Self-care for parents and relatives

Why support of your own belongs here

According to the guideline, families are an important support but themselves need help: personal, social and professional. ^{[1, Ch. C.10.1]} That families themselves need help was explicitly named by the guideline.

What the 2021 guideline recommended

For childhood and adolescence, the guideline stated, among other things (consensus-based, strong consensus):

• Support services should be based on the subjective needs of parents and relatives, comprise help at all levels (psychological, psychoeducational, material) and be available suited to life stage, topic and need. ^{[1, Rec. 106]}
• Psychoeducation (in a group or individually) about autism including possible co-occurring conditions should be offered to all parents after the diagnosis, as detailed as necessary. ^{[1, Rec. 106]}
• 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]}
• Parents should be involved in therapies and guided in supportive interaction with the child, “without, however, themselves becoming therapists”. ^{[1, Rec. 106]}

For adults on the spectrum, parents and other relatives can, at the person’s request (or that of their legal guardian), be involved in any form of therapy. ^{[1, Rec. 107]} The guideline itself points out that involving relatives of adults is not usual in Germany and is partly not wanted. ^{[1, Ch. C.10.1]}

What studies showed on stress and social support

The guideline reproduces three studies (not checked by the editorial team itself, hence only as an overview):

• A study with mothers of children under six years shortly after the diagnosis tested a short problem-solving training (six sessions). Afterwards fewer mothers reported stress symptoms than in the control group; for depressive symptoms there was no clear difference. ^{[1, Ch. C.10.1.2]}
• A survey of parents at a London special school found: stress and well-being depended on features of the child, but the parents’ personality and their coping strategies were decisive; lack of social support was linked with more stress. ^{[1, Ch. C.10.1.2]}
• A New Zealand study with 92 participants described social support as an important protective factor. The guideline concludes from this that support should be based on the stress experienced and be holistic. ^{[1, Ch. C.10.1.2]}

The guideline also stated that the evidence on psychosocial services for families was insufficient overall (few studies of low quality). ^{[1, Ch. C.10.1.1]} It recommended further research, especially on siblings and life partners. ^{[1, Rec. 108]}

What else you should know

• Getting help is allowed. Contacts include, for example, advice centres and self-help; orientation: Finding advice: EUTB and other services. In acute emotional distress you can reach the TelefonSeelsorge free of charge on 0800 1110111. ^[3]
• Relief is also possible financially and organisationally: Relief for families, Care benefits.
• Siblings have needs of their own: Siblings of children with autism.
• Not covered: concrete exercises or therapies for parents. The editorial team has no checked source on this; no guideline chapters on it have been read.

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.10.1, Empf. 106–108). – 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. TelefonSeelsorge Deutschland: Startseite mit Rufnummern. https://www.telefonseelsorge.de/ – Counselling service (website in German)