By the time my case worked its way through the health service to reach the specialist OCD unit, my obsessions about HIV had spread to the many different ways I thought I could pass the virus to my baby daughter, who by then was about eight months old. If I cut myself shaving, or in clumsy attempts at home improvement, I was compelled to wash my hands repeatedly before I touched her, in my mind to remove any risk that I could pass her contaminated blood. I was distraught. I had become a hand washer. My fingers were always chapped and dry. I told people it was because I had to clean and sterilize her milk bottles so often.
One night I showed her my electric toothbrush and woke with a start the next morning to intrusive thoughts that I had flicked my blood from its bristles into her eyes. I was compelled to check if I could have done. I locked myself in the bathroom, drew a face on the mirror with shaving foam and held the buzzing wet toothbrush at various distances to analyse where the water sprayed. It didn’t help.
It wasn’t just HIV by then. When I discovered that some of the old paint I had enthusiastically stripped and burned from the cupboard doors in our bedroom contained lead, I became convinced I had poisoned her. No matter how many times I cleaned the carpet, if I dropped one of her toys or her milk bottle I considered it contaminated. More blood tests – this time my wife and I for lead (both normal). My wife drew the line at tests on the baby, as my OCD wanted, because that required a needle to be stabbed into her young head. I even found a national lead paint hotline to call. On my third enquiry to them inside twenty-four hours, afraid they would recognize my voice and refer me to the answers they had offered previously, I convinced my wife to ask my questions for me.
I was concerned not just that I would pass HIV to my daughter, but also that I would act in a way that would make her more likely to develop obsessions and compulsions herself. On that score, I was right to worry. Studies since the 1930s have shown that OCD seems to run in families. Relatives of those with OCD are themselves more likely to show symptoms than the general population. So, here’s another question, is OCD genetic? Do I carry it in my DNA?
* * *
There is no single obsession gene, just as there is no gay gene, or intelligence gene. To start with, there just aren’t enough genes to go around, to map one-to-one onto the entire spectrum of human attitudes, behaviours and physical attributes. All genes work alongside other genes. A few of our traits (wet or dry earwax) and a few diseases (cystic fibrosis) have been traced to the impact of a solitary gene, but they really are a few. Even eye colour, for years a classic textbook example of single gene control, is now known to be under the control of many different genes that act together.
This helps to explain why, despite recent technological progress, most of the promised medical reward of human genetics remains on hold. The more scientists explore, the more murky and complicated the picture becomes. That means that when it comes to the genetic causes of OCD, unfortunately we don’t have much to go on. There are some clues, but they are pretty abstract clues. One of these came in summer 2012, when scientists in the US looked at the genes of five generations of an obsessive family.
OCD was rife in the family. Great-great-grandpa and great-great-grandma had two children, both of whom had OCD. Four of their eight grandchildren had OCD too and so did eleven of their eighteen great-grandchildren. Of the eleven great-great-grandchildren born by the time of the study, five were judged to have OCD. None of the family had married anyone with OCD, so if there was a genetic link, and there surely was, then scientists could have expected this family, and others in the same study, to reveal it.
Detective work followed. With little more than a processed blood sample, lab researchers can automatically screen a person’s DNA for more than half a million specific and common genetic variations. Nobody has every one of the half million possible variants – such a person would be very ill and very odd indeed. Instead, they are sprinkled across the population, and the different ways they appear in individuals act as flags, which draw attention to regions that might carry genetic risks. When scientists compare these genotype maps, and the symptoms in the people where the maps look similar, they can start to narrow the focus for a genetic cause for illness, down from the entire genome to a few flagged regions. That’s an essential step if targets for treatment are ever to emerge.
In the US family study, when the scientists looked for patterns shared across the generations, the strongest linked OCD to specific genetic changes at the tip of chromosome 1. It was far from a smoking gun though. The association with OCD wasn’t clear-cut, and other regions of other chromosomes were implicated too, just with even less certainty.
