Engelska - What is autism?
Leo Kanner in the United States identified a number of children in 1943 who attended his clinic with a common, unusual pattern of behaviour he called childhood autism. But there are reports dating back to the early 19th century in which it can be assumed with the knowledge we have today that the child had autism. There is, for instance, a description of “The Wild Boy from Aveyron” by a French doctor. There are also reports of people with odd and distinctive patterns of behaviour or interests from the ancient world.
Autism is an invisible disability but causes great problems for the individual in everyday life and also for the individual’s family and close others. It is therefore important to identify people with autism as early as possible so that the individual’s family and people around learn what autism means and about how to respond to it and treat it.
Autistic syndrome
Autistic syndrome is a disability characterised by simultaneously having difficulties in the areas of social interaction and communication and problems with repetitive and rigid patterns of behaviour, interests and activities. To be diagnosed with autistic syndrome, the individual must have had these difficulties before the age of three. Autistic syndrome used to be called infantile autism.
Difficulties with social interaction
Difficulties in social interaction are manifested for example as difficulty in giving eye contact, and many individuals with autism avoid eye contact. People with autism find it difficult to communicate through body language and gestures. Their body language may be uniform and not adapted to the situation they are in. Another difficulty relates to sharing feelings such as joy or sorrow. This has the result that the person is regarded as distant. Nor do people with autism share their interests and activities with others. Their difficulties and inability to understand how others think and feel lead to children with autism finding it difficult to play with others of the same age and make friends. Adults find it difficult to establish relationships with other adults, mix with others and be sociable.
Difficulties with communication
People with autism have reduced ability to communicate and generally are late in developing speech or do not speak at all. Those who have functioning speech often find it difficult to initiate and/or maintain conversations with others and to adapt to the person they are talking to. Their speech may be repetitive or stereotyped, with word-for-word reproduction of phrases the person they are talking to has said or something they have heard earlier. People with autism have difficulty in adulthood with regard to mutual communication, even though they do speak. Some individuals may have spontaneous and well-developed speech yet find it difficult to understand and interpret what is said. Many people with autism need to learn how to communicate in ways other than speech, for example using pictures.
Difficulties with odd and repeated patterns of behaviour/interests
Certain things may take up the whole of the person’s interest: they may become fixed on irrelevant routines or rituals and/or motor mannerisms. Specific interests in children with autism may be fixation with objects that are shiny or that spin around. Many individuals with autism show self-stimulating forms of behaviour of various kinds, ranging from waving their hands in front of they eyes to putting their hands on things. Many of these interests and forms of behaviour take up so much time that they impede learning or other more appropriate ways of acting.
Related diagnoses and other common difficulties
Autism occurs in various degrees of severity. Mild autism is sometimes referred to as high-functioning autism and the term is often used synonymously with Asperger’s syndrome. An umbrella term for autistic syndrome and Asperger’s syndrome is autism spectrum disorder. Most people with autism also have intellectual disabilities. The proportion of people with autism who also have intellectual disabilities is estimated to be 70%. The level of intellectual disabilities can vary widely, from mild to severe. Children with autism have learning difficulties that are not solely related to intellectual disabilities. Learning difficulties often relate to inability to focus and maintain attention on things that have to be learnt. They find it difficult to learn spontaneously through imitation, that is to say to see what other people do and act accordingly. They also find it difficult to generalise, that is to say use what they have learnt in other situations and with different people than in the situation in which they have learnt something. People with autism are highly dependent on receiving confirmation from people around them that they are doing the right thing. Another common difficulty that exists together with autism is hyperactivity. The person have motor agitation, be constantly on the move and difficult to reach. Around a third of those who have autism also have epilepsy. Eating and sleeping disorders are also common. People with autism find it particularly difficult to see a context even though they may be good at grasping details. They find it difficult to grasp what they hear and often find it easier to take in what they can see. They may have difficulty interpreting from other senses such as touch, smell and taste.
Causes of autism
Autism is a disability considered to be due to biological disturbances to various brain functions. There is complete agreement today that autism is not an emotional disturbance that can be due to a child’s upbringing. According to current research, autism is to a great extent hereditary. Around two in every thousand children have the severe form of autism known as autistic syndrome.
Is there a cure?
Autism is a life-long disability. Although the degree of autism can be said to be variable, the consequences of having autism are always serious. The person can be helped to the most favourable development possible by early, intensive and adapted educational efforts in a specially arranged setting. One of the principal aims of treatment is to help the person to develop functioning communication. Information for and training of parents and others affected is an important part of the treatment. Those in the person’s environment need to receive training and guidance over a long period, perhaps for life, on the right way to deal with the person.
The significance of early detection/diagnosis
Parents often have a feeling early on that something is wrong because they notice that it is difficult to make contact with the child. With present-day methods it is possible to make a diagnosis from the age of around two years. Early detection makes it possible to make an early start on treatment with intensive training according to programmes devised to be appropriate and promote development for children with autism. There is agreement that the treatment should start as early as possible to prevent rigid patterns of behaviour arising which can then be difficult to break. An early start is also important as children are easier to work on at a younger age.
Living with autism
The need to take action for persons with autism varies depending on the degree of autism and intelligence. Those with high-functioning autism/Asperger’s syndrome may cope better independently or with a lower level of support, while those with intellectual disabilities and autism need life-long individually tailored support. The support may take various forms. Children with autism generally go to ordinary pre-school groups but need individually adapted content and a lot of support. Most children with autism attend a special school so that they have adapted teaching and a predictable social environment. Some children who are of normal intelligence can attend ordinary primary and lower secondary school with support. It is important to plan for the transition from childhood to adult hood. The need for structure and predictability does not disappear because the person becomes an adult. This means that adults need, for instance, adapted daily employment, various forms of housing support and adapted leisure activities.
A structured and carefully planned everyday existence is required for people with autism to be able have a good life and maintain attained and learnt aptitudes. This necessitates there being a well-trained network consisting of family members and professions who provide support. Persons with autism and intellectual disabilities can easily develop behavioural problems. To prevent problem behaviour arising, there is a need for a clear and structured everyday existence in which the way the person is dealt with is adapted using applied behavioural analysis.
Written by: Gunilla Bromark, Habilitation and Assistance Services in Uppsala
Factual material reviewed by: Anne-Liis von Knorring, Professor of Child and Adolescent Psychiatry at Uppsala University Hospital