In January, Sarah Maraniss Vander Schaaff wrote an extraordinary piece for The Washington Post about her struggle with obsessive-compulsive disorder and generalized anxiety disorder. Below she writes a new piece — for OCD Awareness Week — about how OCD affected the life of one young man and his struggles to get through school, which is highly revealing about what many young people with OCD — and those who love them — face.
OCD, like other anxiety disorders that plague children of all ages, is often unrecognized by parents and educators. According to the Anxiety and Depression Association of America, OCD manifests in different ways, but this is a broad description:
“In general, those who have OCD suffer from unwanted and intrusive thoughts that they can’t seem to get out of their heads (obsessions), often compelling them to repeatedly perform ritualistic behaviors and routines (compulsions) to try and ease their anxiety…. Unlike adults, children and teens with OCD may not realize that their obsessions and compulsions are excessive or even view their symptoms as a disorder that can be treated.”
It is estimated that 1 percent of the adult population has OCD, but because it is so often undiagnosed and misdiagnosed, the prevalence could be higher. In children, it is estimated that one in 200 have it — and about 20 teens in a medium-to-large high school. When does it appear? It can at any age, but often first manifests itself between ages 8 and 12 and between the late teen years and early adulthood.
Students who have OCD are often misunderstood — and not only can suffer academically but also can live in torment. The website says:
“Students with OCD may appear to be daydreaming, distracted, disinterested, or even lazy. They may seem unfocused and unable to concentrate. But they are really very busy focusing on their nagging urges or confusing, stressful, and sometimes terrifying OCD thoughts and images. They may also be focused on completing rituals, either overtly or covertly, to relieve their distress.
While frustrating to educators, OCD may be torture for the students who have it. This disorder may be difficult to identify because its observable symptoms are similar to other conditions and mental disorders, and mental rituals cannot be observed. Symptoms in children and adolescents can change over time, and they tend to wax and wane for no apparent reason. School personnel who have a good understanding of the variety of behaviors that may signal OCD are better equipped to initiate a plan to assist the student.”
By Sarah Maraniss Vander Schaaff
I wrote about my own experience with OCD in a story for The Post that appeared in January. I spent the first four decades of my life under the tyranny of OCD in what I call acceptance/denial of mental illness. We must help our children. And the good news is, we can.
OCD is not a witty hashtag. And it’s not a cute way to describe the desire to have things just a certain way. It’s a private hell of obsession and compulsion that invades an individual’s mind and life and puts up a fight, overpowering every ounce of reason, willpower and love that comes its way.
It starts early in life and it gets worse. It goes undiagnosed even by experts. And not all experts in mental health are good at treating OCD.
But since the 1980s, when I was a little girl who carried watches and travel alarms in her backpack because of an obsessive worry that the school bus would never come, Cognitive Behavior Therapy (CBT) has proven to be a powerful treatment that works. When introduced in childhood, it can change the course of a life.
This week (Oct. 9-15) is OCD Awareness Week. Let’s move past the jokes about hand-washing and binge-watching episodes of the television show “Monk” and look at what OCD does to a young mind when it grows unchecked.
Ethan Smith’s obsessions began with a concern that his parents would die. By kindergarten, he feared he might die from swallowing a fly, so he covered his nose and ears and held his breath whenever he entered school. Then came a fear of throwing up. At night, he spent six or seven hours performing rituals to counter the intrusive worries.
He never talked about the rituals. “They seemed normal to me,” he said.
By the middle of third grade, he developed a fear of swallowing. He restricted his diet to chicken broth and a particular type of mashed potatoes. By fourth grade, he stocked up on cough drops and tissues when his mom went to the grocery store, and he kept them on his desk at school in case he got sick. It was then he started seeing a psychiatrist.
“Even in the beginning, I felt like they were very malleable,” he said. By acting smart and intelligent, he played them for decades. And he shaped his world, his parents, and even his academic settings to accommodate his anxieties.