A parallel study that looked for patterns in the genotypes of 1,465 unrelated people with OCD from across the world produced equally weak results. In that research, a technique called a genome-wide association study, the scientists fingered a different genetic region, this time on chromosome 20. Genome-wide association studies often produce graphs of results named Manhattan plots after the famous pointy skyline of New York City. Each prominent skyscraper on the plot corresponds to a possible genetic cause, and so a possible step towards a treatment. In this case, the output of the OCD study looked more like the skyline of Washington, DC, which is universally flat because planners allow no building much taller than the distance across the street it stands on.
No skyscrapers in the OCD Manhattan plot indicates no clear genetic causes. That doesn’t rule out that OCD is under the control of genes, but it shows the relationship is complex and not driven by a few bits of wonky inherited DNA that can easily be identified.
* * *
Mental disorders that run in families do not need a genetic cause. There is the impact of the environment too. Some genes lie dormant until something in the environment triggers them. Other inherited traits are down to the behaviour and influence of our parents. I play golf and so does my brother. That’s because my parents both play golf and they encouraged us, not because golf is in the shared DNA of our family. It’s especially not in the shared DNA of my dad. You only have to watch him try to chip his ball over a bunker to see that.*
The usual way to tease apart genetic and environmental factors, to separate nature from nurture, is to study twins. Identical twins share all their genes, non-identical twins don’t. Twins raised together share aspects of their environment, those raised apart don’t. Throw enough of these different twins at a hereditary illness and scientists can start to work out whether their nature or nurture has the most influence. OCD has been studied in twins for decades but the results are hard to interpret. The best guess of scientists when it comes to OCD is that genes and environment are about as important as each other. So, just as someone with OCD cannot blame the nature they received from their parents, they can’t blame the nurture they received from them either. Or, if they wish, they could blame both. (What matters most is that the parents do not blame themselves.)
One way that our environment − parents, preschool years and cultural background – could seed obsessions is because these early experiences frequently leave us with dysfunctional beliefs, some of which, as we saw in Chapter Seven, are implicated in OCD. Inflated responsibility could come, for example, when parents give older children too much power over their younger siblings at an early age, or conversely as compensation for giving them no power at all. In problem-solving tests, mothers of those with OCD have been seen to demand more of their children, to expect them to take the lead.
The famous OCD of aviation pioneer-turned-bearded-recluse Howard Hughes may have emerged from his childhood experiences. Hughes died in 1976 and was a fierce defender of his privacy, but details of his bizarre behaviour in later years were pieced together by psychologist Raymond Fowler, a former president of the American Psychological Association who was asked to conduct a ‘psychological autopsy’ by the law firm that handled the billionaire’s estate.
Hughes showed clear symptoms of OCD, which, according to Fowler, may have related to his mother’s fear of polio and the extreme measures she took to protect her young son from the disease. By the time he was in his sixties, Hughes had developed severe compulsive behaviour to ward off germs. His staff had to wear white gloves, pass him cutlery wrapped in paper, and he would burn the clothes he was wearing if someone he met became ill. He gave detailed instructions on how others should feed him tinned peaches – remove the label, scrub the can and pour the contents into a bowl without touching it. He wore tissue boxes on his feet.
It is hard to pin down how parenting style contributes to OCD because to draw definitive conclusions, adults with OCD must be asked to recall how their parents behaved some twenty or thirty years or more before. A handful of studies have looked at the impact of parenting style on the mental health of children in real time, but only for the broader problem of anxiety. (High parental control and overprotection did seem to make children more anxious, but it is impossible to tease out the impact on OCD from this research.) The only known study to compare the behaviour of parents of children with OCD, and parents of children with other anxiety disorders, suggested the mothers and fathers of the OCD kids showed less confidence in their children and were less likely to reward independence. The study, however, was small (just eighteen children with OCD) and it does not prove that the parenting style was to blame.
