Autism

The autism spectrum is varied. It includes the following behaviors and challenges:

• Trouble interacting with other people (social interaction): People with autism often seem absent or withdrawn, and are less likely to make and maintain eye contact. Some are very sociable, but their behavior may seem unusual to outsiders. That’s because people with autism have difficulty understanding others' point of view. As a result, it's harder for them to interact with others and form relationships. They tend to misinterpret communication and struggle to understand ambiguity and sarcasm. They react unusually in many situations. For example, they may not show any interest in feelings expressed by other people.
• Communication problems: Speech may be delayed or impaired in some people with autism, or they may not talk to others at all. They also use fewer gestures to communicate things to other people. Their voice is more monotone (flatter) when they speak. Some constantly repeat certain words and sentences or repeat what other people say. But others speak in a very precise, elegant way.
• Stereotyped and repetitive behavior: People with autism tend to keep repeating certain behavioral patterns – like 'flapping' their arms or always doing things in a very particular way. They are often only interested in a few or unusual things, but in a very intense way. They struggle to be flexible and spontaneous. Predictable routines and rituals are very important to them.

They also sometimes react very sensitively – or insensitively – to sensory input, such as sound, smell or touch.

These traits vary from person to person, and some people don’t have certain traits at all. For a long time, specialists categorized autism into separate types: classic autism, Asperger’s syndrome, and atypical autism. But because they can’t always be clearly distinguished from one another, it is now more common to use the term autism spectrum disorder (ASD) or autism spectrum.

Many people with autism have other problems too. These may include things like sleep problems, eating disorders, anxiety or obsessive-compulsive disorder (OCD), tic disorders, attention deficit hyperactivity disorder (ADHD), epilepsy, or depression. Autism can also lead to challenging behavior like self-harm, fits of rage (meltdowns), and aggression. This is normally a sign that they are overwhelmed by something or feel misunderstood. About half of all people with autism have an intellectual disability. The other half have average or above-average intelligence, but only few are gifted.

Autism is present at birth (congenital) and the result of a developmental disorder affecting the brain. It is not entirely clear what causes the disorder. But genes play a big role. Children are more likely to be autistic if they have an autistic parent.

If parents already have a child with autism, it is also more likely that a second child will have autism. The chances are then about 10 to 20%. But the individual risk depends on the exact genetic cause. That can sometimes be determined through genetic testing in the first child and the parents. Depending on the result, the likelihood of a second child also having autism is then low (such as 1%) or high (50%).

The risk of a child having autism increases with their mother's and father's age. That’s mainly because genetic mutations become more common as we grow older. Complications during pregnancy can also be a factor, like a rubella infection (German measles) or premature birth. The risk is also increased if pregnant women take certain anti-epileptic drugs (especially the active ingredient valproic acid).

Important: Autism is not caused by vaccinations or by the way parents raise their children. Although these things are sometimes claimed, there is good scientific proof that they aren't true.

About 1 out of 100 people in Germany have an autism spectrum disorder (ASD) diagnosis. Boys and men are twice as likely to be diagnosed with it compared to girls and women.

The number of people known to be on the autism spectrum has increased a lot over the last thirty years. That is mainly because more people are being diagnosed with it than in the past. But it's not clear whether autism is actually more common nowadays.

Autism is generally a lifelong condition. But it can develop in very different ways over time. The typical traits often become milder or change as time goes by. Some traits may become stronger, too – either temporarily or permanently. But many children and teenagers learn to communicate and interact better with other people over time.

Signs of autism sometimes already appear very early, at the age of 1 to 2 years. But some people live with autism for many years or even decades without it being detected. They might have felt that they're somehow different for a long time, but not found an explanation for it before their diagnosis.

Early signs of autism in children may disappear over time, or other causes may be found. This is especially true in children with milder signs. But some children develop normally in the first few years of life and only show typical autism traits later on.

A lot of people with autism need intensive support for their whole lives. Some can live independently, have a career, and start a family. But even they sometimes need help with challenges in daily life. In time, many people manage to get by better with their autism. But that really depends on the support they get and how well their specific needs are taken into account. The key is how successfully the autism-specific challenges are handled and how much any related conditions affect their lives. These commonly include sleep problems, eating disorders and anxiety disorders.

Please note: Some of the following information describes the situation in Germany. You may find that things are different elsewhere.