When he was afraid a bee would sting him in school, he figured out ways to avoid school. He made the thermometer reach feverish temperatures by gargling with hot water. He put blush on his face to look flushed. He scratched his stomach until it bled and told his mom he’d fallen down the steps. If he had to go to school, he’d wander the halls to avoid class, not because he didn’t want to learn, but because sitting still made him an easy target. That produced anxiety, and that made him want to avoid sitting still.
In high school, Ethan had his first panic attack. It snuck up on him in math class, making him dizzy. His chest constricted. He ran to his teacher and pleaded, “I am dying. Help me, I am dying.”
After that, he thought he had a brain tumor. He did not; he was diagnosed with OCD and put on Prozac.
But his anxiety continued and centered on the concern that if he developed a fever, something bad would happen and he would die. He took his temperature several times a day — in the bathrooms, hiding in corners, anywhere that he could, he said. Each reading of the thermometer meant something different, and he developed rules for how they would determine his day.
His panic continued, as well. “Eventually it was to the point I couldn’t walk into school without thinking I would pass out,” he said.
By sophomore year, he dropped out of school and enrolled in an open-campus alternative, one that accommodated his OCD “100 percent,” he said. It suited him because he could walk out of the classroom whenever he wanted.
By junior year, Ethan had been accepted into a private school with an excellent performing arts program where he flourished theatrically but had no friends. And he still brought his thermometer and called his mom several times a day.
It’s important to remember that during all of this, he was being seen by psychiatrists and treated with antidepressants. Also, some of his obsessive worries were seemingly validated by some sort of physical illness. When he was afraid of choking and not eating solid food, a doctor discovered his tonsils were swollen and removed them. But as anyone with OCD can tell you, after one concern is allayed, the next worry will immediately follow.
Ethan made it to college and lasted two months before dizzy spells and fear of a brain tumor rendered him unable to leave his dorm room. His mom made a bargain: She’d stay in a hotel near campus if he finished the semester. He did. But after heading home for break, he never returned.
What followed was a decade of severe OCD.
“Happiness was not part of the equation,” he said. “If I’m functioning then life is good. It didn’t matter if I was calling my mom 60 times a day or taking my temperature. If I was working then I was ‘healthy and wasn’t sick’ and I just accepted all the other stuff.”
But it took all of his energy to persevere through the symptoms, and he developed patterns of falling off the radar. He explained his absences by making up whatever physical illness he could, even killing off his grandparents more than a few times by altering the date on an obituary.
“I couldn’t say something was wrong with me mentally,” he said.
It can be difficult for those living with OCD and their families to separate the mental illness from life’s honest setbacks and dangers, or to see it as anything other than an individual’s particular personality.
Ethan finally hit rock bottom, bedridden and with his wrists tied beneath him, fearing he would harm himself by poisoning his own food or water, or hitting his head, an obsessive concern that he wanted to compulsively check with CT scans at the hospital.
And so goes the particular type of nightmare of an intelligent, creative and highly capable person with OCD. It can be an unrelenting battle with worries and one’s own mind.
Ethan eventually went to the Obsessive Compulsive Disorder Institute at McLean hospital outside Boston, the first residential treatment program in the country for the disorder.
He got kicked out. He was too deregulated, unable to adjust and overcome by the separation from his family. But a therapist from the outpatient clinic he had gone to in Florida, where he had some initial success with CBT, reached out. He could stay. Two months later, he got kicked out for good.
Ethan was so driven to check the health of his head with a CT scan that he inflicted an injury by cutting his head with a sharp rock. Then, he found a side street and jumped into a snow bank and pretended to be unconscious. The terms of his health contract — a behavior agreement created by his clinicians and signed by his family and himself — said he could not go to a hospital. But nothing said that he could not be taken to the hospital by well-meaning EMS.
But his team of therapists and his family knew his tactics. “It was the first time I was backed into a corner I couldn’t get out of,” he said.