As a parent concerned I will pass OCD on to my children, none of that is very helpful, but that’s the way it is. Most parents make it up as they go along anyway. It’s hard to stick to a script, even if we knew what it should say.
* * *
There is clearer evidence on the damaging impact of what’s called family accommodation of someone’s OCD – parents and siblings drawn into the obsessive web of a loved one and forced to help perform their ridiculous compulsions. Mrs D, for instance, was obsessed with contamination from other people and would sit only on a single chair that she would disinfect each morning and which nobody else was allowed to touch. Mrs D’s compulsions demanded that her three children stay two or three feet away from her. The children had no choice but to comply – their mother made the rules.
In their 1980 book Obsessions and Compulsions, Stanley Rachman and Ray Hodgson described an extreme case of accommodation of the contamination rituals of a 19-year-old man called George by his elderly father Harry. Each morning, Harry said, he would help his son dress while taking care not to touch the outside of his clothes. A trip to the toilet was next and, Harry said, it was a palaver. It was easier if George wanted only to urinate, Harry said, because his role then was then only to get down on his hands and knees with a flashlight to check his son’s trousers and boots for splashes, or the floor for pubic hairs. As soon as George did up his trousers, Harry would have to wipe the zip with a pad soaked in antiseptic.
Life was better outside the house, if they could get there. If George saw a speck of brown in the car he said it was dog dirt and Harry had to scrub the seats. About to go out one day, George felt suddenly compelled to have a bath and delayed their departure by three hours. If George felt Harry had not cleaned properly he would get angry and smash crockery and furniture; he once threw a bar of soap through a window pane and then started to worry about the broken glass, which he insisted that Harry clear away.
Harry was in an impossible situation. And it’s one faced time and again by the families of people with OCD. Surveys show that three-quarters of the relatives of people under the age of 17 with OCD become involved in the rituals. More than half the relatives of adult sufferers do too. Some do it because it pains them to see the person they love in such distress; distress which seems easy to lift, at least temporarily. Others indulge the compulsions for the sake of an easier life. It is much simpler, for example, for a family member to agree to leave the house last, than it is to wait for a compulsive checker to do so only after they thoroughly check all doors and windows are closed. And, like Harry, some relatives agree to participate in the rituals because it seems to make the situation worse if they don’t. People with OCD can get angry and accuse others of not caring for them if their families do not obey their rules or offer the requested reassurance.
Sometimes the anger is well directed. Children and siblings of people with OCD have been known to exploit the disorder’s fear and anxiety as bargaining chips – ‘If you don’t let me use the car/borrow your jumper/go to the party then I’ll walk in my dirty shoes all over your bed.’ Together with the insults and mockery that some families hand out to relatives with OCD, psychologists describe such responses as hostile non-compliance. Not surprisingly, hostile non-compliance doesn’t help. In fact, criticism can make sufferers more likely to carry out their rituals.
However, compliance – hostile or otherwise − does not help either. Family accommodation of OCD is linked to more severe symptoms and worse functional impairment. And it interferes with some types of treatment, especially behavioural techniques. Families who want to help someone with OCD must aim for the middle ground: nonhostile noncompliance, or noncritical support with no accommodation of rituals. That’s easier said than done.
Just as someone with OCD does not respond to reason or appeals to their rational side – ‘look, there is no HIV on the towel, just use it’ – so it’s not as simple as telling a distressed and loving dad such as Harry merely not to wipe his adult son’s zip with antiseptic each time he uses the toilet. It seems vital that, when people with OCD seek and receive treatment, those who live with them are made to know and understand what’s involved and what’s at stake.
