Intellectual disability – developmental disorder

Having an intellectual disability means having difficulty understanding and learning certain things. Intellectual disability affects your entire life, but good routines and sometimes aids can make everyday life easier.

An intellectual disability may be due to many different things. It is quite common to have epilepsy ,  CP (cerebral palsy)  or other disabilities, such as autism  or vision impairment , at the same time as the intellectual disability . It is also common with heart problems, depression , sleep disorders , eating disorders and obesity .

Intellectual impairment is also called developmental impairment or cognitive impairment.

What is intellectual disability?

An intellectual disability means that a child has impaired intelligence, and also poorer ability in at least two of the following three areas:

  • Theoretical ability, that is, how they can read, write, count and other things that are trained in school.
  • Social ability, for example how they can socialize with others.
  • Practical ability, how to handle activities in daily life such as eating, washing and dressing.

Three levels of intellectual disability as an adult

A slight intellectual disability means that you can do most things yourself, but need help with some practical things, such as managing your finances.

In the case of a moderate intellectual disability, one can usually speak and understand things that are simple and connected with everyday life. You need support from people who make sure you are well and help with for example food, clothing, times and finances.

If you have a severe intellectual disability you cannot speak, but show what you feel and what you want with your body, voice and facial expression. You need help from people you know to be understood.

Intellectual disability is not a disease

Intellectual impairment means that it is difficult to think abstractly, that is, the ability to make calculations in the mind and think of consequences. It takes longer to learn and to understand different things. However, there is the same need for security and love, but sometimes a different way of expressing their feelings.

Training and opportunities to gain new experiences and experiences mean that anyone with an intellectual disability can improve what they can and how they can be involved in different areas.

Intellectual disability is not a physical or mental illness. It cannot be cured, but you can compensate for the disability with good routines and sometimes with aids.

Down syndrome

There are many different causes of intellectual impairment, such as chromosome abnormalities. The most common and well-known chromosome abnormality that leads to intellectual disability is Down syndrome. Those with Down syndrome often have a mild or moderate intellectual disability. There are some features in the appearance that show you have Down syndrome, but they can vary from person to person.

If you have Down syndrome, other organs and systems in the body are also usually affected. It is quite common to have heart failure, visual impairment, hearing loss, and one can be sensitive to infections. Congenital heart defects are usually operated on early.

How common is it to have an intellectual disability?

About one person in a hundred has an intellectual disability. About one third of them have moderate or severe intellectual disabilities.

There are several methods for measuring a person’s intelligence, which is measured in so-called intelligence quota. An average value is set at 100 for the entire population. Mild intellectual disability has an intelligence ratio of 50-69. Moderate or severe intellectual impairment has an intelligence ratio lower than 50.

When should I seek care?

You should turn to the childcare center, BVC, if you have a child who is late with, for example, sitting, crawling and walking, talking or understanding what it is you want. The child may then meet a nurse who does an initial examination. If there is a need, the child may see a doctor and psychologist.

Following the surveys, the child health care system suggests how the investigation should proceed. It may look different in different parts of the country. The child may need a medical diagnosis, which is done at a pediatrician, pediatric medical clinic or at child and adolescent psychiatry, bup. The child and adolescent rehabilitation should then provide advice, support and treatment to children and young people with disabilities and to their families.

Children of school age, from six to seven years

If the child has difficulty meeting the requirements of the school, you can contact the student health at the child’s school. The school has access to a doctor, psychologist, curator and special educator who can examine the child. Following the surveys, student health suggests how the investigation should proceed.

What is the reason for intellectual disability?

An intellectual disability can occur for many different reasons. The extent of the disability depends on what is the cause, or how large the brain damage is and where in the brain it is located. Many times it is not possible to determine what has caused an intellectual disability, but here are some reasons:

Heredity

Some damage to different genes can result in an intellectual disability. In so-called recessive heredity, a person can have damage to genes without showing it to him or her. If both parents have this predisposition and the child therefore receives the damaged gene in duplicate, it leads to various diseases that can cause a disability.

The so-called Fragil X syndrome is a hereditary cause of intellectual disability. The syndrome is caused by a change in an inheritance in the X chromosome and it is usually boys who get the disability.

Causes during fetal time

In the fetal stage, damage sometimes occurs in cell division, and some or all cells may have too many or too few chromosomes. Down syndrome is the most common chromosome abnormality leading to intellectual disability. Children who are diagnosed with Down syndrome have a chromosome too much, chromosome 21. Down syndrome is rarely hereditary.

New research has also shown that so-called gene mutations, that is to say, pathological changes in the hereditary lineage, can occur during pregnancy. They can cause, above all, severe intellectual disabilities. These gene mutations are not hereditary.

Pregnancy and drinking alcohol can damage the fetus and the development of the fetal brain. It can lead to an intellectual disability or difficult learning problems. Some medications and drugs can also cause harm to the fetus.

