Supporting children and young people with obsessive compulsive disorder (OCD)

What is OCD?

Obsessive Compulsive Disorder (OCD) is a type of anxiety disorder. Children and young people with OCD may have unwanted, repetitive thoughts (obsessions) causing them to carry out different actions (compulsions) in order to cope with the anxiety brought about by the unwanted thoughts. Depending on how severe the anxiety is, children and young people with OCD may have very high levels of anxiety and distress, resulting in their obsessions and compulsions affecting their daily lives.

Signs that a child or young person may be affected by OCD

A diagnosis of OCD can only be made by a medical professional. However, children and young people may show early signs that you can look out for. Some people with OCD may have ideas, thoughts or even images that keep on repeating in their minds. These thoughts or images may feel silly or distressing to a young person and may be very difficult to get rid of. Children and young people with OCD may feel scared, doubtful, guilty or even depressed by these obsessions and compulsions.

 Children and young people with OCD may have a strong need for reassurance or ask people to check things for them in order to confirm that it is ‘right.’ People with OCD may feel that their mind is being ‘taken over’ by these disturbing, repetitive thoughts and therefore feel that they need to do something about it- even if what they do doesn’t necessarily make sense and actually worsens the situation. You may therefore notice patterns of behaviour that children or young people show even if there seems to be no reason for these behaviours, for example switching the lights on, off and on again before entering a room.

Children and young people with OCD may also feel a sense of temporary relief after performing their compulsive actions, leading them to seek out strict routines in their daily activities. You might therefore find, for example, that a child or young person, is unusually worried about germs, resulting in them washing their hands compulsively and repetitively throughout the day.

These are examples of behavioural traits in those with OCD, however, if you are concerned it is important to seek out your GP help for an official diagnosis.  

Common issues parents and carers may have to contend with

Having a child or young person with OCD may pose many challenges to parents and carers. Your child may experience disruptions in their home life, schoolwork and friendships. Younger children may not be able to fully explain or understand their obsessions and compulsions, whilst older children may feel embarrassed by these thoughts and behaviours. As a result, parents and carers may often face challenges with their children’s self-esteem, extreme anxiety, embarrassment, bullying and children worrying that they are “losing control” of themselves.

Additionally, many children and young people with OCD may show extreme fear towards their obsessive thoughts, feeling that they have to do something (a compulsive behaviour) to prevent these thoughts from becoming a reality. This may lead to a negative cycle of thoughts and behaviours, where children and young people feel overly responsible for protecting themselves and their loved ones from the obsessive thoughts. Your child may become so focused on their OCD that they are unable to learn that the cycle can be broken - the fear of what could happen if they do not complete the compulsion becomes too overwhelming to avoid or work through and try to manage.

Families may find themselves dealing with feelings of tension, anger and guilt in trying to cope with a child or young person with OCD. This may lead to conflict between family members and result in feelings of isolation. Parents and carers may have to deal with siblings who feel embarrassed by their brother or sister’s compulsive behaviours and may themselves become frustrated when trying to help them manage their behaviour. Parents and carers may also have to contend with conflict in school environments, where it may be difficult to know what is needed to help the child or young person work around their unique challenges.

Lastly, the treatments for OCD include both Cognitive Behavioural Therapy (CBT) and medication, in some cases. This may add additional financial stress on parents and carers, sometimes also requiring extra time off from work to attend appointments. The stigma surrounding therapy and medication may be a significant issue for parents and carers and their families to contend with.

How to support a child or young person with OCD

The obsessive thoughts that a child or young person experiences may greatly disturb them. Therefore, the best way to help someone with OCD is to try and really understand the obsessions and compulsions they have. Not all children and young people may initially feel comfortable enough to share their thoughts or behaviours, however this may happen at some point. Try not to show distress or judgement towards your child when they express their thoughts and feelings.

