Cooperating with families

Involving parents without turning them into therapists

In the preschool years, parents should be involved in the recommended therapy approaches and systematically guided in supportive interaction, “without, however, themselves becoming therapists”. In primary school and adolescence, parents should support homework from therapies in order to promote transfer into everyday life. ^{[1, Rec. 106]} If it is mainly the parents who implement at home, guidance should take place in direct interaction with the child (“parent training alone is not sufficient”) and attention should be paid to the strain on parents. ^{[1, Rec. 10]}

Information, consent and joint decision

• Legal guardians must be informed about every intervention and consent to it. For adolescents, the adolescent should, where possible, have a say in involving the legal guardians. ^{[1, Rec. 106]} That parental custody includes representing the child is regulated by section 1629 para. 1 BGB. ^[3]
• People with autism and their families should be informed in detail and in an understandable way about treatment options, support options, legal requirements and entitlements, and a joint decision-making process should take place. ^{[1, Rec. 6]}

Asking about wishes and planning together

People with autism should be asked regularly what wishes, needs and expectations they have of their care; for children and adolescents also the legal guardians. Those affected or their legal guardians should be involved in planning in a participatory approach. The success of treatment should be measured not only by core features but also by life satisfaction. ^{[1, Rec. 4]}

Psychosocial services should be based on the subjective needs of parents and relatives, comprise help at all levels and be suited to life stage, topic and need. ^{[1, Rec. 106]}

Siblings and other relatives

All parents should be offered psychoeducation, including on possible co-occurring conditions, after the diagnosis. On request, parents, caregivers, siblings and other relatives should be offered individual psychoeducation and advice on how to deal with the situation; siblings should be offered appropriate support and psychoeducation. ^{[1, Rec. 106]} More: Siblings of children with autism and Self-care for parents and relatives.

Adults on the spectrum

For adults, the guideline named: if parents have taken over legal guardianship, they should be informed about every intervention and consent; without legal guardianship, parents and other relatives can be involved in any form of therapy at the person’s request. ^{[1, Rec. 107]} The guideline stated that involving relatives of adults is not usual in Germany and is partly not wanted. ^{[1, Ch. C.10.1]} On guardianship: Coming of age at 18.

What else you should know

• Families are different. The guideline named no study on which forms of communication with families work particularly well; the notes above are recommendations from expert consensus.
• Support for the family concretely: Relief for families, Finding advice.
• Cooperation with schools: Good cooperation between parents and school.
• Not covered: conducting conversations when autism is suspected (that is a topic of its own) and cultural or linguistic particularities in 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 (Empf. 4, 6, 10, 106, 107; Kap. C.10.1). – 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)
3. § 1629 BGB – Vertretung des Kindes, Abs. 1 (www.gesetze-im-internet.de/bgb/__1629.html). – Statute (German federal law, in German)