* * *
When it comes to the possible causes of OCD, the legacy of biology and history – DNA, early experiences and evolution − is only half the story. Biologists talk about short-range and long-range causes of behaviour. (They call them proximate and ultimate.) It’s a distinction neatly demonstrated by the tale of the monkey, the snake and the flower, which sounds as if it should be a children’s parable or a puzzle about how to get them across a river, but actually describes a series of famous experiments carried out in Wisconsin in the late 1980s. In the studies, psychologists found that hand-reared rhesus monkeys had no instinctive fear of snakes. Why should they have – the animals had never seen one. Pictures of snakes and toy snakes placed next to them had no effect.
That changed after the animals were shown video of the way wild monkeys react to a snake: with lip-smacking fear and restless anxiety. After they saw these images, the lab-reared monkeys quickly developed the same response. Shown the same pictures and toys as before, from then on they would react just as the wild monkeys did. They had learned fear.
When the psychologists tried to use the same mechanism to make the lab monkeys afraid of flowers, they failed. No matter how many times the lab animals watched footage edited to show wild monkeys react with panic to a flower, just as they had to the snakes, the hand-reared animals wouldn’t buy it. The difference was down to evolution, the ultimate cause of the monkeys’ behaviour. Millions of ancestors who ran away from millions of snakes over millions of years have left their mark on the biology of today’s rhesus monkeys in a way that nonthreatening flowers simply haven’t.
The ultimate causes of OCD could indeed be genetic, or evolutionary, or found in the circumstances of our family home, but this cannot fully explain why some people develop OCD and some don’t. And it cannot explain why people who develop OCD do so just when they do. What are the proximate causes of obsessive and compulsive behaviour? What events in our individual lives trigger the dormant OCD threat? One thing is clear: that someone has not developed OCD so far does not mean they will not succumb to it in future.
* * *
An American man called Mr Rossi developed an obsessional need to remember people’s names. He would write them constantly – those of friends, family, famous baseball players and colleagues from work. It was they who convinced Mr Rossi to seek help, because they were sick of him calling up day and night to check he had them right. He was 87. His obsessions and compulsions did not begin until he was 75. He waited for them almost his whole life.
Obsessive-compulsive disorder strikes most people by early adulthood; fewer than 15 per cent of cases develop in people over 35. So Mr Rossi was unusual, but far from unique. Where did his OCD come from? Did it lie undisturbed for more than seven decades before something brought it to the surface? Or did something change in later life that unsettled him? As we’ve seen, scientists seem to have solid cognitive explanations of how people develop OCD, but what about why and when they do? Are obsessions a ticking time bomb? You probably have intrusive thoughts, so will you go on to develop OCD? If so, are there danger signs that can be spotted and acted upon? There might be, and a likely one is trauma.
Howard shows the impact of trauma vividly. Howard was 5 years old when he developed OCD. A naturally shy and anxious child, he was intelligent and started to crawl and walk earlier than many of his peers. His OCD started a few days after he witnessed a horrific road traffic accident; a pedestrian was hit by a car and left unconscious and covered in blood. Howard was convinced the pedestrian was dead, and it took him until the next day to stop shaking.
After the accident, Howard started to wash his hands until they cracked and bled. Sometimes he would spend most of the night at the sink. He was not afraid of germs. That was not why he washed. He did it, he said, because it was the only way he could find to make the funny feeling go away. Even that was not enough. He still had to pester his parents and his teachers about whether his hands were really clean. Howard said he wanted to stop his mind making him wash his hands. That is pretty bright for a 5-year-old.
Just like Howard, more than half the people with clinical obsessions and compulsions can point to an earlier stressful incident they identify as the trigger for their condition. This trauma does not have to come from horrific and bloodstained events like Howard’s. More subtle psychological shocks can lead to OCD as well. Betrayal is one − to be hurt and let down by those you trusted. The mental shock of betrayal can cause mental contamination and it can bring compulsive washing. Treat someone like dirt and they feel dirty.
