Suspected autism: approaching parents

Your role and its limits

The diagnosis is made by a specialised service; the 2016 guideline recommended a stepped approach: first orienting clarification with age-specific screening instruments and clinical assessment, then, if the suspicion is confirmed, referral to a specialised service. ^{[2, Rec. 7]} Screening of all children should not take place, because the rate of false positive and false negative results was high for all instruments available in German and specialised services would be overloaded. ^{[2, Rec. 12]} Screening was to be considered where there are risk factors and at least one indication of autism. ^{[2, Rec. 13]} The decision on whether clarification is needed should be based primarily on clinical assessment. ^{[2, Ch. B.3.2.1]} For you this means: you collect and share observations without naming diagnoses. Note: this is a conclusion by the editorial team. More on early signs: Early signs in infants and toddlers, Signs in school children and adolescents.

What the guidelines said on clarification

• Core features are present early but in part only become noticeable later, for example on entering nursery or school. ^{[2, Ch. B.2.1]}
• If the concern remains: As a note from a British guideline, the guideline named that not all children with autism are recognised by screening instruments and that parents should therefore be encouraged to seek clarification again if concern about development remains. ^{[2, Ch. B.3.2.1]}
• Urgent need for improvement: The guideline group saw an urgent need for improvement in Germany in early, prompt and correct diagnosis. ^{[2, Statement 6]} Note: waiting times and routes: Referral, costs and waiting times, Diagnosis in children: who, where, how?.

What parents expect from professionals

The therapy guideline summarised studies on parents’ expectations. In a British survey, parents named as important therapy goals, among others, more contentment, less anxiety and a positive self-image in their child; parents and young adults wished autism to be seen more as “being different” rather than only as a “deficit”. Parents also said that professionals often only noticed important difficulties when the child is in social situations at school. ^{[3, Ch. C.2.2.2, pp. 15 f.]} In a small US study of ten fathers, they wished from professionals openness and honesty, that they listen, share their knowledge of autism and find suitable treatment; also a place for information and exchange with other parents. The authors of the guideline pointed to the small, selective sample. ^{[3, Ch. C.2.2.2, pp. 17–18]} The guideline required asking parents and affected people regularly about their wishes and expectations and involving them in planning in a participatory way. ^{[3, Rec. 4]}

Suggestions for the conversation

The following points are suggestions from the editorial team that follow the expectations and recommendations above and do not come from a conversation guideline:

• Prepare: Note concrete, verifiable observations (situation, what the child did, how often, what helped) rather than judgements.
• Begin with strengths and ask the parents for their view: What do they experience at home, what concerns them?
• Observation instead of label: “I notice that …” instead of “I think he has autism”.
• Listen and decide together how to proceed, for example a conversation with the paediatrician. More on routes: Diagnosis in children: who, where, how?.
• Be sensitive: The conversation can be distressing. Time, a calm setting, a contact person and a follow-up appointment help. ^{[2, Ch. B.6.3.1]}
• Do not push: Parents decide on next steps; if concern remains, it stays possible to talk again later. Note: this is a suggestion from the editorial team.

What else you should know

• Cooperation in the further course: Cooperating with families, Good cooperation between parents and school.
• Your observations count: A Scottish guideline (SIGN), which the German guideline summarised, recommended obtaining information on psychosocial functioning from nursery and school. ^{[2, Ch. B.4.8]} Whether and how you pass on observations, you clarify with the parents. Note: this is a suggestion from the editorial team, not legal information on data protection.
• Nursery and school: Autism in nursery: notes for professionals, Pupils with autism in lessons.

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. 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
3. 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