Attention-deficit hyperactivity disorder and hyperkinetic disorder: information for parents, carers and anyone working with young people

‘Attention deficit (ADD)’, ‘attention-deficit hyperactivity disorder (ADHD)', ‘hyperkinetic disorder' and ‘hyperactivity' are various terms used by people and professionals. These differences in terminology can sometimes cause confusion. All the above terms describe the problems of children who are hyperactive and have difficulty concentrating.

What are attention-deficit hyperactivity disorder and hyperkinetic disorder?

We do not know exactly what causes these disorders. ADHD can run in families. It is more likely in children who have significant traumatic experiences as a child.

Sometimes parents feel blamed for not having controlled their child, but there is no evidence that poor parenting directly causes ADHD. However, it is important to note that parents can play a crucial role in helping and managing a child with ADHD.

What are the symptoms?

ADHD can present with different behaviours depending on the age, setting (i.e. school, home, playground) and even motivation (e.g. when doing an activity or something a child likes).

Not all children have all the symptoms. This means some can just have problems with poor attention, while others are mainly hyperactive.

Children with problems of attention can appear forgetful, distracted, not seeming to listen, disorganised, take ages to start doing things and then when they do they rarely finish it.

Children with hyperactivity seem restless, fidgety, full of energy ‘always on the go’. They may seem loud, noisy with a continuous chatter. 

Children with symptoms of impulsivity do things without thinking. They have difficulty waiting for their turn in games or in a queue, and interrupt people in conversation.

What other problems can a person with ADHD have?

Children with ADHD can have other problems such as learning difficulties, autism, conduct disorder, anxiety and depression. Neurological problems like tics, tourette’s, and epilepsy can also be present. Children with ADHD can have problems with coordination, social skills and seem to be disorganised.

How long will they have ADHD?

About 1 in 3 children with diagnosis of ADHD can grow out of their condition and not require any treatment when they are adults. The majority who receive specialist treatment tailored to their needs may benefit considerably. They will have been able to catch up with their learning, improve their school performance and make friends.

Some are able to cope and manage by adapting their careers and home life. However, some can have major problems, even as adults, requiring treatment. They may also struggle with difficulties in relationships, at work, in their mood and using drugs or alcohol.

There is no single, simple, definite test for ADHD. Making a diagnosis requires a specialist assessment, usually done by a child psychiatrist or specialist paediatrician. The diagnosis is made by recognising patterns of behaviour, observing the child, obtaining reports of their behaviour at home and at school. Sometimes a computerised test may be done to aid the diagnosis. Some children also need specialised tests by clinical or educational psychologist.

How is it treated?

A child suffering from ADHD needs treatment across all situations where the difficulties occur. This means support and help at home, school, with friends and community.

Firstly it is very important for the family, teachers, professionals to understand the child’s condition and how it affects them As they grow up the young person themselves need to be aware of their condition and how to manage it.

Teachers and parents may need to use behavioural management strategies like reward charts. Parents/family may find parent training programmes helpful, especially in managing the defiant behaviours which may arise from their hyperactivity.

At school, children may need specific educational support and plans to help with their daily work in classroom and also homework. They may also need help to build their confidence, develop their social skills. It is important that there is good communication between home, school and the professionals treating the child to ensure that the ADHD symptoms are treated as well as possible, and that the child achieves their best potential.

Medications can play an important role in managing moderate to severe ADHD. Medications can help to reduce hyperactivity and improve concentration. The improved concentration gives the child the opportunity and time to learn and practise new skills.

Children often say that medication helps them to get on with people, to think more clearly, to understand things better and to feel more in control of themselves. Not all children with ADHD will need medication.

A child with ADHD can present with very difficult behaviours at home, school or outside. However, they still need to be boundaries and discipline. Having ADHD does not mean they can disobey you or behave inappropriately (e.g. swearing or being violent). A healthy lifestyle with balanced diet and activity can help.

