Can't Just Stop

by Sharon Begley

  Still, the first glimmerings of hoarding often emerge in childhood, around ages eight to ten. Just as adults who hoard often have difficulty with such higher-order cognitive processes as judgment and decision-making, so children who have poor executive function—a catchall term that includes organizing, planning, and paying attention—are more likely to have hoarding tendencies. When you have trouble organizing you can’t easily tell what you need, or what’s extraneous or excessive. You can’t find a book or a pen, so you acquire more.

  Asked in one study when they began to hoard, elderly compulsive hoarders reported an average age of onset of 29.5. When the researchers asked more probing questions, taking the hoarders over the events of their childhood and adolescence, however, they recalled hoarding problems, or at least hoarding tendencies, at these younger ages. They had the same feelings of needing to acquire and keep, or being anxious or heartbroken about discarding, as they did in later life, but as kids they weren’t able to act on them. That fits with other studies that ask hoarders to think back to when they first began to acquire excessive amounts of stuff: the average is about twelve, with 80 percent saying symptoms of hoarding had set in before age eighteen. (A 2010 study bracketed the age of onset as from eleven to fifteen.) The teen years, of course, are when people demand more autonomy over their actions as well as their own space. It is also when they develop financial autonomy through an allowance, after-school jobs, and other sources of spending money. Since hoarding can look a lot like the messiness and sloppiness that seems as inevitable a rite of passage as acne, families and even the teen seldom identify the behavior as hoarding, much less as a sign of a mental disorder.

  Adult hoarders are more likely to have grown up in a hoarding family, researchers at Boston University told the OCD meeting, confirming other studies: 50 percent to 80 percent of hoarders have at least one close relative whom they considered a pack rat if not an outright hoarder. That sounds high, so it’s important to know that, like any behavior with some degree of heritability, it is not inevitably passed down to the next generation. The Johns Hopkins OCD Family Study, which ran from 1996 to 2001 and evaluated just over eight hundred people with OCD, found that only 12 percent of the first-degree relatives of hoarders also hoarded: in a family with eight children of a hoarding father, that works out to just one of the siblings growing up to also be a hoarder.

  Exactly how heritable hoarding is remains an open question. In 2013, British scientists reported that genetic differences play a role in hoarding by males but not females. They had 3,974 identical and fraternal twins, all fifteen years old, fill out a self-report on hoarding. The basic rationale of twin studies is that because identical twins have identical genes, and fraternal twins share only half of their variable genes, comparing how alike the two kinds of twins are should offer clues about the size of the genetic contribution. If identical twins are more alike, that suggests a stronger role for inherited genes. The prevalence of hoarding symptoms in the twins was 2.6 percent of girls and 1.2 percent of boys, the scientists reported in PLOS One. But while more identical boy pairs than fraternal boy pairs were both hoarders (genes accounted for 32 percent of the variance in hoarding), there was no difference in the likelihood of hoarding between the two kinds of girl twins (the genetic input was a paltry 2 percent). In both sexes, the environment played a vastly greater role in the likelihood of hoarding.

  Even if DNA does play a role, you can be sure there is no hoarding gene. The behavior is too complicated for that. More likely the genetic involvement works through numerous genes that shape brain circuitry involved in executive function, perhaps decision-making. The other way hoarding can run in families, of course, is if children model themselves after a hoarding parent or grandparent—not necessarily consciously, but by observing a way of life and concluding that it is perfectly acceptable. What is clear is that once hoarding sets in it is difficult to shake: the Boston University researchers reported that hoarding went away on its own in only one-seventh of teens.

  For many people, being asked about their earliest memory of something brings a long pause, as they try to dredge up a remembrance of things past, but Grace didn’t hesitate. “It’s of playing on the floor with my sister, and these big, black plastic trash bags filled with things, and we’d lie on top of them,” she told me. “I was four or five.” Piled from the floor to about the height of an adult’s hip, the bags held clothing and mail, broken electronics, newspapers and magazines—the stuff of her hoarding parents, whose idea of cleaning their three-bedroom home in Philadelphia was to cram things into those bags. “They were piled into walls so high we couldn’t see over them,” Grace said.

  The front door opened into the living room, beyond which was the kitchen. Getting to any of them required walking carefully along the plastic runners that marked the paths between piles—bags and bags piled nearly to the ceiling, abandoned home improvement projects like shelving and cabinets shoved against walls, sofa and chairs swallowed by mounds of mail and papers and cardboard and plastic containers. “There was a path to everything,” Grace said, “to the basement, which was also filled from floor to ceiling, to the washing machine in the room behind the kitchen, to the couch, to the kitchen,” where the table had vanished years before under a mountain of plastic utensils and paper plates and unidentifiable containers. Gravity often had its way, and Grace and her sister became accustomed to hearing the “crunching and breaking of miscellaneous junk under our feet as we walked through the house.” The family hid when the doorbell rang unexpectedly, and on the rare occasions when someone was expected her parents frantically stuffed mail and clothing into the ubiquitous black plastic bags and hurled them into the basement or the garage, desperately trying to make at least the living room seem merely messy.

