How an autism assessment works

Step by step: from suspicion to report

The prompt can come from someone in the family, a professional at day-care or school, or the person themselves. The expert overview then describes this route: ^[1]

1. First appointment. This takes place at a practice or outpatient clinic for (child and adolescent) psychiatry or at a social paediatric centre (Sozialpädiatrisches Zentrum). A first assessment is made there: through a detailed conversation (history), observation and, where appropriate, questionnaires.
2. Basic assessment in children. This includes an examination of development, language and intelligence.
3. Physical examination – in children and adults.
4. Autism-specific work-up. If the suspicion is confirmed, a comprehensive examination with standardised methods follows at a centre specialising in autism.
5. Clarifying co-occurring conditions and ruling out other diagnoses.
6. Diagnosis and recommendations. The findings are brought together, and individual, clearly worded recommendations for treatment and support are drawn up.

The authors stress that the process should be participatory and transparent. ^[1]

Which methods are used

The assessment always draws on several methods and sources of information: ^[1]

• History: Questions cover pregnancy and birth, early development of motor skills, language and toilet training, day-care and school, the current life situation, and strengths, needs and expectations.
• Information from others: Reports from day-care, school or earlier treatment.
• Screening questionnaires: They only indicate whether further assessment makes sense and are not suitable for making a diagnosis. Their specificity in the clinical setting is low, which means they also flag people who do not have autism. ^[1] More in the article Screening questionnaires.
• Clinical observation: How does a person play, communicate and interact in different situations?
• Physical examination: It can, for example, identify hearing problems, vision problems, epilepsy or genetic syndromes.
• Standardised autism-specific methods: The expert overview calls the combination of two methods the internationally recognised gold standard and at the same time notes that specificity in the clinical setting is not unrestricted. ^[1]
  • A structured interview with carers (ADI-R) on early development and current abilities.
  • A standardised observation of behaviour (ADOS-2) with activities chosen according to age and language level. For children without speech this is done more through play, for adolescents and adults more through conversation.

How the individual methods work is explained in the article Diagnostic methods.

Why ruling out other diagnoses matters

Many features associated with autism also occur in other diagnoses or can be variations of normal child development. ^[1]

Conditions that often have to be told apart: ^[1]

• in children and adolescents: intellectual disability without autism, language development disorders, attention disorders, attachment disorders, social anxiety and conduct disorders.
• in adults: among others personality disorders, obsessive-compulsive disorders, attention disorders, mood disorders, social phobia and schizophrenia.

At the same time, autism and another diagnosis can also exist together. This makes telling them apart difficult. ^[1] Telling them apart – what is autism, what is something else, what is both – is demanding. That is why assessment belongs in the hands of specifically trained professionals. ^[1]

What comes out at the end

At the end there is a diagnosis – or the finding that there is no autism diagnosis – and concrete recommendations that can be checked. ^[1] Ask if anything remains unclear. What happens afterwards is set out in After the diagnosis: first steps and in No autism diagnosis – what now?.

Limits of the assessment

The diagnosis rests on observable behaviour, on information from carers and on the professional evaluation of test results. There are so far no specific biological markers. ^[1] The standardised methods are not free of error either: people with other mental health diagnoses can also show striking scores there. ^[1] The authors of the expert overview judge the quality of diagnostic assessment in clinical practice to be still inadequate. ^[1]

Sources and literature

1. Höhne E, Kamp-Becker I. Diagnostik der Autismus-Spektrum-Störung. Pädiatrie 2024;(4+5):27–32. – Expert overview (in German)
2. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 1: Diagnostik. S3-Leitlinie, AWMF-Reg.-Nr. 028-018, Textstand 23.02.2016. – Guideline (in German) (expired; according to a note in the document, under revision)
3. DGKJP. Aktuelle Leitlinien (Eintrag 028-018: „Gültig bis 04.04.2021“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)