Schizophrenia in children and adolescents

Schizophrenia is a disorder characterised by psychoses and disturbances of thoughts, feelings and senses. A psychosis is a notion that is not shared by others. This may, for example, be a notion that you are being watched, or that you can control other people through the power of thought.

Typical signs of schizophrenia can be hearing voices other people cannot hear, or seeing things other people cannot see. Other signs may be that you lack energy or have difficulty dealing with ordinary, daily tasks.

Schizophrenia may result in passivity, anxiety and depression. The disorder also often affects the way you are together with others. Schizophrenia may also make it difficult for some children and adolescents to attend school and work. Likewise, many find it difficult to have an active leisure life. 

There is no single explanation for why some children and adolescents become schizophrenic. Instead, many factors can influence whether you get schizophrenia. Today, schizophrenia is understood in terms of the stress vulnerability model. This means that some people are particularly vulnerable to strains and stresses. This puts them at greater risk of developing schizophrenia. You can read about this below.

Researchers have a theory that schizophrenia is linked to a large number of genes. You may therefore have been born with a vulnerability to the disease. The more vulnerable you are, the less it takes to trigger the disorder. 

Researchers estimate that approximately 7% of the world’s population have genes that entail increased vulnerability to schizophrenia. There is a greater risk of developing the disorder if someone in your immediate family has it.

Biological risk factors may also occur during pregnancy. They may, for example, occur, if, during pregnancy, the mother has:

• suffered from diabetes
• been poorly nourished
• had a serious infection.

If the birth process has been very difficult, this may also be of importance.

There may be many conditions throughout childhood and adolescence which may increase the risk of developing schizophrenia. This may, for example, be crises. Crises are a natural process in becoming an adult. Crises may, for example, involve reaching puberty, getting a boyfriend or girlfriend and a death in the family.

How a person is affected by them will depend on how they are handled by the person and his/her relatives. Can you, for example, reflect on the crisis and talk to those closest to you about what is difficult? Or are you expected to get over it quickly and is the experience ignored by family and friends?

Many social factors may affect the well-being of children and adolescents. This may, for example, be:

• Moving 
• Too great demands in a study programme
• Bullying 
• Parents’ divorce
• Abuse

The symptoms of schizophrenia may vary over time from person to person. In some children and adolescents, the symptoms disappear so that they can lead their lives in the same way as their peers. Others achieve a good life with pharmacological treatment. Some become ill periodically and need hospitalisation. Others will be affected by the disorder throughout their lives.

Symptoms of schizophrenia can be divided into several main categories:

Psychotic symptoms
Positive symptoms that were not previously present, but have subsequently occurred, such as hallucinations.

Loss of abilities
Abilities that you have previously had, but that have been lost, for example a lack of initiative.

Cognitive disturbances
Changes in thinking, for example concentration.

Basic symptoms
Change in self-awareness and awareness of others.

A hallucination is when the brain incorrectly perceives a sensory impression that is not present. It may happen for all senses: 

Sense of hearing
Many adolescents hear voices telling them to harm themselves.

Sense of taste
Things may, for example, taste rotten or of petrol.

Sense of sight
You can, for example, see people who are not actually there.

Sense of smell
For example, you may experience smelling toxic gas.

Sense of touch
You may, for example, experience that someone is touching you.

Delusions are notions that only make sense to the child or adolescent. It is not possible to convince the child or adolescent that the notion is wrong.

The most common delusions are paranoid delusions. If you suffer from such delusions, you feel watched and pursued. For example, you may feel that you are being pursued by the CIA because you have knowledge that they want.

You can also have self-referential delusions. This means that you are, for example, convinced that your mission is to save the world.

Moreover, some have delusions that their body has changed. Perhaps the person’s head is about to fall off, his or her organs are moving around his or her body, or his or her body is dissolving.

Many delusions are characterised by inverted logic. This means that everything reinforces the delusion. Any experience which would dispel the delusion for other people will serve as evidence to the afflicted person that the delusion is real. It may therefore be extremely difficult to change delusions.

The way a person with schizophrenia thinks and speaks may change, making it difficult for other people to follow. The person’s language may become less expressive, with words that only make sense to the person himself/herself. For example, words may be given new meaning or new words that do not exist may be created.

