Talking to your child about their diagnosis

What the guidelines said

• A detailed, understandable explanation is part of assessment; basic information on causes, treatment options and prognosis should be given. ^{[3, Ch. B.6.3.1]}
• From the point of view of those affected and their relatives, an empathetic approach, high professional competence of the person explaining, a fixed contact person and early planning of help are helpful. ^{[3, Rec. 37]}
• According to the Scottish source guideline (SIGN), which the German guideline reproduces, it can make sense to communicate the diagnosis to parents and children separately, one after the other or together. ^{[3, Ch. B.6.3.1]}

When and how – suggestions

Practical suggestions from the editorial team, not from the sources:

• You know your child best. Some children ask early, others later; it can help not to wait too long if your child notices that something is “different”.
• Explain concretely and calmly what autism means for your child (strengths and difficulties), and do not just name a word.
• Split the conversation into several small steps and give the child room for questions.
• The assessment service can help with the first conversation; ask about it.

Fears and feelings of guilt

The guideline named as very important concretely addressing fears and feelings of guilt about causes and consequences. ^{[3, Rec. 37]} This applies to parents; children too can have questions about whether they are “to blame”. Causes: Causes of autism.

Who else is informed

For children, the legal guardians decide in the first instance. For therapy, the guideline provided that adolescents should, where possible, have a say in involving the legal guardians. ^{[4, Rec. 106]} Who learns about the diagnosis is best discussed together (suggestion from the editorial team). How you can inform family and surroundings: Informing grandparents, friends and surroundings.

What else you should know

• First steps after the findings: My child has been diagnosed with autism – what happens next?.
• Advice: Finding advice. For children and adolescents there is the Kinder- und Jugendtelefon of Nummer gegen Kummer. ^[2]
• Not covered: studies on the effect of the timing of the explanation. We have read none.

Sources and literature

1. 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)
2. Nummer gegen Kummer e. V.: Kinder- und Jugendtelefon. https://www.nummergegenkummer.de/ – Counselling service (website in German)
3. 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)
4. DGKJP, DGPPN et al. Autismus-Spektrum-Störungen im Kindes-, Jugend- und Erwachsenenalter. Teil 2: Therapie. S3-Leitlinie, AWMF-Reg.-Nr. 028-047, Stand Text 02.05.2021. – Guideline (in German); expired on 23 March 2026