In brief
No autism diagnosis does not mean there are no difficulties. The 2016 guideline provided that, if no autism diagnosis is made, the reasons should be explained. [3, Ch. B.6.3.1] Studies from specialist clinics found that, after referral, an autism spectrum diagnosis was made in 30 to 70 % of cases; what was present in the other cases, the guideline does not say. [3, Ch. B.1.2] Support may be needed for these other explanations. And: if new information emerges, the question of autism can be asked again, even if the diagnosis was once ruled out earlier. [3, Ch. B.2.4]
This English translation was produced with AI assistance and has not yet been independently reviewed.
Status of the guideline: This article draws on the S3 guideline on diagnosis (text version 23.02.2016). It has expired: according to the overview of the DGKJP it was valid “until 04.04.2021”. [1] The document carries a note that it is currently being revised. [3] Newer studies are not taken into account. We will update the article as soon as a new version is available.
Understanding the result
At the feedback appointment, ask about the reasons and for a written report. The British source guidelines named: explaining the reasons if no diagnosis was made, and offering a follow-up appointment within six weeks. [3, Ch. B.6.3.1] Whether this is how it works at your service is open; in Germany there was no consensus on who communicates the diagnosis, when and how. [3, Ch. B.6.2.2]
If noticeable features remain
Features of autism can be confused with other disorders and vice versa; differentiation is a central part of assessment. [2] According to the expert overview, common other explanations in childhood and adolescence include intellectual disability without autism, developmental language disorders, attention disorders, attachment disorders, social anxiety disorder and conduct disorder; in adulthood, for example, personality disorders, obsessive-compulsive disorders, attention disorders, affective disorders, social phobia and schizophrenia. [2] More: Differentiation: what can look similar?.
A new assessment
All three source guidelines stressed that at every stage of life the diagnosis should be considered when new information becomes apparent, even if it was once ruled out. [3, Ch. B.2.4] Children with developmental disorders should be monitored for autism throughout the preschool years; about 10 to 30 % of children with developmental concerns received an autism spectrum diagnosis within one to two years. [3, Rec. 32, 33]
Support without an autism diagnosis
Support, therapy and help are based on need, not only on a single diagnosis (editorial assessment). For help with other diagnoses, doctors, advice centres and the EUTB can advise: Finding advice. Support at school: Good cooperation between parents and school. Whether a particular benefit is possible without an autism diagnosis, we have not checked, and it depends on the benefit.
What else you should know
- Second opinion: You can approach another specialised service. Notes on services: Diagnosis in children and Assessment in adulthood. Whether this is necessary is your decision.
- The result can be disappointing. In acute emotional distress: TelefonSeelsorge, 0800 1110111. [4]
Note: This article offers general information. It does not replace medical advice.
Sources and literature
- DGKJP. Aktuelle Leitlinien (Einträge 028-018 „Gültig bis 04.04.2021“ und 028-047 „Gültig bis 23.03.2026“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)
- Höhne E, Kamp-Becker I. Diagnostik der Autismus-Spektrum-Störung. Pädiatrie 2024;(4+5):27–32. – Expert overview (in German)
- 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 the document note under revision)
- TelefonSeelsorge Deutschland: Startseite mit Rufnummern. https://www.telefonseelsorge.de/ – Counselling service (website in German)
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