OCD Diagnosis: Understanding the Process

What Is Obsessive Compulsive Disorder (OCD)?

Obsessive compulsive disorder (OCD) is a mental disorder that causes obsessions, which are disturbing and intrusive thoughts, and compulsions, which are actions taken to try to suppress the obsessions. These symptoms take up a significant portion of a person’s day and can make it very difficult to function in everyday life.¹

OCD is characterized by the presence of both obsessions and compulsions:

• Obsessions: Obsessions are persistent, disturbing, and intrusive thoughts that create significant distress. These obsessions are severe enough to interfere with one’s ability to function in everyday life. Examples include health obsessions, fears about harming others, religious obsessions, and superstitious obsessions.
• Compulsions: Compulsions are actions or behaviors that a person does to try to relieve the anxiety caused by the obsessions. Examples include things like cleaning, checking, counting, or reassurance seeking.⁴

How Common Is OCD?

An estimated 1.2% of U.S. adults have a diagnosis of OCD, with a higher prevalence for females than for males (1.8% versus 0.5%). The lifetime chance of developing OCD is 2.3%. Genetics, family history, and stressful life events can increase one’s risk.^2,3

When to Get an OCD Evaluation

If you suspect you might have OCD, it can’t hurt to seek help from a professional. There are a few questions you can ask yourself before deciding to make an appointment with a therapist.³

If you’re wondering whether you might have OCD, ask yourself—do you experience:

• Lasting or unwanted thoughts that keep coming back? (thoughts might be related to germs, aggression, disorganization, sexual, or religious subjects)
• Impulses or images that are disturbing and cause feelings of anxiety?
• Drive to repeat certain behaviors, like cleaning, ordering, checking, or counting?
• A temporary relief from anxiety after engaging in one of these behaviors?
• These thoughts and behaviors worsen during times of stress in your life?

If you answered “yes” to any of the above, a conversation with a therapist could help you know for sure if you have OCD.

How to Get Diagnosed With OCD

OCD is diagnosed by a licensed and trained mental health provider. The provider will take a thorough history, including medical, social, and mental health history, and make a diagnosis based on symptoms that meet certain criteria. In order to meet the criteria for diagnosis, symptoms must be significant enough to impair one’s functioning and not be explained by another disorder.

OCD DSM 5 Criteria

Here are the DSM 5 criteria used to diagnose OCD:

• Presence of obsessions, compulsions, or both on most days for at least 2 weeks
• The obsessions or compulsions take more than 1 hour per day or cause clinically significant distress or impairment in one’s ability to function in daily life
• A person attempts to ignore, suppress or neutralize the obsessions or compulsions with other thoughts or actions
• Symptoms are not due to the effects of a substance
• The disturbance is not better explained by the symptoms of another mental disorder

Other OCD Assessment Tools

In addition to taking a thorough history and discussing symptoms, sometimes a provider will also use assessment surveys, tools, or instruments to gather the necessary information. The most commonly used tool for OCD diagnosis is the Yale-Brown Obsessive Compulsive Scale. This is considered the gold standard for diagnosis, but other instruments are available as well.⁵

Other tools used for diagnosing OCD include:

• National Institute of Mental Health-Global Obsessive-Compulsive Scale
• Obsessive–Compulsive Inventory – Revised
• Florida Obsessive-Compulsive Inventory
• Dimensional Obsessive-Compulsive Scale

Specialized tools used for diagnosing OCD in children include:

• CY-BOCS Child Report/ Parent Report
• The Children’s Yale-Brown Obsessive-Compulsive Scale

Brain Scans & OCD Diagnosis

Brain scans have shown differences in the brains of people with OCD. Specifically, the anterior cingulate cortex (ACC), the anterior thalamus, and, in some studies, the insula are shown to be more active in people with OCD. These areas of the brain can become hyperactive when triggered by a stressful situation that makes OCD symptoms worse.⁶

Brain scans help scientists understand OCD, but they are not currently used in standard diagnosis or treatment. The differences in people’s brains and the cost of the imaging would make this a difficult and ineffective process. Someday, brain scans may be able to help guide diagnosis and treatment.⁶

OCD Diagnosis in Children

Diagnosing OCD in children uses the same diagnostic criteria from the DSM-5 as for adults, but unlike most adults, children often can’t see that their obsessions are not based in reality. They often believe that their fears (germs, bad things happening to someone they love, etc.) are truly going to happen and that their compulsions are preventing these bad results. It can also be difficult to differentiate compulsions from normal rituals that are developmentally appropriate for children. For example, it is normal for children to order things, count things, or have elaborate rituals for bedtime.

