frances said, can sometimes become too attached to a construct or condition that they’ve devoted so much of their time and energy to studying. 

“This is their baby,” he said. “They see all the benefits that can accrue from the diagnosis they’re suggesting, and almost always neglect the risks and unintended consequences.”  

“I think the concept is so fatally flawed that there’s no amount of research that could ever rescue it.”

Allen Frances, professor emeritus and former chair of the department of psychiatry at Duke

Alan Schwarz, whose 2016 book “ADHD Nation” examined misdiagnosis of the disorder, said that same issue needs to be considered alongside evaluating SCT. After the Journal of Abnormal Child Psychology devoted a special issue to SCT in 2014, Schwarz wrote an article for the New York Times that raised questions about misdiagnosis and overprescribing medicines for ADHD in children extending to the new phenomenon of SCT. 

“I certainly am in no position to deny that there are people, not only children but adults probably also, [who] struggle with tasks large and small … and that we should try to help them,” Schwarz said in an interview. But codifying SCT as a disorder, he said, “is a very significant step when the disorders already created appear to be massively misdiagnosed.” At the very least, he said, the issue of misdiagnosis in ADHD should be part of the conversation around SCT.

“It would seem reasonable to ask for both conversations to take place,” he said.

Frances has also expressed concern that an SCT diagnosis could lead people to be prescribed stimulants and other drugs inappropriately, an issue often raised about the treatment of ADHD and explored in “ADHD Nation.”

Barkley refuted the notion that there is widespread overdiagnosis or misdiagnosis with ADHD, asserting that research suggests up to 20% of children and 80% adults with ADHD remain undiagnosed. 

“The evidence for overdiagnosis just doesn’t hold up,” said Barkley, although he said he thinks the discussion is still one worth having, and that there could be instances where it does happen. 

Barkley stressed that SCT involves not just one or two symptoms; his rating scale for children uses 12 symptoms, and other studies have used as many as 15. 

“No single symptom identifies this disorder,” he said. “The frequency of the symptoms, the number of symptoms, and their severity, have to distinguish you from the general population.”

Barkley also argued that the fact that SCT could be associated with other conditions does not necessarily undermine its validity. He said that many other mental disorders can either occur on their own or be secondary to another event, citing ADHD symptoms arising after a traumatic brain injury or postpartum depression.

He also dismissed some critics, particularly Schwarz, as sympathizing with Scientology, which denies the existence of mental disorders.

“I am as much a Scientologist as I am a grapefruit,” said Schwarz.

Much of the research on SCT is focused on verifying that the construct includes a consistent set of symptoms. In a July 2020 study, Becker and his colleagues found a questionnaire allowed teachers to accurately distinguish elementary school children with SCT and inattentive ADHD symptoms. The survey asked teachers to identify if students displayed any of 15 traits associated with SCT (including increased daydreaming, frequently staring into space, and low activity levels), as well as nine associated with inattentive ADHD (such as difficulty sustaining attention, poor organizational skills, and becoming easily distracted). The researchers also found that both groups of students tended to struggle socially and academically. 

Becker said research to refine how a construct is measured is a “foundational aspect” of the study of SCT and other clinical constructs.

“The study really was to document that teachers can reliably assess sluggish cognitive tempo, and that when you get a large number of teachers to complete rating scales, [SCT] is different from ADHD,” said Becker.

While the study, which included over 7,000 students, is one of the most comprehensive measurement studies on SCT, Becker emphasized it is far from definitive. The study only surveyed teachers, not parents, and did not consider diagnoses of learning disorders like dyslexia. 

Not all research provides straightforward support of SCT’s validity, such as studies of the construct’s longitudinal stability. In a 2019 study, Alex Vu, a doctoral student at Case Western Reserve University who studied SCT as part of his master’s thesis, examined how consistent five SCT characteristics (staring blankly, underactivity, daydreaming, apathetic attitude, and confusion) were among a cohort of 639 twins who were evaluated annually between the ages of 6 and 12. Vu and his colleagues found that SCT symptoms were more strongly evident in the children in some years, then were less noticeable in others. 

“If SCT had a similar stability pattern to ADHD, it’s sort of more evidence for its legitimacy, you might say, as a construct, if it persists through time,” Vu said. Other research has found that SCT does have some longitudinal stability. 

Vu’s study did find that SCT symptoms were consistently observed with symptoms of anxiety and depression, and many SCT studies have observed the same link. Other research has found that SCT appears to be associated with but distinct from anxiety and depression, which researchers argue speaks to SCT’s validity as a construct and the harmful impact it could have on a person’s life. Some research also suggests that many people with ADHD can also have SCT. Lisa Jacobson, a clinical neuropsychologist at the Kennedy Krieger Institute in Baltimore, and colleagues found in a 2019 study that children with SCT symptoms tended to score significantly worse on timed reading and math assessments compared to their results on untimed tests. Several other studies have suggested that SCT can affect academic performance.

While research progresses, thousands of people who identify with SCT are banding together in virtual spaces, on sites like Facebook and Reddit, both to find community and to discuss potential treatments.