Bullying has been shown to bring on OCD. Max, a 14-year-old boy from Florida, was victimized at school over his physical appearance and sexual orientation. Max started to shower after he was picked on, to cleanse himself of the insults, then he would avoid wearing clothes he had worn when previously bullied, because he considered them contaminated. He went further; whenever he thought of the bullies, Max would have to clear his throat and restart whatever he was doing. Because he had the thoughts all through the day, this compulsion seriously affected Max’s life. He started to associate other places and activities with the bullying, and by the time he was seen by a psychiatrist, he had gone more than a month without a shower, a change of clothes or a night in his own bed.
Direct physical trauma has been linked to the onset of OCD. Mr A recovered from a month-long coma after he fractured his skull in a motorbike crash. Six months later he was back in hospital in Massachusetts, with severe intrusive thoughts of Aids and cancer and obsessions with negative news stories that began the moment he regained consciousness. And two unfortunate people in Istanbul woke from surgery to cure their epilepsy only to find the treatment left them with OCD. They showed some mild obsessive traits before, but afterwards they had to memorize numbers and count objects, or check and clean compulsively. The surgeons who performed the operations were forced to conclude that the patients’ quality of life had been better before they tried to help them.
The anxiety of a botched surgical procedure can trigger obsessions as well – at least according to the British legal system. In September 2009, the Dudley Group of Hospitals NHS Foundation Trust agreed to pay £25,000 compensation to a teenager who said his OCD was down to traumatic delays in treatment for appendicitis when he was 8 years old.
* * *
If about half the people with OCD can pinpoint a specific trigger event, a trauma that led to obsessions and compulsions, then that still leaves lots of sufferers who cannot. Their OCD appears to come out of the blue. When it does, often it disturbs the innocence of childhood.
Rituals are normal for children. By the time they reach 30 months old most toddlers show some ritualistic and repetitive behaviour; they might line up their toy trains in the same way or pretend to prepare an identical daily meal. Baths and bedtime become a string of familiar routines and any deviation from the expected patterns leads to anxiety and tantrums. The rigid nature of these domestic routines tends to fade by age 4 to 6, but a new set of rituals emerges, commonly seen in play dictated by complex rules. Hopscotch, to someone who has never played it, probably looks like compulsive behaviour. A set number of moves that a child must perform in a specific fashion – four steps forward, touch, turn around twice – and all without a foot on the lines.
Rules of play become more elaborate as a child grows to the age of 10 or 11, and fears of contamination and routines to avoid contagion start to appear, for example in games of tag, or in the way that gangs of girls or boys chase each other to deliver kisses, while the other group reacts by shouting and running away. There are parallels to hoarding behaviour too. Most 7-year-olds collect objects, from action figures to sports cards. Indeed, the children’s toy industry exploits this with multiple collectibles connected by a popular theme. Can you collect them all?
Childhood and adolescence are a haven for ritual, but most young people leave them behind and do not progress to obsessions and compulsions. Yet some take them too far and do develop OCD, often while they are still children. So at what point does this normal behaviour become a problem? Some child psychologists think the transition at age 4 to 6 is particularly important. It’s a time when the frontal lobes of the brain mature, and mental ability increases.
In 2007, psychologists in the US published the results of a study that tried to test the impact of this cognitive transition point on childhood rituals. They gave 42 children (with their own and their parents’ consent) neuropsychological tests to assess two different mental abilities. The first was to get the children to learn and respond to a rule – to sort coloured cards into piles, for instance. The rule was then changed and the children had to adapt to the new regime. The second test measured how well they could stop doing something on demand. They would be asked to match shapes in a certain way, say, and then to resist doing it.
The psychologists gave the children a toy or a five-dollar gift voucher for the local ice cream shop as a thank you, and asked the parents to fill in a series of questionnaires about their child’s routines, habits, fears and perfectionism.
When the scientists looked at the results they found a difference between the performances of the younger and older children. For the kids aged 5 and under, the poorer their performance in the tests, the more likely their parents said they were to carry out rituals. For those older than 6 years, a new factor emerged: the older children most likely to show compulsive behaviour were those who, according to the parents’ questionnaires again, showed the most fear.
