In brief
After the assessment comes a feedback conversation (in the guideline: "Aufklärungsgespräch", explanatory conversation). The 2016 guideline recommended that the diagnostic assessment be communicated by the specialised service. [2, Rec. 36] According to the guideline, those affected and their relatives experienced as helpful a detailed explanation (symptoms, causes, course, help, school, work and legal aspects), early planning of help, a fixed contact person and an empathetic approach. [2, Rec. 37] Summarised British guidelines also named a written report that explains the findings and reasons. [2, Ch. B.6.3.1] How this works in Germany varies greatly, according to the guideline.
This English translation was produced with AI assistance and has not yet been independently reviewed.
Status of the guideline: This article uses the S3 guideline on diagnosis (2016). It has expired. [1] The statements are not automatically wrong, but they are not backed by a valid guideline. No entitlement to particular contents can be derived from it.
Who communicates the diagnosis?
The guideline group recommended (consensus-based, strong consensus) that the diagnostic assessment be conveyed by the specialised service. [2, Rec. 36] It also noted, however, that in Germany there is no consensus on which professional groups and facilities offer assessment and on who communicates the diagnosis, when and how. Very different approaches and quality were to be assumed. [2, Ch. B.6.2.2, B.6.3.2] More on how assessment works: How an autism assessment works.
What should be discussed in the conversation
The German guideline summarised British guidelines as follows (state of the 2016 guideline): [2, Ch. B.6.3.1]
- Clarify in advance how the results are to be communicated.
- Without delay and carefully, discuss with the parents or legal guardians and, where appropriate, with the child or adolescent. For adults, the result should be explained in a way that suits their own understanding, with a profile of individual needs and a plan.
- Explain what autism is and how it can affect development and everyday life. The diagnosis should be explained with reference to the criteria.
- Discuss next steps if the diagnosis is uncertain, address specific help (also for co-occurring conditions) and consequences for school, training and the like.
- Name a contact person and further sources of information; in the British guideline for children, a follow-up appointment within six weeks was provided.
- For parents: discuss whether siblings might be affected.
- One source recommended informing parents and adolescents separately, one after the other or together, depending on the situation; the communication can be distressing, so contact with local professionals should be arranged.
As particularly important, the guideline named explicitly addressing fears and feelings of guilt about causes and consequences. [2, Rec. 37] More on first steps: After the diagnosis: first steps, My child has been diagnosed with autism – what happens next?.
The written report
The summarised British guidelines provided that you (or the parents) should, where possible, be given a written report that explains the findings and the reasons for the conclusions. The information (including the report) should be passed on to the GP and, if a consent form is available, to further key people such as early-years educators, teachers or social care staff. [2, Ch. B.6.3.1] It should be clarified who the reports are made available to. [2, Ch. B.6.3.1] A report often also contains diagnostic labels and codes; what the labels mean: What became of Asperger syndrome and childhood autism?, Diagnostic criteria for autism: DSM-5 and ICD-11 explained.
Questions you can ask
These are suggestions from the editorial team, derived from the points above, not requirements:
- What exactly was found, and what do you base that on?
- How does this affect my everyday life, school or work?
- Which help makes sense now, and who is the contact person for it?
- Will I get a written report, and to whom may it be passed on (and to whom not)?
- Is there a follow-up appointment where I can ask questions?
- Where can I find further information and exchange? More: Finding independent advice: what the EUTB does.
If no diagnosis is made
If no autism spectrum diagnosis was made, the reasons should be explained, according to the summarised British guidelines. [2, Ch. B.6.3.1] What can make sense then: No autism diagnosis – and now?.
What else you should know
- If you feel overwhelmed: you may interrupt the conversation, ask for time to think and write down questions. Note: this is a suggestion from the editorial team.
- You can bring someone with you. Note: this is a suggestion from the editorial team; whether this is usual at the facility concerned, you can ask beforehand.
- How the diagnosis fits the experiences of people who receive it late: Late diagnosis: what can change.
Note: This article offers general information. It does not replace a personal assessment, advice or treatment by professionals.
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)
- DGKJP/DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 1: Diagnostik. S3-Leitlinie, AWMF-Reg.-Nr. 028-018, Stand Text 23.02.2016. – Guideline (in German); expired
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