Autism

Autism is caused by a developmental disorder in the brain and can vary widely between individuals. For a long time, experts classified autism into a number of different forms, such as early childhood autism, Asperger’s syndrome and atypical autism. However, as these cannot always be clearly differentiated from one another, the term “autism spectrum disorder” (ASD) is becoming increasingly common. It is often also referred to as “autism spectrum” for short.

People with autism perceive the world in their own unique way. They find it more difficult than others to understand the feelings and needs of other people and to express their own thoughts and feelings. This makes it more difficult for them to form relationships with others. However, with the right support, they can enjoy life and participate in society. 

Every autistic person is unique – some can take care of themselves and live independently, even if they need support in some areas of life. However, many have more severe impairments, giving rise to high support needs. 

The autism spectrum is very wide-ranging. Autism is characterized by three key features:

• Problems with social interaction
• Communication and language difficulties
• Repetitive (stereotyped) patterns of behavior

Problems with social interaction

Autistic people often appear distant or to be “in their own world” and tend to make less eye contact. Some can be very sociable but, to the outside observer, often behave in unusual ways when interacting with others. This is because autistic people find it difficult to understand how others are thinking and feeling. This makes it more difficult to get along with other people and build relationships. They tend to misconstrue the subtleties of communication and struggle with ambiguity and irony. They can react in usual ways in many social situations – for example, by failing to respond to emotions expressed by others.

Communication difficulties

Some autistic people learn to talk later and have limited speaking skills or may not talk to other people at all. They also use fewer gestures when communicating. They may speak in a monotone voice. Some constantly repeat the same words and phrases or repeat what they hear other people saying. Others speak very precisely and formally.

Stereotyped, repetitive behaviors

People with autism tend to constantly repeat some behaviors, such as flapping their arms or always do things in a very specific way or sequence. They often have limited or unusual interests, which become very intense.

They tend to find it more difficult to be flexible and spontaneous. Routines and predictable schedules are very important to them. In addition, they may sometimes be either very sensitive or insensitive to external stimuli such as noises, smells or touch.

Along with the features mentioned above, people with autism spectrum disorders may have a range of other impairments.

Examples include:

• sleep disorders
• eating disorders
• anxiety or obsessive-compulsive disorders
• tic disorders
• attention-deficit/hyperactivity disorder (ADHD) 
• epilepsy 
• depression

Challenging behavior may also occur – such as self-harm, outbursts of anger and aggression. This usually indicates that the person is feeling overwhelmed or misunderstood. 

Around half of all people with autism have an intellectual disability. The remaining half have normal to high intelligence, with a small number being gifted.

People are born with autism, which is a developmental disorder of the brain. The precise causes of autism are still unexplained. However, there are several known factors that can increase the risk of an autism spectrum disorder.

Genetic (i.e. hereditary) factors and certain events during pregnancy increase the risk of a person developing an autism spectrum disorder.

Hereditary factors

Genetic predisposition plays a strong role in autism. Parents with autism are more likely to have autistic children. If parents already have one child with autism, the probability of a second child being autistic is also increased to between 10 and 20 percent on average. The individual risk depends on genetic triggers. The likelihood of a child being born with autism increases with the age of the mother and father. The main reason for this is that genetic mutations are more likely to occur in older parents.

Factors during pregnancy

Complications during pregnancy may play a role. In particular, these include an infection with rubella viruses or premature birth. The risk is also increased if a pregnant woman takes certain medications for treating epilepsy (in particular those containing the active ingredient valproate).

In Germany, around 1 percent of the population has an autism spectrum disorder. Autism occurs twice as frequently in boys and men than in girls and women. 

The number of people diagnosed with autism has significantly increased over recent decades. The main reason for this is that people are now being diagnosed earlier. It remains unclear whether autism is in fact becoming more prevalent.

People normally have autism for life. However, the way it progresses can vary considerably. The typical symptoms often decrease or change over the course of a year. Individual features may intensify temporarily or on a continuous basis. However, many children and adolescents gradually learn to communicate more effectively and to get along with other people.

Indicators of autism are sometimes present at a very early age of 1 or 2 years. In contrast, some people live with autism for years or even decades without it being detected. 

Early signs of autism can sometimes gradually disappear as the child grows or it may be discovered that the symptoms have a different cause. This applies in particular to children who show less obvious signs of autism. It is also possible for a child to develop normally in the first few years of life and only show typical signs of autism at a later stage.