The psychologists interpreted the results like this: rituals and compulsive behaviour in children help them to regulate emotion. Young children, with immature and incomplete mental ability, must rely more on the comfort of familiar ritual to ease the fear and anxiety they feel because they do not yet have full control over their behaviour. Older children can regulate their behaviour better, but they have more complex fears than younger children – of animals and strangers, as well as social fear such as self-consciousness and a need to fit in. As they grow, some older children continue to respond to these new fears as they did when they were younger: with ritual, as a way to ease the anxiety they cause.
We must file the results of this study as unproven. It’s pertinent, but the sample is small and the conclusion is pretty speculative. The psychologists themselves point out one of the study’s biggest flaws – their analysis of brain development and activity is based on the indirect evidence of test scores.
Still, if we take the findings at face value, there are some eerie parallels to OCD. The younger children could not turn off inappropriate behavioural responses, and tried to quell the anxiety this caused them with ritual. The older children responded to (rational) external fear with an irrational response (rituals such as counting and touching that decreased anxiety only in the short term). The kids in this study were all normal; none had been diagnosed with OCD. But the underlying features of their rituals and their mental condition seem the same.
It’s worth noting also that the children who scored the highest on the perfectionism scale showed the most social fear, and so were more likely to carry out ritual. This suggests that increased self-awareness and hypersensitivity are important. We have already seen how sensory hypersensitivity is linked to OCD through excessive disgust, which can be viewed as overreaction to taste, smell and touch.
In 2012, a study in Israel linked the rituals of 4- to 6-year-olds to oversensitivity to everyday tactile and oral stimuli. The children who (according to their parents, again) were more likely to avoid messy play with sand and glue, complain when they had their hair and nails cut, or try to avoid having to brush their teeth were also the most likely to show repetitive behaviour. A further Internet survey of more than three hundred adults showed the most obsessive-compulsive symptoms were reported by those who, for example, didn’t like to go barefoot on sand or grass, or who did not like to be touched – and who recalled they felt the same when they were children.
Again, let’s not read too much into a single study, but here’s what the Israeli team thought might be responsible: The brain takes the different inputs from the senses and combines them to form a picture of the outside world, a cognitive process known as sensory integration. This is a complicated procedure and some brains do it better than others. Those brains that do it worst can produce development and behavioural problems, especially in young children. Kids with these sensory dysfunction problems usually show exaggerated or inappropriate responses to normal sensations – they might refuse to wear certain clothes or to eat some textures of food. Sensory dysfunction causes a child distress and upset. So these children look for ways to calm themselves down, to create order and predictability. In doing so, they turn to excessive rituals. As kids with sensory dysfunction develop, their rituals do too; some become OCD.
If you’re a parent and your 5-year-old won’t eat baked beans or wear socks, then please don’t panic. To reiterate, these are preliminary findings and it’s still far from clear what separates the rituals and patterns of happy and normal development from the foreshadowings of OCD. Unfortunately, it’s just difficult for anyone, parents included, to spot the difference. Officially, an adapted version of the Yale-Brown diagnostic test is used to find OCD in children. Unofficially, there are checklists of danger signs out there, but the highlighted behaviours are broad and most parents will recognize at least one – a child who spends more time than usual in their bedroom for instance, or one who insists their food is presented to them in the correct way. The core symptom to watch for is probably distress. Not the instantaneous tantrum that flares up when you interfere with one of their rituals, but premeditated and lingering unhappiness. And most parents can spot that in their kids, even if we do try to hide it from them.
* * *
When I turned up for my first assessment at the hospital’s mental health unit and walked across the car park, I could see the windows of the maternity ward. The door of the psychiatry unit had no handle on the inside. The staff there declared my OCD severe enough – just – for their assistance. They told me to report back for group therapy the next month. There were no guarantees, they said, but they thought they could help.