Parents can help by keeping track of symptoms in the time leading up to their child’s appointment. It is helpful to write down a list of questions to ask the provider, as well as any previous diagnosis or medications. During the appointment, be sure to ask questions and clarify the treatment plan and what to expect.⁷

The DSM 5 criteria used to diagnose OCD in children include:

• Presence of obsessions, compulsions, or both on most days for at least 2 weeks
• The obsessions or compulsions take more than 1 hour per day or cause clinically significant distress or impairment in one’s ability to function in daily life
• A person attempts to ignore, suppress or neutralize the obsessions or compulsions with other thoughts or actions
• Symptoms are not due to the effects of a substance
• The disturbance is not better explained by the symptoms of another mental disorder

Who Can Diagnose OCD?

OCD can be diagnosed by a licensed mental health professional, including a counselor, therapist, or psychiatrist. Some primary care providers may also be able to diagnose OCD. Because of OCD’s complex nature, it is important to seek a diagnosis from a mental health professional who has experience with OCD.

Can You Self Diagnose OCD?

Only a professional can provide an official diagnosis, which is an important first step prior to seeking treatment. Educating yourself on the symptoms, causes, and treatment options related to OCD can be helpful in gaining a deeper understanding, and determining a path forward. OCD is a distinct mental health condition that involves both obsessive thoughts and compulsive behaviors. As you learn more about OCD, if you feel the symptoms fit your experience, contact a licensed therapist for an assessment.

What Information Will Your Doctor Need?

In order to diagnose someone with OCD, your doctor will need information about your presenting symptoms, medical history, and family’s mental health history. Your doctor will likely ask you many questions regarding your day-to-day thoughts and behaviors. It is important to disclose any medications you use, substance abuse, eating disorders, or any other health conditions because they can impact an OCD diagnosis.

It can be helpful to prepare for your appointment by writing down any previous mental health treatment, family history of mental health disorders, and any significant medical history. This will ensure you provide all the information that may slip your mind when in the office. It can also be helpful for you to start tracking and monitoring your symptoms when you decide to see a healthcare professional. This can be as simple as keeping a journal and tracking obsessive thoughts and compulsions as they come up throughout the day or rating your distress level on a scale of 1-10.

Initial Questions You Might Be Asked About Your OCD Symptoms

Questions you can expect your doctor or therapist to ask during an OCD diagnosis include:

• What symptoms are you experiencing?
• When did you start feeling this way?
• Do you have a history of OCD in your family?
• Have you sought treatment for this before?
• Do you have any history of trauma or loss?
• What are your support systems?
• Do you have any significant medical history?
• Are you on any medications?

Levels of OCD Severity

The Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) is used extensively to both determine the severity of OCD symptoms and monitor treatment progress. This measure has four specifiers that depend upon the symptoms checked during the assessment and is helpful in determining the level of OCD severity.⁸

The levels of OCD severity in the Y-BOCS scale are:

• Mild OCD: Symptoms are present, but not pronounced. The person is able to function well in their daily life.
• Moderate OCD: Those with moderate OCD have more frequent, intense symptoms, and find that their daily functioning is impacted by the disorder.
• Severe OCD: Severe OCD indicates a further increase in intensity, frequency, and severity of symptoms, significantly impacting a person’s ability to cope.
• Extremely severe OCD: At this level of OCD severity, a person will find it very difficult to cope with the intense, frequent symptoms, which may also be comorbid with other mental health conditions, like depression.

Challenges of Diagnosing OCD

One of the challenges of diagnosing OCD is differentiating between it and another diagnosis. There is a lot of overlap in the symptoms between OCD and other disorders like simple phobia, anxiety, and PTSD. Each of these diagnoses can include feelings of anxiety, intrusive thoughts, rumination, avoidance of triggers, and body sensations like rapid heart rate, sweaty palms, and racing thoughts. It is important to get the right diagnosis because this will help determine the best course of treatment.

Common OCD Comorbidities

While OCD can occur on its own, it can also have several common comorbidities – additional mental health diagnoses that a person with OCD might also have.

Here are the most common OCD comorbidities: 

• Depression: Depression and OCD can often co-occur, as the feelings of sadness, lethargy, or hopelessness might arise due to the stress and difficulties of living OCD, and the impact of unwanted, intrusive thoughts characteristic of OCD.⁹
• Anxiety: Intrusive thoughts can often cause an increase in feelings of anxiety, as can catastrophizing worries related to what might happen if a person doesn’t complete the compulsive behaviors or rituals that are part of OCD.¹⁰
• PTSD: OCD and PTSD can often co-occur in people who have a history of trauma. Some people with PTSD end up developing OCD as they develop behaviors that attempt to counteract intrusive thoughts.¹¹
• ADHD: Though less common, it is possible to have both OCD and ADHD. In this case, the symptoms of each disorder often compound. For example, a distracted student might turn to a compulsive ritual to cope.¹²
• Eating disorders: The lines between OCD and eating disorders often blur, making them difficult to distinguish from one another. Repetitive thoughts about food and body image are often accompanied by compulsive behaviors like checking weight or over-exercising.¹³

What Happens After an OCD Diagnosis?

