How is autism diagnosed?

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

If you notice any unusual behavior in your child, it’s best to see your pediatrician or family doctor first. They will do an initial assessment and then discuss what to do next. Sometimes talking to the doctor or having a few tests done is enough to get an explanation or further help.

Parents can also use their child's regular check-up appointments to bring up any concerns they might have. Or the doctor might spot possible signs of autism at one of those check-ups.

Pediatricians and family doctors can use certain questionnaires and tests to check for these signs. But that's not enough to make a diagnosis.

In Germany, autism can only be diagnosed by healthcare professionals with certain qualifications and titles:

• Doctors who are specialized in psychiatry and psychotherapy for children and teenagers (Kinder- und Jugendpsychiatrie und -psychotherapie)
• Doctors who are specialized in psychiatry and psychotherapy (Psychiatrie und Psychotherapie)
• Psychotherapists for children and teenagers (Kinder- und Jugendlichenpsychotherapie)
• Psychologists who are specialized in psychotherapy (psychologische Psychotherapie)
• Doctors who are specialized in treating children and teenagers (Kinder- und Jugendmedizin) and have additional qualifications

The diagnosis can be made in specialized practices or clinics, and in social pediatric centers (Sozialpädiatrisches Zentrum). If it is done in psychotherapy practices, specially qualified doctors also have to be involved.

The diagnosis itself is very thorough and takes time. That's because the specialists have to look very carefully in order to make sure that the autism-like behaviors aren't being caused by something else. The testing involves:

• Talking with the child and parents: This is a way to get an idea of what problems there are and what the family situation is.
• Questionnaires: The parents are asked detailed questions about things like how their child behaves and communicates, and how she or he has developed over time. Kindergarten and school staff might also be asked some questions. The specialists look for risk factors such as complications during pregnancy or whether the child has relatives with autism.
• Behavioral assessment: The child's behavior is observed while they do things like interacting with other people and playing.
• Development tests: These mainly include an intelligence test and a language development assessment. If tests like that aren’t possible (perhaps because the child has very limited abilities), this is estimated based on observation.
• Medical examinations: These may include things like a physical examination, hearing and vision tests, and genetic tests. They are done to rule out other diseases or identify related medical conditions. The type of testing that is done will be different for different people.

During the tests, special attention is paid to how the child interacts with other people, how well they can talk, and whether they display any stereotyped behaviors.

Documents like kindergarten reports, school reports and doctor’s letters can provide information about the child’s development and whether other people have already noticed any signs.

It takes a similar amount of time and effort to diagnose autism in adults as it does in children and teenagers. But the diagnosis is often more difficult in adults because the signs are usually less obvious. What's more, other conditions (such as personality disorders or anxiety disorders) can cause similar symptoms.

Adults who suspect they may be on the autism spectrum can go to their family doctor for a first assessment, or go straight to a psychiatrist or psychologist. If needed, these healthcare professionals can then refer you to a place that specializes in the diagnosis of autism.

There are a number of reasons for this:

• It is difficult to get appointments in specialized facilities. You sometimes have to wait longer than one year.
• It is not always clear which healthcare professional is responsible. People then go to various practices to seek advice about the signs they have noticed.
• Other diagnoses are often made first, but they don't quite fit. It only becomes clear later that the diagnosis was wrong and that the cause was autism instead.
• The thorough diagnosis itself takes time.
• Autism is often detected very late in people with less obvious traits – sometimes only in adulthood. This is more common in women.

Many adults with a late diagnosis have already felt 'different' for a long time, but hadn’t yet found an explanation. They might have consciously or unconsciously suppressed the traits so that they can function and don’t stand out. Known as masking, this can mean that they only take the step of seeing specialists after a very long time. The masking can also make it more difficult to diagnose autism.

Yes. For this reason, the testing should be done according to certain scientific standards. Then the diagnosis is much more likely to be correct. The thorough testing is mainly carried out in practices and clinics that are specialized in child psychiatry, and also in social pediatric centers (Sozialpädiatrisches Zentrum). Some psychotherapists are specialized in diagnosing autism, too.

Autism-like symptoms can have other causes. Many people behave unusually sometimes, but there can be different reasons for that. Also, challenging behavior like anger is sometimes a reaction to distressing circumstances (like a separation or when everything gets too much) and then it has nothing to do with a developmental disorder like autism. And it’s normal for children to develop at different rates, especially in early childhood. That can make it harder to tell the difference between 'unusual' and 'normal' behavior.

Sometimes, autism-like behavior is caused by other problems: For example, if a child only learns to talk quite late, that could be because they have a different kind of developmental disorder (not autism). Or traumatic experiences can cause a child to become very withdrawn and get angry very quickly. In some children, having too much screen time and spending too much time alone can make autism-like behaviors worse. These behaviors can also be caused by mental health problems such as depression, ADHD, obsessive-compulsive disorders (OCD), anxiety disorders or reactive attachment disorders.

The number of people being diagnosed with autism has increased a lot over the last twenty years. In particular, there has been an increase in the number of diagnoses in children who do not have an intellectual disability – in other words, their behaviors and traits are most typical of the autism profile that used to be known as “Asperger’s syndrome.”

There are a number of explanations for this: More people know about autism, and more people suspect that their child or they themselves might be autistic. Doctors now use other criteria to make the diagnosis. Autism is less likely to be overlooked nowadays – but the number of wrong diagnoses might also have increased. It is not clear whether more people have autism now, or whether it is simply diagnosed more often.

If a child or teenager is diagnosed with autism spectrum disorder, specialists will assess what kind of support they need. That might include special behavioral therapy for autism, special assistance at kindergarten or school, speech therapy, or assistance in family life. A treatment plan is drawn up together with the therapists. Parents are also offered support and advice. It is important for them to know where they can go for help.

For adults, it’s usually first a question of accepting the diagnosis and understanding what it means for them in their daily lives. There are various support options for adults, too – at home and at work. Certain problems (like trouble understanding other people's needs and emotions) can be tackled with psychotherapy.