Obsessive Compulsive Disorder in children and young people: information for parents, carers and anyone who works with young people

The word ‘obsessive’ gets used commonly. This can mean different things to different people. Obsessive Compulsive Disorder(OCD) is a type of anxiety disorder. In this condition, the young person suffers from obsessions and/or compulsions that affect their everyday life, like going to school on time, finishing homework or being out with friends.

What are the symptoms of OCD?

Some people have thoughts, ideas or pictures that come into their mind over and over again. They are difficult to get rid of and can feel silly or unpleasant. These are called obsessions. Some examples of obsessions include:

• “I must count to twenty or something bad will happen”
• worrying about germs and disease
• worrying about things being tidy.

Some people feel they have to do something repeatedly even if they don’t want to or it doesn’t make sense. These are called compulsions. Some examples of compulsions include:

• repeatedly checking that the light is switched off
• washing hands again and again
• counting or repeating words in your head.

Often people try to stop themselves from doing these things, but feel frustrated or worried unless they can finish them. Problems with obsessions and compulsions can cause distress and worry, and can begin to affect young people at home with their families or at school with friends

Many young people have mild obsessions and compulsions at some time, for example having to organise their toys in a special way, or saying good night a certain number of times. This is normal and may be the result of worry due to stress or change.

If you are worried that a young person may have OCD, you need to think about the following questions:

• do the compulsions upset the child?
• do they interfere with the child's everyday life (e.g. school, friends, etc.)?

If the answer to these questions is ‘yes’, it may be that the young person has OCD. If this is the case, you should seek professional advice.

How common is it?

OCD can affect people of all ages irrespective of their class, religion or gender. It usually starts in childhood. It is thought that 1–2% of the population have OCD. This means that at least 130 000 young people suffer with OCD.

What causes OCD?

We do not know the cause of OCD for certain. Research suggests it may be due to an imbalance in a brain chemical called ‘serotonin’. It may also run in families and in people with tics (jerky movements) in the family. Very occasionally, OCD can start after an illness. It can also occur after a difficult time in their life like having an accident.

There are two treatments that are helpful for OCD:

• Behaviour therapy
• Medication.

These can be given on their own or together. If possible, a young person should have access to both forms of treatment.

• Behaviour therapy starts with an assessment of the problem. This can include the young person and family keeping a diary of the obsessions and compulsions. The aim of the treatment is to teach young people how to be in control of the problem, by tackling it a little bit at a time. The young person designs the treatment programme with the therapist as it is important to be actively involved in planning
• Exposure and Response Prevention (ERP) is when the therapist helps the child to face the things that they fear and have been avoiding. They are taught a wide range of skills to manage the anxiety that OCD creates.Often parents or other family members get very involved in the OCD rituals. Families need to learn about OCD, and also about how to help their child combat it. This can involve parents working with the child and therapist to find ways of helping their child to resist the rituals and being able to say ‘no’.
• Medication can be helpful in controlling the OCD. Unfortunately, many people who improve on medication become unwell again when the medication is stopped. Some people who need medication may have to continue taking it for a long time.

OCD is a common problem, and your GP will be able to help and advise you as to what you need to do. If the young person needs more specialist assessment and treatment, the GP may suggest a referral to a Child and Adolescent Mental Health Service (CAMHS).

If the young person has been unwell for a long time, or their life has become severely affected by OCD, other professionals may need to help too - for example, teachers or educational social workers may be able to help the young person get back to ordinary life at school or college.

"It started without me really noticing it. I got anxious about someone in my family dying – so I began to tap three times, when I got worried, for good luck and that would calm me down. Then I had to do it before I could go to sleep at night –not once but 3 x 3.

When I watched the programme on TV about those germs in hospital it began to get worse. I couldn’t tell my Mum or Dad about it because it sounded so silly. I had to wash my hands all the time because I thought I would pass on an infection and someone would die. It was mainly at home, but then I began to worry that I would catch something at school.

I made my Mum wash my school uniform every day. She tried to say no, but I would get so worked up that she would give in. It came to a head when I couldn’t get to school on time because I was spending hours in the bathroom in the morning. I had to wash my hair three times as well as going through washing in a set order. If I was interrupted because someone needed the bathroom, I had to start again.

Mum got me some help. I didn’t want to be seen as some psycho person, but Dr Roberts was really nice and understood why I was so worked up about everything. That was when I was 14. Now I am 18. It was hard work doing the therapy. It is called CBT. You have to try and work out why you are so anxious and try and control it. Now I am at College and doing a course that I like. I still do some counting, but I can keep it under control."

International OCD Foundation  - An international not-for-profit organization made up of people with Obsessive Compulsive Disorder and related disorders, as well as their families, friends, professionals and others.

OCD Action - National charity for people with Obsessive-Compulsive Disorder  and related disorders such as body dysmorphic disorder, compulsive skin picking  and trichotillomania.

OCD-UK - A national charity working with and for people with Obsessive-Compulsive Disorder (OCD).

• Heyman, I. (1997) Children with obsessive-compulsive disorder. BMJ, 315, 444.
• Rutter’s Child and Adolescent Psychiatry, Fifth Edition (2008). Publisher: Wiley-Blackwell.
• National Institute for Health and Clinical Excellence: Clinical guideline 31:  Obsessive-compulsive disorder: core interventions in the treatment of obsessive-compulsive disorder and body dysmorphic disorder. 
• Great Britain. Office for National Statistics: Census 2001: Population report, United Kingdom, all ages.

Series Editor: Dr Vasu Balaguru

With grateful thanks to Dr Kashmeera Naidoo.

This leaflets reflects the best possible evidence at the time of writing.

© March 2012. Due for review March 2014. Royal College of Psychiatrists.