Many autistic people require intensive support throughout their lives. Some can lead an independent life, pursue a career and raise a family. However, they may sometimes need help with some of life’s daily challenges. Over time, many people learn to manage their autism more effectively. 

When a child behaves in an unusual way, this can be very unsettling for parents. In this situation, the first port of call should be a pediatric practice. This is also something that can be discussed as part of the regular U check-ups. The pediatrician will make a referral to a specialist if necessary. Adults can begin by consulting their family doctor. Another option is to go directly to a psychotherapeutic or psychiatric practice.

Autism can only be diagnosed by a doctor specializing in psychiatry and psychology or by a psychotherapist. Children and adolescents should be diagnosed by a professional who specializes in this age group. The diagnostic process itself is very comprehensive and time-consuming, as it is important to examine each case very closely and exclude other possible causes.

Diagnosis involves the following:

• Interviews with the child and parents
• Detailed questionnaires completed by parents
• Observations of the child’s behavior when interacting with others or playing
• Developmental tests, especially tests of intelligence and language capabilities 
• Medical tests

Several appointments will be needed to complete the process. Often, the child’s development is observed for a certain period of time before a diagnosis is made. Children can be diagnosed from the age of 1. However, the age at which a reliable diagnosis is possible depends on factors such as how obvious the indicators are and how they develop over time.

The process for diagnosing autism in adults is similarly very comprehensive. In most cases, it is more difficult to diagnose in adults because the symptoms are often less obvious than in children. Many adults have gradually learned to suppress certain traits in order to blend in – this process is known as “masking”. In addition, certain illnesses produce symptoms that are similar to autism. These include personality disorders and anxiety disorders.

It can be useful to review a diagnosis after a number of years. This is particularly true in the case of children whose autistic traits are less obvious. Doctors will also check the child’s overall development on a regular basis. 

Detailed information about autism assessments is available at gesundheitsinformation.de.

Autism spectrum disorders are developmental disorders that affect people’s entire way of living. This can often be very debilitating for people with autism and their families.

Treatment should always seek to:

• improve quality of life
• encourage social participation
• promote the autonomy and independence of autistic people

The extent to which treatment is successful depends to a large extent on how autism presents in the individual, the starting point of the treatment and the scope of support provided. 

A personalized treatment plan is created for children once they have been diagnosed. It may include the following elements:

• behavioral therapy, including social competence training
• speech therapy
• occupational therapy
• Information and advice (psychoeducation)

For children up to school-going age, early intervention is available in the form of behavioral therapy specifically designed for autism. Parents are involved in the treatment and may also receive support. Adults with autism can also attend psychotherapy.

Treatment can bring about improvements in child and adolescent development and result in a lessening of autistic traits. It can also help children to manage their autism more effectively and nurture their individual strengths. For adolescents and adults, the focus is more on accepting autism as part of their own identity and adapting their lives accordingly. The treatment of any accompanying illnesses may also be an important component of the treatment plan.

Autism varies very widely in the potential effects it can have on the lives of individuals and their families. Autistic people find it more difficult to make connections with others and they are often misunderstood. They frequently experience more difficulties in pursuing a career and building relationships. Some people with autism have severe impairments that cause them to need intensive support on a daily basis. In contrast, others cope very well and manage to live an independent life with a job and family. The severity of the impact of autism depends not only on how it presents in the individual and whether it involves any intellectual impairments, but also on their unique life circumstances and personal environment.

The following supports and benefits are available:

• equality measures (i.e., compensation for disadvantages)
• support assistants for daycare and school
• social education-based family support
• family support services
• medical/assistive aids
• benefits for personal assistance at work
• special living projects (such as supported group homes)
• care benefits

Most treatment and support services are paid for by integration assistance (“Eingliederungshilfe”) rather than by the health insurance funds. You can apply to youth welfare services (“Jugendamt”) or your social welfare office (“Sozialamt”) for integration assistance. 

Detailed information about help and support is available at gesundheitsinformation.de.

See also our article on support for children and adolescents in need of care for general information about this topic.

Parent initiatives and self-help groups offer people with autism spectrum disorders and their relatives the opportunity to get informed and receive advice as well as share personal experiences.

For contact details, visit Autism Germany (Autismus Deutschland e.V.) and Aspies e.V.