OCD in children and adolescents

• are unwanted thoughts, impulses or mental images.
• are often frightening and are about dreadful things that might happen.
• are unpleasant and experienced as intrusive. They often cause anxiety or disgust.

Compulsive thoughts are thoughts that constantly force their way into a person’s consciousness. These thoughts are highly unpleasant and extremely troublesome. Most children and adolescents with OCD recognise that their compulsive thoughts and actions are extreme or unreasonable, and they will try rationally to distance themselves from them. Some, especially younger children, are not fully able to take a rational step back from these thoughts. 

Compulsive actions are characterised by:

• repeated actions (for example handwashing or checking behaviour) or mental rituals (for example counting or repeating words) that a person feels compelled to perform.
• being carried out with the aim of reducing discomfort or anxiety.
• being carried out in a very specific way or in accordance with a specific pattern.

Underlying these actions is often a compulsive thought that, by performing them, you will be able to avert a disaster that you fear will otherwise happen. This may, for example, be that you have to knock three times on the table every time you sit down, otherwise a good friend will die.

In some children and adolescents with OCD, there are no certain compulsive thoughts behind the actions. This applies especially to small children. However, they nevertheless experience strong discomfort if they do not perform the actions.

Today, OCD is regarded as a disorder of the brain. Here, a disturbance is seen in the neurotransmitters of the brain. Mainly serotonin plays an important role. When treatment is effective, brain scans show that the neurotransmitter disturbance becomes more normal.

As yet, however, little is known about how psychological and biological aspects in the brain interact with OCD.

Many children and adolescents with OCD have a hereditary risk of developing the disorder. You have a higher risk of developing OCD if someone in your family has OCD.

Some children and adolescents with OCD have special personality traits. This may be a pronounced sense of order or excessive caution. However, a large proportion of children and adolescents with OCD do not have these traits.

Experiences in your life may occasionally maintain your obsessive-compulsive symptoms. They may also directly amplify them. This may, for example, be bullying, death and serious accidents. A bad atmosphere in the family can also impact your symptoms negatively. It is therefore important to look at many aspects of your life. Your family and other key persons should also be involved.

Many hide their symptoms

OCD used to be considered a relatively rare condition. Many OCD sufferers perceive their compulsive thoughts and actions as absurd and embarrassing. Therefore, they often find it embarrassing to reveal them to their surroundings. Many have therefore lived with their symptoms for a long time before they get treatment.

This means that only themselves and their immediate family know about their symptoms and know how they affect their daily life.

Symptoms typically manifest themselves gradually over several years. They often start with a few daily rituals, which slowly develop into more and more things that need to be done. However, the symptoms can also occur suddenly. Most often, the symptoms are first seen at the age of 8-10 or 14-15.

Many relatives may find it difficult to understand that the OCD sufferer cannot just ‘pull himself or herself together’ and stop performing the compulsive actions. But opposing the obsessive-compulsive symptoms often induces so much anxiety and discomfort that many children and adolescents have given up the struggle by the time they attend an examination and receive treatment.

If you have OCD, you risk becoming socially isolated. This happens because it can be difficult for you to be around other people. You might have to wash your hands many times a day and you are always unsure whether you have washed them thoroughly enough. Others find it difficult to leave their homes because they are afraid to accidentally reveal the obsessive-compulsive symptoms that they are trying to hide.

Children and adolescents with OCD exhibit many different compulsive thoughts and actions.  Over time, the obsessive-compulsive symptoms may change content and nature.

The most common obsessive-compulsive symptom is fear of dirt and contagion. This anxiety often entails rituals such as excessive handwashing or showering. Here, the compulsive thoughts constantly revolve around the danger of contracting disease yourself or causing others to become infected or perhaps even die. This may, for example, be cancer or AIDS.

Checking rituals are another common obsessive-compulsive symptom. Checking rituals mean that you check certain things over and over again, for example whether the water is running in the bathroom, the light has been switched off in the basement or the oven is still on.  Checking rituals make it very difficult for some OCD sufferers to leave their home because they are unable to conclude their rituals.

Some OCD sufferers have compulsive thoughts about death or fear of harming other people or themselves. Some are bothered by compulsive thoughts and mental images of attacking or killing somebody.

Some OCD sufferers perform mental rituals. Mental rituals are compulsive actions performed mentally. They are therefore not visible to others. 