Children with ADHD can become easily frustrated because of their poor attention span and high energy levels. Some of the following can help manage these difficulties:

• Give simple instructions. Stand near them, look at them and tell them slowly and calmly what you want them to do, rather than shouting across the room.
• Praise your child when they have done what is required, however small it is.
• If needed, write a list of things to do and put it somewhere where it can be seen clearly (e.g. door of their room, bathroom).
• Break any task, like doing homework or sitting on dining table, to smaller time spans such as 15-20 minutes.
• Give them time and activities to spend their energy like basketball, swimming.
• Change their diet and avoid additives. There is some evidence about the effect of diet on some children. They may be sensitive to certain food additives and colourings. If parents notice that certain foods worsen hyperactivity, these may be avoided. It is best to discuss this with your doctor or specialist dietician.

Many parents find it helpful to attend parenting programmes, irrespective of whether child is being treated for ADHD. Some areas offer parenting programmes and support groups specifically for parents of children with ADHD.

How do I get help?

Your GP, teacher or school nurse can refer you to a specialist to complete an ‘assessment’ and offer treatment. They may refer you to a paediatrician (Child doctor) or to a child and adolescent mental health service (CAMHS).

Medications used to treat ADHD are broadly divided in two groups:

• Stimulants like methylphenidate and dexamphetamine
• Non stimulants like atomoxetine.

Stimulants have the effect of making people feel more alert, energetic, and awake. In a person suffering ADHD, they can improve attention and reduce hyperactivity. The stimulants used in the treatment of ADHD include methylphenidate (previously commonly known by the name ‘ritalin’) and dexamphetamine.

Methylphenidate is available as different forms. Immediate release methylphenidate is short-acting. It is used for its flexibility in dosing and can be used to determine the correct level of dose during dose changes. Slow or modified release methylphenidate work for 8 – 12 hours and can be given once a day. They are more convenient, and as the child or young person need not take a dose in school, reduces stigma attached to this disorder.

Non stimulant medications by nature do not make people alert or active. However, in ADHD, they can improve symptoms of inattention and hyperactivity.  These include medications like atomoxetine.

Sometimes other medications may be used to help with problems with sleep and challenging behaviours that are associated with ADHD.

How do they work?

Medications act on certain chemicals in the brain called ‘noradrenaline’. They seem to affect the parts of the brain that control attention and organise our behaviour.

They do not cure ADHD. They help to control the symptoms of poor attention, overactivity or impulsivity.

Which medication will be used for my child?

Stimulant medication methylphenidate is usually prescribed first. The type of stimulant prescribed will depend on a number of things like the symptoms your child has, your choice of treatment, the ease of giving the medication and even availability/cost of the medication.

If methylphenidate causes unpleasant side-effects or does not work, other stimulant (dexamphetamine) or non stimulant medications may be prescribed. Sometimes a child may respond to a different form of methylphenidate.

How do I know it is working?

You will find that:

• your child’s concentration is better
• their feelings of restlessness or over-activity are less
• they control themselves better.

Sometimes school or teachers notice the improvement before you do.

What are the side-effects?

As with most medications, there may be some unwanted effects. However, not everyone gets side effects and most side effects are mild and disappear with continued use. Side effects are less likely if the dose is increased gradually when the tablets are started. Some parents worry about addiction, but there is no good evidence to suggest that this is a problem.

Some of the common side effects of methylphenidate include:

• loss of appetite
• difficulty falling asleep
• light headedness

Less common side effects to look out for include:

• being ‘over-focused’, quiet and staring- this may be a sign that the dose is too high
• anxiety, nervousness, irritability or tearfulness
• tummy pains or feeling sick
• headache, dizziness or drowsiness
• tics or twitches.

In the long term, sometimes growth slows down when children are on methylphenidate. Research shows that the total adult height may be reduced by 2.5 cm when on methylphenidate.

This list of side-effects is not exhaustive. If you notice anything unusual, it is important to contact your doctor immediately.

Is there anything I need to know before giving the medication?

Before you give any medication do tell your doctor about:

• allergies your child might have
• any other medicines they take, including vitamins or supplements
• for older girls if they are likely to become pregnant
• if you or anyone in your family suffers from physical health problems, especially high blood pressure, heart problems and repeated movements (called tics).