  The routines the family adopted to keep the world from knowing how they lived finally failed them one day, when a friend needed a place to wait for her parents to pick her up after a school trip. “My sister and I took the longest walk up the porch steps that day,” Grace remembered. She tried to prevent the inevitable, cheerfully saying what a shame it would be to go inside on such a lovely day, but the friend was tired and wanted to sit down. “You could have picked her jaw up off the floor,” Grace said. “We tried to distract her with a TV program but she could only focus on the mounds of trash around her.”

  Soon after, Grace’s family moved to another house, a fixer-upper in a tough neighborhood (her parents had begun struggling financially). It seemed like a golden opportunity to cull the clutter and toss out much of the stuff. With her parents talking about a “clean slate,” Grace envisioned mounds and mounds of black plastic garbage bags lined up at the curb the way other little girls imagine a trip to Disneyland. But it was not to be. The bags all came, collected in a mad rush on the day they needed to vacate the premises, without so much as being opened. So did drawers filled with trash; her father stuffed them into the moving truck as-is. So did years and years of mail. Grace’s father insisted that everything was useful (or might be one day) and her mother was helpless in the face of decisions about what to keep and what to toss. “They just couldn’t do it,” Grace told me. Their stuff seemed as eternally bound to them as the ancient Mariner’s accursed bird.

  Grace, who graduated with a degree in psychology in 2012, was back home when I spoke to her. Like many millennials, her job (helping children with developmental disabilities) makes living on her own a nonstarter, financially. She and her sister have managed to carve out non-hoarding zones not only in their own bedrooms but also in the living room and kitchen. As soon as even two days of mail threatens to take up residency, they’re brutal about sorting and tossing. They hope to move out eventually, though they have no doubt that once they do their parents will likely meet the same fate as the Collyer brothers.

  Collectors

  Scientists who study hoarders insist there is a vast gulf between people like Grace’s parents, who meet the criteria for a mental disorder, and collectors. For one
thing, collectors categorize their treasures, which belong to a specific, selective, well-defined category: matchbooks, yes; magazines, no; model trains, yes; clothing, no. Collecting is structured, planned, and selective. Hoarders acquire random stuff of all kinds. Collectors proudly display their trophies, be they baby spoons, orchids, unopened action figures, Morgan silver dollars, Broadway memorabilia, presidential campaign buttons, first editions, antique golf clubs, fifteenth-century maps, perfume bottles, Barbies, Hot Wheels cars, Madame Alexander dolls, vintage hats, telescopes, geodes, or fossil trilobites. Hoarders toss their possessions anywhere, often forgetting what’s in the growing piles. Items in a collection are usually retired from normal use; a swizzle-stick collector would no more dunk one in an Old Fashioned than the Metropolitan Museum of Art would use its Chippendale chairs for a casual lunch. If hoarders don’t use their stuff, it’s because it’s useless or unfindable. And collectors do not have the distress and impairment that many hoarders do.

  Yet, like so many behaviors, collecting and hoarding have so much in common, especially the emotions motivating them, that drawing a sharp line between “charmingly eccentric” and “mental disorder” is a challenge. “Certain features are the same in hoarding and collecting,” Randy Frost told me. “In both, there are attachments to possessions, which is something all of us have.”

  What drives collectors? For some, it’s a desire to make sense of “the mess of the world,” as well as to focus intensely on one small corner of that mess and know it in minute detail, wrote Michael Shanks, a professor of classical archaeology at Stanford University who explored collecting in his 2012 book The Archaeological Imagination. For others, it’s a way of demarcating the self, of saying, Here, this is part of who I am. The person who has a collection of baseball cards or action figures, rocks or dolls or snow globes or (in two unusual cases Shanks discussed) items related to hands (gloves and glove-makers’ forms, doll arms and ship prows and sculptures) or to the Wizard of Oz (books, costumes, and memorabilia)—such a person has imposed order on the world and planted a flag in a tiny part of it, defining himself in a unique way.

  Collectors define themselves by their trove just as others use the iPhone they carry, the Galaxy tablet they use, the Restoration Hardware furniture they sit on to define themselves. Jon Cruz, who participated in the 2014 Collector’s Night at the Brooklyn Historical Society, does that by amassing presidential campaign memorabilia, centered on the hundreds of pins from every candidate (primaries and general elections) since 1894 and including flourishes like an 1880 bandanna adorned with the likenesses of James Garfield and Chester Arthur. A teacher of government at a Bronx high school, Cruz told a reporter that he had been drawn to politics since he was eight, in 1984, and was “trying to talk to adults about NAFTA.”

  Collectors actively and even ostentatiously display the material objects that express their identity, values, taste, erudition, or other quality they take pride in. Kyle Supley, who also took his collection to the Brooklyn show, was so smitten with the clocks shown in the opening credits of the 1985 classic Back to the Future that at age eight he began methodically amassing every last one of them and is now up to two hundred—cuckoo clocks and Walt Disney clocks, cat clocks and Art Deco clocks and more. (Catch his YouTube video “Kyle at Age 12: Clock Collector.”) “I think collectors are a little on the edge of being hoarders,” he told the New York Times. “Given the chance, we would fill homes. So it has to be tastefully displayed.” True hoarders, however, virtually never invite anyone to see their stuff, let alone display it, doing everything they can to keep the world out. How “everything”? When Will, a family friend, tried to enter the home where he grew up in suburban New York, where his sister still lived and hoarded, she wouldn’t open the door; when he climbed in a ground-floor window she called the cops.