Then, through what he described as tough love and outpatient therapy, he slowly got better. His improvement came when he accepted CBT and Exposure Response Prevention (ERP). He was taught to develop a new relationship with his thoughts. He learned to live with the uncertainties of life and not push away anxiety with obsessive-compulsive thoughts and actions. As he exposed himself to his fears, he learned to habituate to them. It wasn’t easy. He’d spent 32 years ingraining the pathways of OCD.
Today, Ethan lives and works successfully in Los Angeles. And he’s part of a nationwide effort by the International OCD Foundation to help people become more accurately informed about the condition through their October Road Trip to Recovery Tour.
Jeff Szymanski is the executive director of the International OCD Foundation and a clinical psychologist who studied CBT early in his career. He believes strongly in its essential role in the treatment of OCD.
He described people with the disorder as having “sticky” thoughts. These obsessive thoughts are the “O” in OCD. The internal or external behaviors to try to push away these negative or intrusive thoughts make up the compulsions, or “C.” And the capital “D” is for disorder, meaning the thoughts and actions are distressing; time consuming; getting in the way of self-care, relationships, school; and impair one’s ability to function.
CBT and, in particular, ERP help a patient identify and learn to sit with the anxiety. Eventually, that person can say, “Hey, brain, what you think is dangerous isn’t so dangerous and you can quiet down.”
It essentially rewires the brain. Behavior can change the brain.
That’s one reason Szymanski says CBT should be the first course of treatment for children with OCD. But children are not being identified with great accuracy. It can take 14 to 17 years after the onset of symptoms before the introduction of effective treatment. And most symptoms develop around puberty, between ages 8 and 12, when the genes that have been dormant get turned on, he said.
The foundation hopes to reach parents, pediatricians and educators with a direct message: know how to recognize OCD; know what the treatment should look like; and know where to find it.
“There is a ton of stigma about mental illness, and once you get into OCD-land, it’s intensified,” Szymanski said. “Popular culture says you’re eccentric and ‘I’m OCD, too.’”
And true OCD is often unspoken. It’s hard to recognize, as well, when growing up in a family where anxiety is normal, or in a school where behavior might be labeled school avoidance, or when no one else talks about the secret rituals that are too private to mention.
The OCD Foundation has special pages for kids and families:
OCD in Kids: https://kids.iocdf.org/
OCD at School: https://kids.iocdf.org/for-kids/ocd-at-school/
And it has a searchable database for those looking for help, from clinicians trained in treating OCD with CBT.
A fact sheet on the foundation website lists key points about OCD in children in their fact sheet:
What kinds of obsessions do children and teenagers have?
Children may have worries about germs, getting sick, dying, bad things happening, or doing something wrong. Feelings that things have to be “just right” are common in children. Some children have very disturbing thoughts or images of hurting others, or improper thoughts or images of sex.
What compulsions or rituals do children and teenagers have?
There are many different rituals such as washing and cleaning, repeating actions until they are just right, starting things over again, doing things evenly, erasing, rewriting, asking the same question over and over again, confessing or apologizing, saying lucky words or numbers, checking, touching, tapping, counting, praying, ordering, arranging and hoarding.
How common is OCD among children and teenagers?
About half a million children in the United States suffer from OCD. This means that about one in 200 children, or four to five children in an average-sized elementary school, and about 20 teenagers in a medium to large high school may have OCD.
* Author: Aureen Pinto Wagner, Ph.D., Clinical Associate Professor of Neurology, University of Rochester School of Medicine & Dentistry; Member, Scientific Advisory Board of the International OCD Foundation Copyright © 2009 International OCD Foundation (IOCDF), PO Box 961029, Boston, MA 02196, 617.973.5801
The nonprofit Child Mind Institute has an excellent online recourse, Teacher’s Guide to OCD in the Classroom, that includes brief sections on behaviors you might see, behaviors confused with another disorder, how to help, minimize behavior problems, and how to involve peers.