The language can be changed so much that others cannot understand what the person is saying at all. The person may also take what other people say very literally. For example, if somebody says, “I’m dying of laughter!”, he or she may take that to mean that the person is actually dying. 

Jumbled thoughts

Many adolescents suffering from schizophrenia experience jumbled thoughts. They affect the adolescent’s ability to function in everyday life. Some describe that they are completely drained of thoughts periodically. They may also have an experience that their thoughts do not feel like their own. Instead, it feels like they are inflicted on them from the outside, for example by aliens. Others describe a feeling that people can hear their thoughts if, for example, they get too close.

Movement disorders are also called catatonia. They previously occurred in a more severe form and more frequently than today. Some people would remain frozen in distorted postures for a very long time or lie in bed completely motionless.

Today, catatonic symptoms are less evident. However, many may feel that their movements have slowed down or that they have become physically more restless. Some have odd small movements. They may, for example, walk on their toes, caress themselves on the head in a certain way, or have constantly raised eyebrows.

Many experience a loss of previous abilities. You consequently cannot do the same as you could before. These losses can make it hard to conduct a normal everyday life, including that you lack an overview and energy.

In hospital, you hear your doctor use the words ‘negative symptoms’. This is just another term for loss of abilities. It is important to remember that these symptoms are not your personality. They are signs of illness. You are still the same as before you became ill. But you may, among other symptoms, experience:

Emotional blunting
You may experience that your feelings become less “strong”. For example, it may be difficult to feel real joy, sadness and anger.

Lack of initiative and passivity
You may have difficulties taking an initiative and getting started with tasks. Many people who suffer from schizophrenia have fewer interests and less energy.

“Reading” other people
You may have difficulty understanding and reading other people’s intentions and aims. For example, you can interpret silence as hostility or not understand that a friend wants to talk about a problem.

Isolation
You may start isolating yourself. Showing and feeling intimacy with other people may become difficult. For example, the idea of giving someone a hug may become unpleasant.

Doubt/ambivalence
Conflicting thoughts and emotions may occur, inhibiting action. One moment, you may want to go to the cinema – the next, the idea of going to the cinema will seem appalling.

It is important to remember that these symptoms are not a sign of laziness or an unwillingness to socialise. They are instead signs of illness.

75-80% of children and adolescents who suffer from schizophrenia have distinct disturbances of their cognitive functions. This means that they may have problems with the following:

Attention
They cannot concentrate for a long period at a time. For example, they may have problems going to school. They also become confused more easily.

Reaction time
For example, they may need longer time to perform tasks.

Problem solving
For example, they may find it difficult keeping track of their finances or planning a trip.

Memory
They may, for example, have problems learning new things, and may forget to keep appointments.

Basic symptoms
Basic symptoms are a number of symptoms involving changes in how the world or other people are perceived or in self-perception. The assurance we usually have in relation to who we are, who other people are and what the world is like may vanish.

You may be convinced that all other people are actors who are only out to deceive you. You can also experience that things change colour and appearance. Your sense of time may also change.

All these symptoms may make many things more difficult in everyday life. For example, it may become difficult to pursue an education, and it may become difficult to be with other people. Some may also find it difficult to meet basic needs such as food, sleep and hygiene.

The course of the disorder may be mild, or it may be severe and lifelong. The actual disorder phase starts with the onset of the first psychotic episode. For some, the disorder is still developing while they are receiving treatment under adolescent psychiatry services. This makes it difficult to predict the course of the disorder.

Research shows that approximately:

• 20% of those diagnosed with schizophrenia do not develop new psychoses. It may also be that the symptoms are so mild that they do not impact their everyday life overall. 
  
  
• 30% have recurring psychotic symptoms. But, with the help of treatment, they can cope with the demands of everyday life.
  
  
• 30% have multiple psychotic episodes without being symptom-free in between.
  
  
• 20% will have a psychosis that is constantly present, and the types of treatment available cannot improve their condition.

A person with schizophrenia may well have many psychotic symptoms and still be able to complete school or secondary education. However, the opposite may also be the case; that a person with schizophrenia who has only few symptoms may be unable to complete school and secondary education. This will depend on factors such as the effect of the medication and on how much the person’s cognitive functions have been affected.

