Informing grandparents, friends and surroundings

Who decides what is told?

For children, the legal guardians decide in the first instance. For adolescents, the guideline stated that they should, where possible, have a say in involving the legal guardians. ^{[1, Rec. 106]} Outside therapy too, it is natural to ask older children and adolescents what may be told about them. This is a suggestion from the editorial team. Adults on the spectrum decide themselves whom they inform.

What people around you should know

For teachers and early-years educators, the guideline named these contents: symptoms and course, frequent co-occurring conditions (such as anxiety, compulsions, depression, epilepsy, sleep disorders, ADHD), the importance of transitions such as changes of school or care, the children’s and adolescents’ own experience, and the effects on family and siblings. ^{[1, Rec. 109]}

For grandparents and friends you can derive from this (practical suggestion from the editorial team, not backed):

• Explain concretely rather than in general terms: What overwhelms your child, what helps, what is a good sign?
• Announce transitions: Visits, celebrations and journeys are changes; the guideline named changes and transitions as an area in which people with autism may need support. ^{[1, Ch. C.10.2.1]}
• Do not forget siblings: They are part of the affected family. ^{[1, Rec. 106]} More: Siblings of children with autism.
• In the face of prejudice, point to checked information: for example Do vaccinations cause autism? and What is autism?.

Relatives can get support themselves

On request of parents, caregivers, siblings or other relatives, according to the guideline individual psychoeducation and advice on how to deal with the situation should be offered. ^{[1, Rec. 106]} Contact points: Finding advice.

What else you should know

• You do not have to inform everyone. Decide whom the information helps and whom it does not.
• Not covered: how grandparents experience the diagnosis or which forms of conversation prove their worth. The editorial team has no checked source on this.
• Relief from relatives can also be practical; benefits that supplement this: Relief for families.

Sources and literature

1. 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 (Kap. C.10.2.1; Empf. 106, 109). – Guideline (in German); expired on 23 March 2026 (see no. 2)
2. DGKJP. Aktuelle Leitlinien (Eintrag 028-047: „Gültig bis 23.03.2026“). https://www.dgkjp.de/wissen/aktuelle-leitlinien/ – Professional society (website in German)