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A young boy spent eight hours a day on rituals to ensure that his dog was safe, including securing windows and doors and patrolling his home for perceived danger. A teenager’s dread of contracting AIDS cut her off from ordinary experiences like a first kiss. Children and adolescents with obsessive compulsive disorder (OCD) are consumed by performing rituals to make terrifying thoughts and images go away, and thus struggle to enjoy childhood. Developmental milestones are missed, family life can be upended, and physical problems may appear from the constant stress.
OCD is one of the most common childhood psychiatric illnesses, yet it often takes more than a decade from onset to receive appropriate treatment. For the majority of patients, OCD symptoms appear between ages 8 and 12 or in the late teens and early 20s.
McLean’s new Child and Adolescent OCD Institute, located at McLean SouthEast in Middleborough, Massachusetts, was created to bring the most effective evidence-based treatment to patients as early as possible in the trajectory of the illness. Because a dearth of trained therapists makes effective OCD treatment hard to find, the program was intentionally designed to accept private insurance, thereby increasing access to care.
“Patients in our adult OCD program often describe developing their symptoms as kids and, as in any illness, the earlier you catch it, the more effective the treatment will be,” explains Diane Davey, RN, MBA, program director of McLean’s adult program, the Obsessive Compulsive Disorder Institute. “They couldn’t go to school or didn’t have typical social interactions, so they developed problems in addition to the OCD. They are often depressed because their lives are not what they had hoped they would be.”
The new program, affectionately nicknamed “OCDI Junior” by its staff, is unusual by virtue of its mere existence: the only other residential program for youth with OCD in this country is in Wisconsin. McLean’s 12-bed facility, which was designed to feel more like a home than an institution, accepts patients between ages 10 and 17 and already has 40 youngsters on the waiting list.
McLean hopes the new program also will become a research hub and an anchor for OCD educational outreach.
“We can’t solve the access problem only through the residential program,” points out Lisa W. Coyne, PhD, program director of the Child and Adolescent OCD Institute. “We also need to be doing research and lots of community outreach—including free programs for parents and consultations with local providers. Philanthropy will be critical to accomplishing this broader vision.”
Measuring outcomes will be an integral part of the program as well. By collecting data on these young patients, McLean will arguably have the richest trove of information in the country about OCD across the lifespan, according to Davey. “That will help us find answers to some of the most vexing questions, such as what causes OCD? Why do some people respond well to treatment and others don’t? How do we tailor treatments to the individual to make them more effective?”
The Child and Adolescent OCD Institute treatment approach is rooted in two complementary therapies that have produced impressive outcomes for many people. Exposure and response prevention (ERP) encourages patients to do the things they fear then helps them refrain from the ritualized behavior that quells the resultant anxiety. Meanwhile, acceptance and commitment therapy (ACT) teaches patients to tolerate the unsettling feelings their obsessions provoke and helps them focus on the long-term payoff of treating their illness. ACT is particularly helpful with children, who often have trouble tolerating ERP. The program also educates patients’ parents about ERP and ACT, so the children can continue their progress when they return home, explains Coyne.
Coyne often thinks about the boy who feared for his dog’s safety. The child’s other obsession with rule-following had prevented him from playing sports with other kids. Coyne asked his mother to visualize what a life free of OCD would look like for her son. “She started to tear up and answered: ‘I have this picture of him in his soccer gear, on a grassy field. It’s a sunny day and he is running and laughing. He is full of joy.’”
If you would like to hear about opportunities to support the research or clinical goals of the Child and Adolescent OCD Institute, please contact the Development Office at 617.855.3415.