Adolescents often state that, for example, they smoke hashish to calm their thoughts. However, schizophrenia and substance abuse do not go well together. Intoxicants aggravate the psychosis. Many adolescents report that they had their first psychotic experiences in connection with substance abuse. 

Abuse of alcohol by children and adolescents is very seldom encountered in child and adolescent psychiatry services. However, there is much reason to pay attention to the use of alcohol. Alcohol can make you more impulsive and amplify your emotions. Significant alcohol abuse combined with pharmacological treatment may cause liver damage, as the liver has to work double time breaking down both medication and alcohol.

Before the diagnosis of schizophrenia can be made, it must be ruled out that there is a physical cause of your symptoms. It may, for example, be epilepsy or abuse.

If you have had convulsions, concussions or the like before, you will therefore undergo a head scan at the first examinations.

The diagnosis is made by a specialist in psychiatry, and your symptoms must have lasted at least a month. The composition of the symptoms is also highly significant when making the diagnosis.

Diagnosis is your therapist’s working tool. It is used to find the best treatment for you. It is important to remember that you are not your diagnosis. It is a snapshot of your disorder.

Referred – now what?

If you are referred for examinations at the Section for Child and Adolescent Psychiatry, you will be invited to consultations with two therapists. These consultations are conducted at either the Adolescent Psychiatric Outpatient Clinic or in the OPUS specialist team. You can read more about OPUS here.

At the consultations, you will be asked about your symptoms. You must also describe how you experience your everyday life and the challenges it poses. Your parents contribute by describing your development and upbringing – from pregnancy to now.

It happens that an adolescent is referred for examination by the psychiatric services with suspicion of another psychiatric disorder than schizophrenia. This may, for example, be depression, anxiety or OCD. Therefore, it can sometimes be seen that the adolescent’s previous treatment has not had any effect. For example, because the cause was schizophrenia and not, for example, OCD. However, it is possible to have multiple mental disorders at the same time.

There are different types of schizophrenia:

Paranoid schizophrenia
In this type, the child or adolescent often feels persecuted, and hearing hallucinations are also often observed.

Hebephrenic schizophrenia
In this type, the behaviour has changed. Unpredictable mood swings and purposeless behaviour and/or speech are observed.

Catatonic schizophrenia
In this type, movement disorders are prevalent.

Undifferentiated (mixed) schizophrenia
In this type, traits from one or more of the other types are observed without being sufficient for one of these diagnoses. This diagnosis is often used when adolescents are diagnosed with schizophrenia. Over time, the symptoms may change and come to resemble one of the other types more closely.

Simple schizophrenia
In this type, no hallucinations, delusions, etc. are observed.  Instead, there is a slowly declining ability to cope with demands of society due to an impaired functional level. This is a very difficult and controversial diagnosis because so many other factors come into play.

The type of schizophrenia in question depends on the predominant symptoms.

Schizophrenia is a complex and serious disorder, but you may get well again. The sooner the treatment starts, the better the course of treatment is, and the lower the risk of recurrence.

In Central Denmark Region, one of the treatments that you may be offered is an intensive treatment course of two years. The goal of the treatment is to provide you with a course of milder, fewer and shorter episodes of illness and hospitalisations.

Once you have received your diagnosis, pharmacological treatment is often initiated. The medication is called antipsychotic medication.  The purpose of the medication is to alleviate or remove your hallucinations and delusions. In addition, the medication is used to dampen anxiety, agitation and aggressions.

The medication works by normalising the amounts of the neurotransmitters dopamine and serotonin in the brain. Research shows that these two neurotransmitters play a significant role in relation to schizophrenia.

The medication often helps to reduce psychotic symptoms. Unfortunately, it is often harder to reduce symptoms such as lack of initiative and overview with medication.

Cannot help everyone

It should be emphasised that medication cannot help everyone. Some will find that the medication has no effect. You may need to try out several types of medication before finding what works best for you. This may take some time, as it will often take several months before it can be determined whether the medication has an effect.

All pharmacological treatment may have side effects. Fortunately, not everyone experiences side effects. The various medicinal products may have different side effects. For example, you may become very tired or restless. Some also gain weight because they lose the ability to feel satiated.