Other causes of brain damage during the fetal period that can lead to intellectual disability are if the mother gets a more unusual infection, such as rubella. If the fetus gets a blood clot or bleeding in the brain, or is damaged by too little nutrition from the placenta, it can also lead to intellectual disability.

Damage during and after childbirth

The birth and problems that occur in the immediate aftermath of birth can cause the child to have a brain injury. Examples of this are lack of oxygen before or during childbirth due to problems with the placenta or umbilical cord.

Starvation and under-stimulation

In poor and underdeveloped countries, children who are malnourished and lack of iodine have brain damage that increases the risk of intellectual disability. There is also a risk if a child does not receive the medical care or mental stimulation they need.

How can intellectual disabilities turn out?

Intellectual impairment is usually divided into mild, moderate and difficult. A slight intellectual disability is sometimes not noticeable until the school age when higher demands are placed on the children. In a child with moderate or severe intellectual disability, it is evident already during infancy and affects the child’s entire development. If the child has a severe intellectual disability, they often have several disabilities. A severe intellectual disability in combination with a severe disability is usually called a multi-disability.

A child with intellectual disability alone can develop in a similar way to other children in a variety of areas, such as mobility, thinking, language, ability to express emotion and social ability. But development is slower and does not reach as far as most other children.

The differences between a child with intellectual disabilities and a child who develops as usual increases with age. A child with intellectual disability has the same needs and feelings as others, but often expresses himself differently, for example, more directly or more slowly. The child is often dependent on direct experiences to understand. This means that the child needs to experience things in concrete terms and needs special training to learn certain things. For example, if the child receives a clear picture material as an explanation, it usually helps a lot. The child also needs a lot of support and encouragement from adults.

Investigations and investigations

As a parent or guardian, you may describe the child’s development in various areas and any difficulties the child has. You can get questions about, for example, pregnancy, infant years, language development, and the ability for mutual social interaction and communication. You can also get questions if the child has always needed a long time to learn things.

The child undergoes tests

The child may undergo various tests and do tasks together with a psychologist. It is a way to find out what the child is good at and what is difficult for them to manage. As psychologists go through the test results, they look at whether the child has difficulty learning and understanding various things that other equally old children can. They also look at whether the child has difficulty coping with things at home and how they play with ever-old children.

The child may also meet a doctor who does a medical examination in which possible causes of intellectual disability are investigated. The doctor also examines whether the child has other illnesses or disabilities, such as CP , autism , epilepsy or visual impairment. Based on this examination, the child can sometimes be called for a medical examination with, for example, magnetic camera examination of the brain, chromosome analysis, metabolism tests or EEG, electroencephalography . The last mentioned examination is done if the doctor suspects that the child has epilepsy.

The psychologist or doctor makes the diagnosis of intellectual disability based on the tests, the interviews and the medical examination.

Children who have already been diagnosed

If the child has already been diagnosed with intellectual disability or a diagnosis, such as chromosomal abnormality, which always leads to intellectual disability, they will be referred to the county council’s child and youth rehabilitation.

To be informed about intellectual disability

When you find out that a child has an intellectual disability, it can be both a relief and a grief. A relief because you are told what is wrong and a sadness that the child’s problems are due to a disability.

A message about intellectual disability affects your entire life. Many parents and family members can initially react with strong feelings and commute between hope and despair.

Gradually, family and close relatives usually develop an understanding of what intellectual disability means and how it will affect the life of the child and family. There are books and web forums about what it is like to live with children who have intellectual disabilities. They can make it easier to understand and cope with a life with disabilities. There are also patient associations where you can meet other people in the same situation as yourself.

Down syndrome is diagnosed early

Children born with Down syndrome or other types of chromosome abnormalities are often diagnosed directly on BB. To be completely sure of the diagnosis, a blood test is taken to see what kind of chromosome abnormality the child has. Down syndrome has a chromosome too much.

Diagnosis may come late

Children are so different that it can sometimes be difficult to suspect intellectual disability. This means that it can take time for the outside world to react when it comes to children who have a moderate or mild intellectual disability. Occasionally, parents and other adults understand that it is an intellectual disability only when the child is in his teens. 

Important to get diagnosed

If you have a child with late development, it is important for the child to undergo an investigation. A child who is diagnosed with intellectual disability may have his or her specific needs met and be properly addressed. Then it can also be avoided that demands are made that the child is unable to live up to.

Training and support

Because an intellectual disability can look many different ways, it can be difficult for parents and other relatives to know what requirements can be made and what the treatment should look like. Much is about accepting the child that they are.

A person with an intellectual disability may to a different degree need the support of the family to be able to work and have a leisure time with friends and interests. Parents or guardians are also needed as the child grows older, but the role of parents changes. Parents are usually the most important people when it comes to guiding the child towards as independent life as possible.