“We’re all just kind of like, well, we’re in the same boat,” said Ashley Steele, 25, a student at Tulsa Community College in Oklahoma. “How the hell do we get out of it?” 

Most conversations are related to possible treatments, with people recommending prescription drugs, nutritional supplements, mental exercises, lifestyle changes, and forms of naturopathic medicine. However, there are no approved drugs for SCT and few studies have evaluated any medication’s impact on SCT, although one study has suggested that a drug called Strattera, manufactured by Eli Lilly, could help reduce SCT symptoms. Other studies have shown that methylphenidate, a stimulant often called by the brand name Ritalin and commonly used to treat ADHD, may not work as well for those with SCT. If true, SCT researchers say, that makes it all the more crucial to investigate treatments that could work. (Barkley has received substantial funding from Eli Lilly for speaking and consulting, including over $100,000 between 2009 and 2012, and has worked with other drug companies, such as Shire, Novartis, and Abbott, although he said he does not endorse any particular medication as a treatment for SCT.) 

Steele, a member of Reddit groups related to SCT and to brain fog, said she has ADHD and the math learning disorder dyscalculia in addition to SCT. In high school, she switched from attending in-person to online classes, a move that was primarily for social reasons, but she also thought it might improve her academic performance. She said she felt so depleted of energy that trying to think through schoolwork felt like “being stuck in quicksand.”

“No matter what you do, no matter how hard you try, you can’t pull yourself out and get moving,” said Steele, who is currently taking a semester off from college after finding it difficult to complete classes virtually amid the stresses of the Covid-19 pandemic. She attributes a lot of that difficulty to her SCT and ADHD, and said she has found consolation in the online communities. 

“The people on there have some really good advice and experiences,” she said.

Brian Brady, a 29-year-old park ranger in Monmouth County, N.J., is part of the largest Facebook group for SCT. He said it helps to hear from other people like him.  

“I feel like I have to put in a lot of work to do sometimes simple things,” he said. “It’s just kind of nice to hear from people who sort of have the same kind of thing going on.”

He said he worries that his SCT will impact his career: His difficulties with organization and focus proved problematic in office jobs, and though he said he struggles less now, he isn’t fully satisfied with his current position. 

“I don’t really feel like I’ve been able to get a job that I really love,” he said. “I’m kind of stuck.”

Brady said he was diagnosed with ADHD when he was around 8, but after recently finding information on SCT online, he felt like it was a better match. He said he is normally distracted by his own thoughts and daydreams, rather than by his surroundings. He also said he’s always felt fatigued and drowsy. 

“I related to a lot of the symptoms more,” he said.

Barkley said he doesn’t encourage people to use social media forums in place of medical professionals. “Periodically we just have to caution people, don’t self-diagnose,” he said. He said that these online groups can be a useful tool for people to identify if they may have SCT symptoms, but after they do, they should “go see somebody who’s more of an expert than your Reddit buddy on diagnosis and management.” 

“Self-diagnosis is a start, not an endpoint,” he said.

Becker, of Cincinnati Children’s Hospital, said he is optimistic for the future of research on the construct. He hopes studies will delve into the link between SCT and depression and will investigate how factors like school setting and environmental exposures could influence SCT. He also thinks neuro-imaging and genetics research techniques could play an important part. 

“Hopefully in the next five to 10 years, we will have a much better understanding of what SCT is, how it impacts people’s lives, and how we might be able to treat it and reduce its negative impact on people’s daily lives,” said Becker. 

Sonia Gaur, a clinical assistant professor of psychiatry and behavioral sciences at Stanford University’s School of Medicine, said she would like to see studies that examine a diverse set of participants, particularly in terms of race and ethnicity. She also said she would like to see more research into the treatment and assessment of patients with SCT in a clinical setting, something she recently examined in her own small study

“I couldn’t come across a single paper that would tell me how to run my ADHD clinic,” said Gaur. 

SCT may also be in for a name change: A recently formed task force with a number of prominent SCT researchers, led by Becker, is looking into an alternative term for the construct. Some researchers, including Barkley, argue that the name sluggish cognitive tempo could lead people to conflate it with intellectual disability, that it is somewhat offensive, and that it may not encompass the construct’s full symptoms and impacts accurately. The task force will also investigate gaps in research and look for opportunities for research collaborations.

For Abby Williard’s part, she hopes that people with SCT can get the help they need, rather than putting themselves down as unintelligent, as she did. 

“All throughout my life, I just thought I was stupid and lazy,” she said. She thinks that if SCT were to become an official diagnosis, it would be easier for people to get help managing symptoms. “It’s something that kids and adults alike need support for,” Williard said. “It’s not something that they can just overcome by themselves.” 

Willard is uncertain about her own plans. She’s been fascinated by the human body since she was young, and had intended to start a program to train as a medical assistant in the fall. But after getting a late start on the application process, and struggling with it — which she attributed to her SCT symptoms — Williard said she decided to put it off indefinitely, instead opting to keep her job at a local grocery store. She said she might return to the application in the future, possibly with the support of a counselor or therapist with knowledge of SCT. 

“I do worry that that won’t ever work out,” she said. “But I think it’s really a matter of how much I can personally push myself and just kind of break out of that comfort zone.”

Source: STAT