Anyone who is being treated with antipsychotic medication must attend regular control visits. Some side effects are rare and are not felt right away. But they may become serious if undetected. At the control visit, blood samples will be taken from you and your weight and blood pressure will be measured. You also talk to a doctor about the effect and side effects of the medication.

To avoid recurrence, it is important that you continue with the pharmacological treatment agreed with your psychiatrist. Approximately 75% will experience recurrence within a year if they stop taking their medication. If you take your medication as agreed, the risk of recurrence is only 20%.

A rule of thumb is that the treatment needs to continue for 1-2 years after the first psychotic episode has passed. If there have been multiple psychotic episodes, it is recommended to continue the treatment for minimum 5 years after the last psychotic episode. Tapering off your medication needs to be done slowly and in consultation with the doctor.

Education about relevant matters in relation to mental illness is known as psychoeducation. Psychoeducation is often conducted in groups. Here you will acquire knowledge of symptoms, treatment and early warning signs together with your regular therapist. It is important to acquire this knowledge because schizophrenia is shrouded in a lot of myths. The psychoeducation is designed to increase your understanding of your disorder and help create realistic expectations about your future.

In Central Denmark Region, all adolescents with schizophrenia will be offered a two-year treatment course. Here you will be able to meet other adolescents with the same diagnosis. But there will also be adolescents with schizotypy and schizoaffective psychosis. You will also be assigned a regular therapist. In the start-up phase, you will be invited to a consultation with a doctor and a nurse. You will also be called in for a consultation with a social worker and for an examination by a physiotherapist.

Over the two years, you will be offered education about the disorder together with other adolescents. Your parents and/or close relatives will be offered education in groups with other relatives. You and your family will also be offered a 10-month course in a multi-family therapy group together with 6-8 other families.

There will be medication consultations at regular intervals. Blood tests and an ECG (electrocardiogram) are done in this connection. Blood pressure, heart rate, height and weight will also be measured. Any psychotic symptoms will also be assessed. You will also have a psychological examination done to establish your cognitive functional level. This may be important in relation to school and secondary education.

Network meetings will often be held. Social workers, school psychologists and education counsellors often participate in these meetings. Network meetings can help ensure that your needs for support are taken into consideration. This may, for example, be in relation to secondary education. The possibility of a place in a sheltered housing facility will also be discussed if this offers the best possible support for you and the family.

If you enter an acute psychotic phase, you may be admitted to a youth psychiatric ward. In Central Denmark Region, this will be in Herning or Skejby. You may also be hospitalised for changes in your medication.

For many, hospitalisation will be voluntary. But, for others, compulsory admission may be necessary. In the psychiatric system, compulsory admission may be used if the person is regarded as being a danger to himself/herself or to others. There are two levels of compulsory admission: yellow or red.

Yellow compulsory admission is often used by your own doctor if the doctor believes that you are a danger to yourself. The parents then have one week to encourage you to seek voluntary admission. Red compulsory admission is often used if an acute deterioration occurs. In connection with a red compulsory admission, a doctor and the police will make the decision on admission.

Once you have been hospitalised, you obviously have rights. If you are aged under 15, the doctors and your parents will together decide on your treatment (the Danish Act on Parental Responsibility). If you are aged over 15, the doctors can decide on your treatment (the Danish Psychiatric Care Act).

Read about children’s rights in psychiatry (0-14 years) here.

Read about adolescents’ rights in psychiatry (15-18 years) here.

The onset of schizophrenia may be very rapid. This means in the course of a few months. But the disorder may also have a prolonged course. It may be several years before the outbreak of the disorder. During that period, an increasing lack of well-being is often seen both socially and educationally. For example, you may find it difficult to keep up at school or isolate socially. This period is known as the prodromal phase.

The actual course of the disorder can be divided into three phases:

The acute phase
A phase characterised by anxiety, chaos and psychotic symptoms.

The stabilisation phase
Once treatment has been commenced, the stabilisation phase is initiated. You start to regain some social functions. At the same time, you need to recognise that you have a disorder and learn to live with it.

The maintenance phase
In this phase, work must be done to maintain the good results achieved.