Practice interaction and language

Children with intellectual disabilities do not have the same conditions to develop language and interaction skills as other children. They often have a delayed or deviant language development. It is therefore important that there is early support for stimulating the interaction between the child and the people nearby. It happens best in play and in everyday care. The adults need support in learning the child’s signals. They may also need help arranging the game to support the child’s ability to interact.

AKK – signs, objects and pictures

Research shows that early efforts to stimulate interaction, language and speech are important for children with intellectual disabilities. An example of such an effort is the use of AKK, alternatives and supplementary communication. AKK is a collective name for efforts that are intended to improve a person’s ability to communicate.

AKK means that the people around the child learn to use signs as they do with their hands, and to show pictures and objects while talking to the child. In the beginning, it stimulates the child’s ability to perceive and understand that one can communicate. Later AKK helps the child to express wishes, thoughts and feelings. AKK gives the child the opportunity to express himself before the speech starts, if the speech does not start or if the speech is not enough to make himself understood.

As the child develops, learns new things and stays in new environments, AKK needs to be adapted to the child’s needs.

AKK speeds up language and speech development and it is therefore good to start using it as early as possible.

Exercise of muscles and movements

Some children with intellectual disabilities develop motor later and to some extent different from children in general. This means, for example, that many children learn to crawl and walk later than children without disabilities. This means that you as a parent and staff around the child may need advice on how to stimulate the child to develop.

There may also be a need for special tools, such as a tricycle for the child to learn to ride a bicycle. It is also important that the child or the teen find activities that provide joy of movement and contribute to active leisure time.

Straight and clear communication

Children with intellectual disabilities need concrete instructions and instructions. Therefore, it is good to be straight, simple and unambiguous when talking to your child. You do not need to explain too much, but make sure the child listens and gives brief prompts step by step.

As a parent, you can help the child by, for example, putting words into things, explaining context, helping it to focus and taking one thing at a time. In this way, you help the child to structure and organize the information that might otherwise be difficult to manage. A child who has an intellectual disability can sometimes understand and remember more easily when they get comics or written stories, so-called social stories.

Train to manage yourself

The training gradually becomes more focused on the child becoming independent and coping with different everyday activities on his own. For example, the child can practice dressing and taking care of himself, eating and caring for his personal hygiene.

As a parent, you may need guidance and advice to best support and teach the child to become as independent as possible.

To let go

Most parents worry about their children when they are young and are growing up. One way to reduce the anxiety may be to meet other parents in a similar situation or to seek professional help, for example in the field of habilitation.

As a parent of a child with intellectual disability, you need to be with and support for a long time. It is important that you eventually try to let go and dare to trust that others can help the adult child well enough to one day be able to move away from home.

To go to school

Children in preschool or school who need special support due to a disability are entitled to receive it. Children with intellectual disabilities usually join a regular preschool group and may have extra support from a resource person.

When children with intellectual disabilities reach school age, they usually attend primary school to receive adapted education in a safe social environment. The primary school also has an orientation called training school for students who are unable to reach the goals of the primary school. Some children with intellectual disabilities can also attend regular elementary school.

Parents are involved in planning

As a parent or guardian, you together with school staff plan what school the child should attend. Children who need special support have the right to receive a so-called action program. As a parent, you can participate in the planning of how the child’s preschool stay or schooling should be organized, and it is good to meet with the teachers regularly to follow and develop the program.

Preschool

In preschool, almost all children with intellectual disabilities go into a regular group of children. The preschool sometimes has an extra resource in the group to provide support and assistance to children with intellectual disabilities.

Most children do a great deal of their training at preschool, both individually and in groups. The other children in preschool become role models for learning and play. Preschool staff may need training and guidance to understand the special needs of a child with intellectual disabilities.

School

Many children with intellectual disabilities find it difficult to meet all the demands made at school. This may include listening to and understanding instructions given in groups, working independently, getting ready on time and keeping track of things. In primary school the teaching is more adapted to each student, it is not as urgent as in primary school. There is then a high school special school for four years with the possibility of different orientations according to conditions and wishes.

If a child with intellectual disability starts in primary school, there is so-called individual integration, which means that the child attends a regular primary school class but follows the primary school curriculum.

Life as an adult

In adolescence, most young people tend to free themselves from parents and become more independent. If you have an intellectual disability, you are more dependent on your parents. Therefore, you often start the liberation process later, and it may be longer than usual for other young people. Many times it also takes longer for parents to let go. Dependence and care can be difficult to break for you, but also for your parent.

Sex and cohabitation

As a youth or young adult with intellectual disabilities, you need and have the right to sex and cohabitation information just like any other youth. If you have an intellectual disability, you may need individual counseling tailored to the disability. For example, you need information about protection against sexually transmitted diseases and unwanted pregnancy. It can also be important to learn how to avoid situations where you risk being exploited by others.