Reassuring a child or young person with OCD is one of the most important ways in which you can help. Although some of their compulsions are unusual and cannot be participated in, it is very important to have a conversation with your child about this and explain what you can, and cannot, help with. It is not possible for everyone to adapt around a child’s compulsions, and this would also not support treatment. It is important for a child or young person with OCD to know that their loved ones are supportive, without enabling further compulsive behaviours to form.

An important point to keep in mind, is that children and young people with OCD do not have control over the disorder. OCD is an anxiety disorder, and it may be helpful for you to remind yourselves of this- especially in very stressful times. It is important to remain calm, patient and understanding wherever possible and to work through any episodes as they arise.

What to say to schools and colleges

Open, consistent communication between homes and schools is very helpful. Consider having a “concerns book” or a type of diary of the child or young person’s obsessions and compulsions. This is useful to plan around the child or young person’s anxieties in the home and school environment, and to monitor progress in managing their compulsions over time.

Teaching staff should attempt to be patient with children and young people who have OCD. Punishing the child for their behaviours will not be helpful, but it can be positive to help teach the child acceptable behaviours and to obey classroom rules along with their peers.

Teachers should be aware of possible triggers for the child or young person with OCD, as this may help to know how to respond in the classroom. Perhaps the child or young person will need some time alone to work through their anxiety or may prefer to discuss what is worrying them with a teacher or trusted friend. For example, if a child or young person has difficulty in meeting school deadlines, it may be useful to provide an extension or some modification to these tasks in order to lessen some of the anxiety and support the completion of school tasks.

OCD may also significantly affect a child or young person’s ability in an exam, and it is important to take this into consideration. Having a detailed classroom and exam schedule may help to manage anxiety, and it might be useful to consider providing extra time for the completion of tasks and exams.

Children and young people with OCD may be easy targets for bullying, especially if they also struggle with low self-esteem. It is therefore important for schools to be vigilant, and to address any instances of bullying as soon as it is observed.

What to say to siblings

It is important for siblings to acknowledge the diagnosis of OCD and to try and learn more about the disorder. Particularly, it is helpful for everyone in the family to know that OCD symptoms are part of a treatable disorder that can be managed with the correct help. However, it is not possible for someone with OCD to simply “snap out of it,” and therefore siblings should try to be patient and understanding wherever possible.

If a child or young person with OCD is old enough and comfortable to do so, it may be helpful for them to share what OCD may feel like with their siblings. This gives the child or young person with OCD a chance to explain the problems they may be facing, and it may be easier for siblings to understand why the OCD symptoms are ‘better’ on some days and ‘worse’ on other days- and how to help.

Siblings may also be able to better connect with a child or young person with OCD than adults or friends, as they may be more trustworthy to the child or young person with OCD. Therefore, siblings can help encourage continuation of treatment, to continue to share their experiences, and to feel more able to reach out for help or support when needed.

Finally, family life at home should remain as normal as possible and that siblings know this and feel comfortable in going about their daily routines - as long as there is no mocking or bullying of any compulsive behaviours when they do occur in their brother or sister. Including their brother or sister with OCD in structured sibling activities may encourage a better relationship between siblings.

What to say to extended family

Some of the advice that may be helpful for siblings can be just as helpful for extended family members. Specifically, it is important to know that children and young people with OCD cannot “snap out of it.” Therefore, it is important to know what OCD is and how to manage it effectively.

Whilst it is important to be aware of OCD, extended family members should not try to adapt to any compulsive behaviours a child or young person may experience. Instead, extended family members should try to keep to as normal a routine as possible and include the child or young person with OCD in these activities.

It may also be helpful for extended family members to learn more about the various obsessions and compulsions associated with OCD, as well as those applicable to your child. In this way, they can be more informed about OCD and react in a supportive way when confronted with a child’s compulsive behaviours.

Additional support for parents and carers

The following organisations offer specific support for OCD:

• OCD-UK: National charity offering support to those with OCD and their families

• OCDaction: National charity offering support to those with OCD and their families

• Top UK: Support for OCD, phobias and anxiety

• Anxiety UK: information and guidance for those with anxiety and OCD