Recurrence

Unfortunately, some people experience a recurrence of the disorder. In case of a recurrence, you again end up in the acute phase. Most recurrences are caused by the person:

• having stopped taking his or her medication
• experiencing a great strain
• starting substance abuse.

Recovery

It is important to continue treatment. It helps prevent psychoses. If you have a recurrence, your treatment will often take longer and there is a risk that you will not recover completely. 

The term ‘recovery’ is being increasingly used. Recovery means healing as a result of understanding you acquire about your disorder. It is not necessarily a goal that you get completely rid of your symptoms. Instead, you must learn how to tackle them so that they make themselves felt as little as possible in your daily life. It is important to remember that your quality of life and functional level do not necessarily go hand in hand. You may very well have a good life even if your functional level may not be as high as if you were well.

Learn about your disorder

It is important to learn about your symptoms and how to deal with them. All adolescents who are diagnosed with schizophrenia are offered education about their disorder. 

Be aware of your early signs

You can help prevent a recurrence (a new psychotic episode) yourself by being aware of the early signs of a psychosis. The signs are personal. This means they are different from person to person.

Early signs could be that, in the run-up to a psychotic episode, you become more irritable, you isolate yourself more, sleep less and become more sad. It may feel very difficult having to recall how you felt in the period up to the onset of a psychosis. But, together with your therapist, you can fill in forms in which the symptoms are described. These forms may help you remember what preceded the psychotic episode.

Make an agreement with your relatives

It is a good idea for you, your parents and other closest relatives to make an agreement on who you should talk to if you become aware of signs of a recurrence. It is also important for your parents and other relatives to know what your personal signs are if you are at risk of having a recurrence. Some adolescents do not want their parents to be informed, and they do not wish their parents to know their symptoms. If that is the case, it is important to have other people you can trust.

Make a note of what benefits you when you are feeling bad

You can write down the things you do that benefits you when you are feeling bad. This may, for example, be spending time with other people, being alone, going for a walk or watching a film. You can use flash cards or your calendar or mobile phone so that you can always have these notes with you.

Comply with your pharmacological treatment

It is important to comply with your pharmacological treatment for as long as your therapist recommends it. If you have any doubts or reservations about your medication, it is a good idea to talk to your therapist. 

Make sure to sleep well and eat a healthy diet

It is important that you have a stable daily rhythm with regular sleep and that you remember your meals. When you do not feel you can cope with very much, you might also be more easily tempted to eat fast food, but it is important to have healthy eating habits.

Exercise and do other activities that interest you
This could help alleviate negative thoughts and reduce stress and discomfort. 

Avoid excessive quantities of alcohol

It can prevent your treatment from working and increase the risk of more symptoms. High alcohol consumption combined with medication may cause liver damage in the long term. 

Include breaks and rest in your everyday routine

It is a great idea to organise your routine so that there is also room for breaks or for leisure activities and other positive experiences.

It is important to prevent any recurrence of the disorder – especially as research has shown that the more recurrences a person has, the more difficult it is to recover. 

Several things can be done do prevent recurrence:

Cut down on expectations and meet the adolescent on his or her own terms
It is important to reduce the pressure on the adolescent, who often has enough to do in dealing with his or her disorder.

Create structure and routines in everyday life
The structure may be more or less detailed depending on the adolescent’s needs. It is reassuring to know what is supposed to be happening and when so that you can prepare.

Make sure that the adolescent has the opportunity to relax
Create an everyday life without too much stress and with included breaks.

Provide opportunity to be alone
It takes a lot of energy for an adolescent suffering from schizophrenia to attend things, be present and act on an equal footing with others.

Prioritise pharmacological treatment
In Central Denmark Region, antipsychotic medication is provided free of charge for the first two years. This is done to ensure that the adolescent’s finances do not prevent treatment.

Sheltered housing may be preventive

Getting a place in a sheltered housing facility for psychiatric care can also be a preventive measure. It may be a frightening thought for many because it raises questions about our mutual relationships. Both adolescents and parents may start wondering whether they have done something wrong.

Sheltered housing can provide support for both parties when being together is too hard. Both parents and children may have a lot of thoughts about blame and shame in relation to the disorder, and this can be a problem if they show misplaced considerations for each other. For example, the adolescent may find it hard to live at home, but chooses not to say anything so as not to upset his/her parents.