Own interests and friends

To become more independent, it is important to have your own interests and friends. If you have an intellectual disability, it may be difficult to meet other young people at leisure. It may be that you are not so good at planning and going to different places where you can meet friends.

When you quit school, you no longer meet friends every day, and you may need support to stay in touch with friends and find new friends. You may also need support to find activities when you are free.

You have the right to support

If you have a mild intellectual disability, you can live in your own apartment. You can read texts written in a simple language. You understand money but can still have a hard time figuring out what to do. You can handle a lot yourself, but you need some help. Personalized support, aids and accessible environment, that is, it is adapted so that you can participate in ordinary everyday activities, is important for you to be able to have as active and independent life as possible. The need for support varies from person to person. Some may manage themselves, or require relatively little support. However, if you have a moderate or severe intellectual disability, you may need a personalized support for the rest of your life.

If you have an intellectual disability, you have the right to receive support from the municipality and county councils. You can ask an officer within the municipality or county council for information.

Tools for memory

If you have an intellectual disability, you may have trouble remembering things and need to be reminded often. Reminder files, schedule, reminder clocks or the like are examples of aids. The occupational therapists in habilitation have good knowledge of such aids.

On the pages about assistive devices you can read about how it is possible to get aids, and find out which ones are available where you live.

If you have an intellectual disability, you need order and structure in your everyday life. You may need support and assistance with various things such as keeping times and understanding text, money and imagery. It can be good to plan and prepare what you need to do on the days. Unpredictable and unstructured situations can create unnecessary stress and confusion. With good routines that are the same from day to day, everyday life becomes easier. Often it helps to have a clear schedule for the day or week in which activities and times are entered. The schedule can also be displayed with pictures. It is an advantage if it is set up so that it is clearly visible, or included during the day.

Prepare changes and difficult tasks

Moving from one activity to another can cause concern. Therefore, it may be good to prepare yourself for a while before what happens. For example, if you are going to go shopping, you can make a plan to stick with instructions for what to do when you get to the store.

Housing support

If you have a mild or moderate intellectual disability, you can often move away from home and live in a group home or in your own home. If you need help and support in the home, so-called housing support, you should contact the municipality. The needs may vary. You may be able to live in your own apartment but need help with different things one or a few times a week. If you have a greater need for support, there are, for example, group housing and service accommodation where you live in your own apartment but where there are staff in the same house that you can get support from.

You have the right to daily employment. The municipality will offer work for people with intellectual disabilities. The duties must be adapted to the person’s interest, ability and knowledge. It can mean everything from easier employment at a day care center to a so-called protected job.

Driving license

Few people with mild intellectual disabilities have a driving license. A large number of those who have taken a driving license have studied at one of the six upper secondary schools in the country where traffic education is included. Having a driver’s license can have a great impact on social development and self-confidence, especially if you live in rural areas. The SRA wants it to be a more individually tailored driver’s license education, which you can take advantage of if you have an intellectual disability.

Being related

Since an intellectual disability can be in many different ways, it can take time for parents and other relatives to learn what requirements can be set and how the child should be met. Much is about accepting the child that they are.

Knowledge about the disability

As a relative of a child with intellectual disability, it is good to provide you with as much information as you can about the disability. But above all, you should try to understand how the child works. You can try out together with the child and see what works. Try not to compare with peers and siblings, based instead on what the child can do. Increase the requirements in small steps as the child can handle a task.

Changes can cause concern

Sometimes it may take some time before you realize and surely know that your child has an intellectual disability. You have probably already understood that the child needs to be treated in a special way to understand and keep up. Many parents can be relieved and see the diagnosis as a confirmation. At the same time, you may feel anxious, for example, how the child will be doing in the future. It is common for you to have periods when everything feels calm while you can sometimes become extra anxious, for example when the child should change school or move away from home. Then you may need to talk to someone who in their profession comes in contact with these questions about how you can support your child.

Comrades and siblings

Many children with intellectual disabilities find it difficult to play and be with other children and siblings. This may be because they do not have the conditions necessary to be with a friend, such as the ability to show interest in the other, to listen and to pay attention, or to understand and follow rules. As a parent, you may need to help the child to make contact with others, to take the initiative and invite them home or accompany them to their friends. Siblings can sometimes feel neglected and it can be important that you as a parent sometimes do things only with them. You can also try to invest in things that both the child with intellectual disabilities and the siblings can participate in.

Parents and family may need support

If you are related to a child with intellectual disability, it is important that you do not request too much of yourself. As a parent, you need time for yourself and the rest of the family. It is possible to get support for your own part. A short-term home where the child can stay regularly together with other children can give all family members the opportunity for their own activities. It can be positive for both parents and children.

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