Are there any special tests before or while taking the medications?

Before taking the medication, your child should be physically checked up especially for their heart rate, blood pressure, growth and any other medical problems. Sometimes they may need blood test or heart tracing test to measure the electrical activity of the heart called an electrocardiogram (ECG).

While taking the medication, your doctor will monitor your child’s heart rate, blood pressure, weight and height on a regular basis along with checking for any side effects.

What do I need to know about giving the medication?

Some helpful things to know:

DO's

• Give the medication at the times you were told by your doctor or pharmacist
• Keep appointments for regular review of medication
• Store the medication safely
• Ensure your child swallows the medication, not chew or crush it
•  Make sure your child drinks enough, especially in hot weather and while exercising.

DON’T 's

• Double the dose if they miss a dose of medication
• Stop giving the medication without discussing with the doctor
• Give the medication to anyone else, even if you feel their difficulties are similar to your child’s.

How long do they need to be on the medication?

Most children and young people need the medication at least until they finish their education or schooling. A few might need to take it even when they grow up. Some children need medications only at specific times, like for example while attending school, and do not have to take it on weekends or on school holidays.

Your doctor would regularly check, at least once a year, if they need to continue the medicine.

Taking these medications can affect driving, and even certain careers like joining the army. It is important that the child is aware this and will need to discuss it with their doctor as they grow up.

Young people may need explanations and support as they grow up about taking their medication. Stopping medication can cause symptoms to return, and some young people can put themselves at risk in terms of their education, their work, and socially by being impulsive and taking alcohol or drugs.

Remember: if you have any further questions regarding this medication, do not hesitate to contact your doctor or pharmacist.

ADD Information and Support Services (ADDISS) - Provides information and resources about ADHD to anyone who needs assistance.

Young Minds -Parents’ helpline: 0800 018 2138: for any adult concerned about the emotions and behaviour of a child or young person.

ADD Resources - Website offers  free and carefully chosen articles helpful to adults with ADD/ADHD and to parents of children with ADD/ADHD, links to other ADHD-related websites, and more.

Electronic Medicines Compendium (eMC)

Contains information about UK licensed medicines.

Further reading

For parents/professionals

ADD/ADHD Behaviour change resource Kit: Ready-to-Use Strategies & Activities for Helping Children with Attention Deficit Disorder, Grad A Flick, Paperback, 1998,Jossey Bass Publishers, Wiley Print.

ADHD Handbook - For Parents and Professionals. Dr Alison Munden and Dr Jon Arcelis. Jessica Kingsley Publishers.1999

For children

Everything a child needs to know about ADHD (2006), Dr C R Yemula, ADDISS publications, 2007, second edition. For children aged 6-12 years

Putting on the Brakes: Young People’s Guide to Understanding Attention Deficit Hyperactivity Disorder.
For ages 8 – 12 . Author: Patricia O. Quinn, Judith M. Stern.

• National Institute for Health and Clinical Excellence: Attention deficit hyperactivity disorder (ADHD). Clinical Guideline (September 2008); Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults. 
• National Institute for Health and Clinical Excellence: Methylphenidate, atomoxetine and dexamfetamine for attention deficit hyperactivity disorder (ADHD) in children and adolescents: Technology Appraisal 98, 2009. 
• Pelsser LM, Frankena K, Toorman J, et al; Effects of a restricted elimination diet on the behaviour of children with Lancet. 2011 Feb 5;377(9764):494-503
• Rutter, M. & Taylor, E. (eds) (2008) 'Child and Adolescent Psychiatry' (5th edn). London: Blackwell.
• British National Formulary; 62th Edition (September 2011) British Medical Association and Royal Pharmaceutical Society of Great Britain, London.

Revised by the Royal College of Psychiatrists’ Child and Family Public Education Editorial Board.

Series Editor: Dr Vasu Balaguru

This leaflet reflects the best available evidence at the time of writing.

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