In a sheltered housing facility, both the adolescent and the parents will receive advice and guidance about being together. The adolescent will also receive assistance in retraining lost abilities to the extent possible. Many sheltered housing facilities also offer schooling and everyday activities.

Family involvement

With information and knowledge about the disorder, the family can help ensure tranquillity in the adolescent’s life. This can prevent recurrence. The family can learn about how to communicate with the adolescent to avoid misunderstandings, and it will be easier to talk about difficult issues. It may be that the parents need help in not becoming excessively involved in the disorder.

They may also need help with how to cope with the things their child says if he or she is in a psychotic state. Many parents are unsure about what to say to their child if he or she tells them about hearing voices or having other hallucinations.

Involving the network is also important. This applies to relatives and to school or secondary education institution. Demands on the adolescent, for example at school, must be adjusted to take any relevant considerations into account. This may, for example, be to submit an application for a personal mentor to advise and offer guidance about educational challenges.

Relatives are extremely important in the course of treatment. There is scientific documentation that the involvement of relatives is of great importance to the prognosis and that the course of the disease becomes easier. It is important for relatives to take care of themselves first of all. You cannot help others unless you are in a good state yourself. 

There is no doubt that it is extremely challenging to be a parent of a sick child. Many emotions are involved, such as sorrow, anxiety and powerlessness. It can be hard to stand next to and watch your child going through a hard time. At the same time, some parents feel that help is missing or arrives very late. As a parent, you may well have other children to look after, and a job to hold down.

Parents may be burdened to such an extent that they develop depression. Parents and relatives can get help from their own doctor, who can make a referral to a psychologist for counselling via the health insurance. They can also contact patient and carer associations such as SIND (the Danish Association for Mental Health) or Bedre Psykiatri. These associations frequently hold courses on specific disorders, and they generally offer advice and counselling.

If the adolescent consents, parents and other relatives will often be able to obtain specific advice and guidance from the psychotherapist on how best to support the young person in his or her everyday life. Joint consultations can be arranged between the therapist, the adolescent and the relatives. 

It is important to remember that siblings are also relatives. There are various options available for siblings, e.g. via SIND and the psychiatric services. In adolescent psychiatry, siblings sometimes participate in psychoeducation, alongside their parents and perhaps grandparents, if they are old enough to receive and understand the same education as their parents. With the consent of the schizophrenic adolescent, siblings may also be offered some clarifying counselling sessions with the regular therapist.

Support the treatment

• Seek out knowledge about the disorder. The more you know, the better you will be able to help.
• Support the treatment and the therapist. If there is anything you do not understand, ask.
• Leave some space; let go. It can be difficult to dare let go and trust that others will be able to help your child properly. But it is important to ‘normalise’ your relationship and hand over the helper’s role to the therapist and other professionals. This will give both you and your child some space away from the disorder.
• Focus on the areas where you can make a difference, and accept that you cannot solve every problem.
• Keep an eye on warning signs

Be patient

• Solve the problems step by step, with gradual changes
• Lower your expectations.
• Rome was not built in a day! Change takes time, and patience is important.

Maintain hope

• Make an agreement with your child that you may contact the therapist if symptoms of the disorder occur.
• Remember: schizophrenia is nobody’s fault! Self-reproach or recriminations against others will not change anything. Instead, look ahead.
  Hold on to hope – Help your child to believe that he or she will get better.
• Support your child. Express your own views and feelings instead of criticising. Remember also to praise and support your child for persisting with the treatment.

Remember: Many people with schizophrenia have little or no awareness that they are ill. During these periods, it is important not to try to convince your child of the opposite. You should instead support continued contact with the therapist.

• Familiarise yourself with the disorder; seek out knowledge.
• Participate in educational programmes or seminars for relatives where you can share with other relatives of people with schizophrenia.
• Avoid over-involvement. It is important to respect each another as independent individuals and to avoid overstepping your child’s personal boundaries.
• Accept that you do not always have the energy to provide as much help as might be needed – we all have a limit to what we can manage.
• Remember to look after yourself. Give yourself time and permission to find some places or activities where, as a relative, you can ‘recharge your batteries’ and get new energy.