  To help psychiatrists correctly classify hoarding for the DSM-5, scientists ran field tests to assess whether various diagnostic criteria accurately identified people with the disorder but did not mistakenly diagnose those without it. “You don’t want to label as hoarding something that’s a pleasurable activity like collecting,” Columbia University psychiatrist Carolyn Rodriguez said when I visited her at the school’s massive building atop Washington Heights in northern Manhattan one summer morning. “In England, something like 20 percent of people are collectors.”

  The participants in the field test included twenty-nine self-identified hoarders and twenty people who called themselves collectors (of, among other things, comics, coins, stamps, glass elephants, vintage wireless radios, toy soldiers, and model submarines). Questionnaires asked participants whether they had difficulty discarding things and how much clutter they lived with, including whether the clutter was sufficient to totally impede the use of key living spaces; whether the clutter or the idea of discarding caused “distress and impairment” (a near-universal criterion for diagnosing a mental illness, according to a key tenet of American and British psychiatry); whether these symptoms caused them “to avoid doing anything, going anyplace, or being with anyone.”

  None of the twenty collectors qualified as hoarders, researchers at the Institute of Psychiatry in London reported in 2012 in the journal Comprehensive Psychiatry, even though 90 percent admitted to difficulties discarding and 85 percent to distress at the idea of discarding. The only reasons they didn’t qualify as hoarders is that their collections did not cause clutter or problems such as blocking access to some areas of the home, and certainly did not cause distress. A wonderful collection brings pride and joy. Hoarders, in contrast, say their stuff causes practical difficulties and, often, distress.

  * * *

  As with every compulsion, the line between pathology and eccentricity is far from clear. Hoarding experts insist that pathological hoarding is easily distinguished from collecting, primarily by the presence in the former of “distress and dysfunction,” such as keeping hoarders from using the rooms and furniture in their homes normally. Without those, there is no mental illness. And Frost argues that “the nature of the attachment to their things is different in collectors and hoarders. People who hoard get extreme, rigid, inflexible attachments to things, and lots of them.”

  Frost, working with Steketee and clinical psychologist David Tolin, systematized the distress and dysfunction criteria by developing a questionnaire to diagnose hoarding disorder. They were guided by the basic definition of hoarding as acquiring and failing to discard a large number of possessions that have little to no use or value (to an objective observer) with the result that living spaces are too cluttered to be used as intended and resulting in clinically significant distress or impairment (a.k.a. dysfunction) in social, academic, or occupational functioning. Each item is to be answered from zero (no difficulty or not at all) to eight (extremely difficult, or extreme difficulty), with numbers in between indicating mild, moderate, or severe:

  1. Because of the clutter or number of possessions, how difficult is it for you to use the rooms in your home?

  2. To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary things that other people would get rid of?

  3. To what extent do you currently have a problem with collecting free things or buying more things than you need or can use or can afford?

  4. To what extent do you experience emotional distress because of clutter, difficulty discarding, or problems with buying or acquiring things?

  5. To what extent do you experience impairment in your life (daily routine, job/school, social activities, family activities, financial difficulties) because of clutter, difficulty discarding, or problems with buying or acquiring things?

  The “distress and dysfunction” criteria in questions 4 and 5 present an obvious problem, one that has stirred controversy in other areas of psychiatry: namely, two people might have identical behaviors and symptoms of mental illness, but if those behaviors and feelings bother only one of them then he, and not the other (no distress or dysfunction), is mentally ill. Fo
r instance, someone could be just as depressed as another person, but if she finds this a perfectly acceptable way to feel and live (“if you’re not depressed you don’t understand what’s going on in the world”) then she isn’t mentally ill. With hoarding, there’s a risk of classifying one person as mentally ill but another, who accumulates just as much stuff and is just as attached to it, as not, because the second person has multiple houses to absorb her belongings and therefore suffers no dysfunction. Only in psychiatry do you find such situational definitions; high blood pressure is high blood pressure no matter whether it bothers you or not. Underlining the confusion within psychiatry, a leading expert on hoarding, writing in the New England Journal of Medicine in 2014, claimed that hoarders “may not necessarily report distress.”

  The “distress” criterion raises another problem. Is it possible that engaging in something that is both socially sanctioned and extremely common, such as collecting, does not cause distress precisely because of those attributes, whereas a behavior that psychiatrists deem a mental disorder and that society ridicules (see: Hoarding: Buried Alive) is practically bound to do so? Few hoarders who wind up seen by elder service caseworkers agree they’re behaving irrationally, let alone that they have a mental disorder. “Most hoarders will tell you they never thought of it as a disease,” Sanjaya Saxena told me—until family members or authorities told them it was and that they couldn’t live that way. That caused distress, and presto: a behavior that had fallen short of a key criterion for mental illness now met enough criteria for an official diagnosis.