These mental rituals may be counting manias, where you need to count certain things around you. It may also be that you have to say certain words aloud to yourself.

Mental rituals can be just as disruptive as visible rituals. They are often more difficult for others to notice, as the visible signs of mental rituals may simply be an impaired ability to concentrate, irritability or tiredness.

In children and adolescents, symptoms of mental rituals may manifest themselves in that they find it harder to do their schoolwork. It may, for example, be that they have to count letters or figures a certain number of times before they can proceed with their homework.

Some OCD sufferers have compulsive actions involving symmetry. This means that they want the things around them to be arranged in a very specific way. Others have to perform things a specific number of times.

Many children and adolescents may keep their OCD symptoms hidden from the people around them and ‘save up the symptoms for later’.

This is, for example, seen in connection with hospitalisation or when the OCD sufferer has to participate in camp trips. Here, some may suppress the urge to perform their rituals. It is therefore often seen that the OCD sufferer does not have visible symptoms outside his or her home, for example during school hours.  Back home, however, the symptoms flare up violently. 

Often, children and adolescents say that they have kept a careful internal record of the compulsive actions they still had ‘outstanding’ when returning home from school.

At home, the child or adolescent often:

• Performs prolonged rituals (for example handwashing or showering)
• Exhibits avoidance behaviour, i.e. avoids certain places in the house or avoids touching certain things
• Isolates himself/herself
• Asks his or her parents repeatedly about whether he or she has behaved correctly
• Is afraid and sad
• Becomes furious, desperate and anxious if prevented from performing his or her compulsive actions
• Involves his or her parents in his or her rituals

Is unable to concentrate on homework, books or films. 

Perhaps no symptoms are seen at school, as many children with OCD are able to hide their symptoms and are embarrassed to reveal them. If symptoms manifest themselves, they often involve that the child or adolescent:

• Needs to leave the classroom in the middle of the lesson due to a desire to wash hands
• May have difficulty concentrating in class because of compulsive thoughts
• Avoids touching others or things belonging to others.
• Seems tense and sad.

Reacts violently if anyone gets in the way of his or her need for tidiness.

Possibly no symptoms, as many children with OCD are able to conceal the symptoms and are embarrassed to reveal them. The child may need to leave lessons more frequently because of the hand-washing compulsion. The child may have difficulty concentrating in class because of compulsive thoughts. The child avoids touching others or things belonging to others. The child seems tense and sad. The child reacts violently if anyone gets in the way of his/her need for tidiness.

In children and adolescents with typical OCD symptoms, the diagnosis is generally not difficult to make.   Both examination and the initial treatment are usually handled by a specialist in child and adolescent psychiatry or by a psychologist with expertise in OCD.

The diagnosis is made on the basis of the degree of severity of your symptoms. The degree of severity is determined based on a thorough interview. Specific questionnaires are often used for both you and your family. They have been prepared for the purpose of making the diagnosis of OCD and they highlight various aspects of the disorder. These include:

• What obsessive-compulsive symptoms you have
• How much they make themselves felt in your daily life
• How much they burden you
• The degree of anxiety associated with the symptoms.

At the start of your treatment, it is important that you acquire knowledge about OCD. Therefore, Central Denmark Region offers education about all relevant OCD-related matters for you and your family. This is called psychoeducation and provides you and your family with methods to tackle the disorder in your daily life.

During this part of the treatment, a decision will also be made on whether you should be relieved of some of the things that may cause you stress (schoolwork, study job, etc.). You may also talk about which people in your network should be informed about your OCD symptoms.

The key treatment for OCD in children and adolescents is cognitive behavioural therapy. This is the treatment with the best documented efficacy. It is recommended for children, adolescents and adults with OCD.

During the course of your therapy, you will need to get to know your automatic thoughts and learn how to develop more beneficial strategies. Cognitive therapy works with your thoughts, feelings, behaviour and bodily perceptions. Together with your therapist, you talk about other ways of thinking and acting. These consultations are supported by small home assignments.

The therapist uses exposure techniques in the therapy. This means that you are put in situations in which you experience symptoms of OCD. These are situations that will trigger your compulsive thoughts and thus increase your urge to perform compulsive actions. In these situations, an attempt is made to change your behaviour. This happens gradually, cautiously and in small doses.

The so-called response barrier will then be used. This means that you practise not performing your compulsive action. Based on your symptoms, you and your therapist will often prepare a programme of which symptoms are most important to practise first.