After an OCD diagnosis, a person will need to develop an OCD treatment plan, which can involve an OCD therapeutic intervention, medication, or a combination of both. It is important for the individual to manage stress as much as possible and be aware of and avoid potential triggers that can make OCD symptoms worse. This may include making changes to their schedule or activities.

It can be difficult to talk to loved ones about a diagnosis, but family and friends can be a huge support when a person is diagnosed with OCD. A strong support system can help an individual through the tough days and also be there to celebrate when things are going better. It can also be helpful to talk to others who are dealing with OCD in a therapy or support group.

Treatment Options for OCD

A comprehensive OCD treatment plan usually includes therapy as well as medication management. Therapy is provided by a licensed therapist and medication by a physician or other prescribing healthcare professional. Exposure and response prevention (ERP) is generally considered the most effective therapy for treating OCD. A combination of ERP therapy and medication usually produces the best results.

Treatment options for OCD include:

• Exposure and response therapy (ERP): ERP for OCD is commonly thought of as the gold standard. This highly effective treatment works by gradually exposing a person to things that trigger their obsessions while resisting the urge to engage in their compulsive rituals.
• Medications: There are a few options for medications for OCD, but SSRIs, a type of antidepressant, are most commonly prescribed because they are shown to be safe and effective. These work by regulating serotonin levels in the brain.
• Cognitive behavioral therapy (CBT): CBT for OCD works by breaking the automatic bond between obsessive thoughts and compulsive behaviors. It helps people identify triggers that can worsen symptoms and discontinue compulsive behaviors. Some forms of CBT include exposure as well, in fact, ERP is a type of CBT.
• Eye movement desensitization and reprocessing (EMDR): EMDR for OCD can be helpful in cases where symptoms can be traced back to a traumatic event. for example, someone who has experienced a fire may develop a compulsion to check that the stove is off, candles are out, etc. By going back and healing that original trauma, EMDR can help reduce the symptoms of OCD.
• Mindfulness-based therapies: Therapies such as mindfulness-based stress reduction (MBSR) can be a helpful addition to other therapy modalities, helping a person build awareness of the present moment and learn to tolerate thoughts and feelings without judgment. Times of high stress can cause a worsening of OCD symptoms for some, so managing stress is important
• Group therapy: The benefit of group therapy is that participants can share their experiences of living with OCD, as well as tools and solutions, with each other. Many people find that being in a room with people who share the same OCD diagnosis can be very helpful.

When to Seek Professional Support

Anyone who suspects that they may be experiencing symptoms of OCD should seek a professional assessment. OCD is a serious disorder that is usually chronic and does not resolve on its own without proper treatment. With the proper diagnosis and treatment, people who live with OCD can lead happy and fulfilling lives.

An online therapist directory or online therapy platform is a great place to start for finding a therapist who specializes in OCD treatment, and there are lots of online OCD resources like NOCD where people can get more specified care. It is also a good idea to check with insurance benefits and know what to expect regarding coverage and out-of-pocket costs. If a person is not clear about their symptoms or they have a complex mental health history, they should consider seeing a psychiatrist rather than a primary care provider. Online psychiatrist options may be a good choice for finding OCD medication management for some people.

Can an OCD Diagnosis Be Reversed?

Like any other condition, OCD can sometimes be misdiagnosed. This can be due to symptoms that resemble OCD but are actually caused by other disorders, misinterpretation of symptoms, or lack of provider specialty training. While diagnosis “reversal” is not typically used in mental health, if an individual feels that they may have been misdiagnosed they should talk to their provider about possibly exploring another diagnosis.

What to Do If You Think You Got a Misdiagnosis

Whether or not to get a second opinion is an individual decision. If you are feeling uncertain about the accuracy of the diagnosis, not responding to treatment, noticing additional symptoms, or wanting to see a provider with specialized training, don’t be afraid to find another professional to talk to. Ultimately, each person should speak up and advocate for themselves if something doesn’t sound right.

Can I Qualify for Disability?

For some, it can take a lot to get their disorder managed by going through treatment, and they may need to take some time off work for mental health. If symptoms are significant enough to cause impairment at work, a person may qualify for short-term disability coverage for their OCD. The HR or benefits provider would be a good person to talk to for more information.

How Do I Accept My Diagnosis?

Getting a diagnosis of OCD can be scary and difficult to accept. While OCD is not curable and is generally considered a lifelong, chronic condition, it is important to remember that it is manageable. Therapy is a crucial step for learning to accept an OCD diagnosis and beginning to learn the tools to manage one’s OCD.

Additionally, allowing yourself to feel the emotions that arise after a diagnosis is an important step to acceptance. Your feelings may include sadness, fear, and anger. All these emotions are normal and valid. If you are struggling to sit with your emotions, try talking with a loved one whom you feel safe with, or try journaling about your emotions as they arise.

If you are worried about the implications of OCD in terms of passing the disorder on, remember that although genetics play a factor in developing OCD, they are not the sole determinant. Environment and parental role modeling are important, too, so staying healthy and keeping symptoms under control will help reduce the risk of your children developing OCD.