If you have a child whose behavior seems unusual, it can be very worrying. You can then talk to your pediatrician about it – perhaps as part of a regular check-up. Where necessary, your child will be referred to a specialist. Adults can speak to their family doctor first. It is also possible to contact a psychotherapist or psychiatrist directly.

Autism can only be diagnosed by psychiatrists and psychotherapists. Children and teenagers should see a child psychiatrist or psychotherapist. The diagnostic process is quite complex and takes a lot of time. That’s because it’s important to take a close look and rule out any other possible causes. The diagnosis involves

• talking with the child and parents,
• asking the parents detailed questions using special questionnaires,
• observing the child's behavior when interacting with other people or when playing,
• developmental tests, especially to assess intelligence and language skills, and
• medical examinations.

These different steps take place over a number of appointments. The child’s development is often monitored for a while before a diagnosis is made. It is sometimes already possible to diagnose autism between the ages of 1 and 2. But the age at which a reliable diagnosis can be made depends on things like how clear the signs are and how they develop over time.

Diagnosing autism in adults involves a similar amount of time and effort. The diagnosis is usually more difficult because the symptoms often aren't as clear-cut as they are in children. Many adults will have learned to hide certain traits over time so they don't stand out. This is called “masking.” What’s more, some typical symptoms of autism can be caused by other conditions instead, such as a personality disorder or anxiety disorder.

It can be a good idea to have the diagnosis checked every now and again. This is especially true for children whose autistic traits aren't very strong. Doctors also regularly check how the child is developing overall.

An individual treatment plan is drawn up for children after the diagnosis. That may include the following:

• Behavioral therapy, including social skills training
• Speech therapy
• Occupational therapy
• Information and advice (psycho-education)

Preschool children are offered special early intervention services for autism, based on behavioral therapy. Parents are included in the therapy and are also offered support themselves.

Adults with autism can see a psychotherapist, too.

In certain cases, medication can be used to reduce challenging or distressing stereotyped behavior in people with autism. Conditions related to autism can be treated with medication as well. These include ADHD, sleep problems, anxiety disorders, obsessive-compulsive disorder (OCD), depression and epilepsy. But autism itself can't be treated or cured with medication.

Treatment can improve children's and teenagers' development and reduce the challenges associated with autism. It can also help them to manage better overall and enhance their strengths. For teenagers and adults, it is more a question of accepting autism as part of their identity and adapting their daily life to it. Treating related conditions can be important, too.

The ways in which autism affects daily life (your own and that of your family) can vary greatly. People with autism find it harder to connect with others and are often misunderstood. They're more likely to have trouble holding down a job or forming relationships. Some people with autism have so many challenges that they need a lot of help in everyday life. But others lead an independent life, have a good job and a family, and generally manage well.

Many parents ask themselves what type of kindergarten and school would be best for their child. Would they do better in special needs facilities or can they go to a regular kindergarten and school? Parents can get advice about this from places like autism centers.

It is usually helpful to inform the people around you (family, friends, school, employers) about autism and how to interact with people with autism. Other people often have to learn how best to handle the typical behaviors and traits.

The following support is available in Germany:

• Compensation for disadvantages (German: Nachteilsausgleich)
• Learning support assistants at kindergarten and school (Kitabegleitung / Schulbegleitung)
• Home-based family assistance (sozialpädagogische Familienhilfe)
• Family support services (familienunterstützender Dienst)
• Medical aids
• Assistance services at work
• Special residential projects (for example, assisted living facilities)
• Nursing care services

In Germany, the costs of most treatments and support services are covered by integration assistance (Eingliederungshilfe) and not by health insurance providers. To apply for integration assistance, contact your youth welfare office (Jugendamt) or social welfare office (Sozialamt).

People who have been granted a degree of disability over 50 can get a severely disabled person's ID card (Schwerbehindertenausweis). The aim is to compensate for certain difficulties related to autism – for example, with the help of reduced entrance fees, discounts on "Hilfsmittel" medical aids, and more tax relief. If you have a degree of disability between 30 and 50, you can still apply to get equal status with severely disabled people in order to receive this extra help. You can find out more about how to apply for the ID card here (in German).

When people are ill or need medical advice, they usually go to see their pediatrician or family doctor first. Information about health care in Germany can help you to navigate the German healthcare system and find a suitable doctor. You can use this list of questions to prepare for your appointment.

Various parents’ associations and support groups offer help and advice. You will find a list of local offers in Germany on the websites of Autismus Deutschland e. V. and Aspies e. V.