Your symptoms may also have a big impact on the people around you. Your family or other people close to you have often become actively involved in your compulsive actions. Therefore, it is usually important to involve your whole family in your treatment.

The basic principle in tackling the rituals is to challenge and confront your anxiety in small gradual steps. This is done from the least to the most anxiety-inducing situations. This may, for example, be washing hands for a shorter time or fewer times.

In mild cases of OCD, cognitive behavioural therapy can often stand alone. In more severe OCD, medication may be needed as a supplement. However, the pharmacological treatment should always be combined with therapy.

If you are only treated with medication, this will most often not result in a cessation of obsessive-compulsive symptoms. The symptoms typically decrease by around 25-45%. Approximately three-quarters of children and adolescents with OCD experience some degree of improvement from pharmacological treatment. In the vast majority of OCD sufferers, the effect is only seen several weeks after treatment has started. Therefore, the medication will most often be given for at least 12 weeks to be sure that the dose is appropriate.

Side effects

Some experience side effects from the medication. This occurs especially at the beginning of the treatment. Most side effects disappear after a few weeks on the medication. The ideal dose of the medication differs from person to person. If there are persistent and unacceptable side effects, they always disappear when you stop taking the medication.

It is important that you attend check-ups with your doctor or psychiatrist when taking medication. If you do not experience a good effect or have many side effects, it will often be possible to find another brand that works better and gives fewer side effects.

Most often, the psychiatrist recommends that the pharmacological treatment be continued for at least six months after you are feeling better. You can then gradually taper off the medication. It is important to taper off the medication under the supervision of your doctor and over a period in which you feel well and are not exposed to stress – such as starting school or moving to a new home.

Do not be embarrassed by your disorder

• Realise that you are not alone. At any given school, there will generally be a number of people with OCD.
• There is no shame in having OCD – not even when OCD takes control of your actions.
• It is completely natural if you feel embarrassed about your OCD symptoms, and that you perhaps find it difficult to talk about them at first.

Be open

• Talk to your parents or a close friend about the thoughts that are oppressing you, and seek help.
• Be open and honest with your therapist. To enable your therapist to give you the best possible help, it is important for you to tell him/her as much as you can about your obsessive-compulsive symptoms.

Follow the treatment

• Although it may be difficult at times, it is important to participate in the treatment as much as you possibly can and to stick to the agreements your therapist makes with you and your parents.
• You need to accept that, in order for your parents to give you the best possible help, they must try to avoid helping you with your rituals; instead, they need to support your OCD-free, healthy side.
• Try to be active and participate as much as possible in activities with other people. The more you do the things you enjoy doing in the company of others, the more you will overcome your obsessive-compulsive symptoms in your everyday life.

• Try to find out what your child is thinking. Your child will perhaps keep some thoughts secret to protect you or because he or she thinks that their thoughts are too embarrassing.
• Try to gain an impression of how much compulsive thoughts make themselves felt in your child’s everyday life.
• Find out whether your child is able to resist the symptoms. Does your child have any strategies for combating OCD?
• Help your child try to resist the symptoms by gradually reducing their scope.
• Try to divert your child by doing fun, entertaining things together.
• If you have become involved in your child’s rituals yourself, you must cautiously try to withdraw again. Instead, try to explain to him or her that the best way to regain control over his or her thoughts is to resist the rituals.

Talk to your child every day and agree fixed times for talking about how things are going with the disorder, so that OCD does not completely dominate your time together.

Being the parent of a child who suffers from OCD can be challenging. It is important that you remember that obsessive-compulsive symptoms have nothing to do with a lack of willpower. As parents, you can support your child by encouraging him or her to seek treatment.

It is important for you not to become involved in your child’s compulsive thoughts and compulsive actions. This will only aggravate the symptoms. Instead, try to focus on normal things in the time you spend with your child in order to reduce the impact of the obsessive-compulsive symptoms.

For a boyfriend or girlfriend, siblings and other relatives, it may be particularly difficult to find out when to provide support and when to resist. It is not uncommon for two parents to react differently to the pressure resulting from OCD. This can create additional family problems in the form of arguments and problems in the couple’s relationship.

When you have a vulnerable child, you may tend to think that the best way of offering support is to ‘remove all obstacles from the child’s path’. However, in doing this, you risk depriving your child of the possibility of tackling his or her problems himself or herself and developing good solutions to the problem.