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Open research questions

Who is it for? For interested readers who want to know where there are still gaps in knowledge about autism.

In brief

Much is still open. The guidelines themselves explicitly named a need for research, for example on care and diagnostics in Germany, on measuring the progress of therapy over time, on support for families, studying and work and on regression of skills. More recent review articles show gaps on loneliness, ageing and support for parents. This article puts the gaps in context; it does not say that there are no studies on the topics mentioned, but where the authors of the sources read called for more research.

This English translation was produced with AI assistance and has not yet been independently reviewed.

Status of the guidelines: Two of the sources are S3 guidelines from 2016 and 2021, both expired (validity according to the DGKJP “until 04.04.2021” and “until 23.03.2026” respectively). [3] Individual questions may have been answered since then. The overview is not a complete list.

Diagnostics and care

  • Epidemiology and care pathways: The 2016 guideline stated that in Germany there were no epidemiological data on autism spectrum disorders and that the path to diagnosis had not been studied empirically; it called for targeted health services research documenting the process up to diagnosis, the actual need for care and costs. [1, Ch. B.1.2, B.1.4] More on prevalence: How common is autism?.
  • Monitoring over time: In Germany there were no special procedures with which progress in therapy and support could be made visible; proven foreign-language instruments should be translated, standardised and validated. [1, Ch. B.7.4]
  • Early signs: The body of studies on warning signs in infancy was weak; features had not been replicated. [1, Ch. B.2.5.1] More: First signs in babies and toddlers.
  • Measuring executive functions: The authors of a meta-analysis named as a priority developing practicable measurement procedures with clinical informative value. [4]

Therapy and support

  • Practical everyday skills at school: Implementation should be studied systematically, first in feasibility studies, then in randomised studies. [2, Rec. 57]
  • Regression of skills: The body of studies was “very poor”; the guideline called for research on causes, new medicines and the effect of specific therapies. [2, Rec. 58]
  • Effectiveness in everyday life: Many procedures had only been tested in small, non-blinded studies and should be replicated. [2, Ch. C.4.2.2] More: Evidence on therapies at a glance.

Families, school, work

  • Support for families, especially for siblings and partners: further research. [2, Rec. 108]
  • Studying: There were hardly any studies on support in university studies; further research was “urgently recommended”. [2, Rec. 112]
  • Vocational rehabilitation: The body of studies was poor overall; further research was urgently recommended. [2, Rec. 116]

Adults, ageing, loneliness

  • Ageing: A review found only 12 qualitative studies on people aged 50 and over and called for more research on ageing and autism, better services and training of professionals. [5] More: Ageing on the spectrum.
  • Loneliness: There is little research that asks adults on the spectrum directly about their experience, and hardly any specially developed questionnaires. [6]
  • Parents on the spectrum: The experience of support services is described in only a few qualitative studies (12 in the review). [7] More: Parents with autism.

Basic research

Who does research and who is asked?

A concept article from a British seminar series, shaped jointly by people with and without autism, calls for participatory research: people on the autism spectrum should help shape and lead research. The authors name respect, authenticity, assumptions, infrastructure and empathy as themes; they see this as a prerequisite for research that reaches practice better. [8] The therapy guideline reproduced perspectives of self-advocacy groups in a few places, for example on exposure (Aspies e. V.) and in dissenting votes from Autismus Deutschland e. V. [2, Rec. 14, 27] More in a separate article on participatory research (planned).

What do we know – what is still open?

Well supported: That the sources named agree in identifying a need for research in the areas above. [1; 2; 5; 6; 7]

Open:

  • Whether the research gaps named in the guidelines have since been closed, we have not checked systematically.
  • Which questions matter most to people on the autism spectrum themselves is supported in the sources read only by the call for more participation. [8]
  • On many everyday and care questions in Germany, data that we have read are missing.

Note: This article offers general information. It does not replace professional advice.

Sources and literature

  1. 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 (Kap. B.1.2, B.1.4, B.2.5.1, B.7.4). – Guideline (in German) (expired; according to the document note under revision)
  2. 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. 27, 57, 58, 108, 112, 116; Kap. C.4.2.2). – Guideline (in German); expired on 23 March 2026 (see no. 3)
  3. 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)
  4. Demetriou EA, Lampit A, Quintana DS, et al. Autism spectrum disorders: a meta-analysis of executive function. Molecular Psychiatry 2018;23(5):1198–1204. https://doi.org/10.1038/mp.2017.75 – Meta-analysis
  5. Nicholas DB, Nelson H, Shafai F, et al. Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature. J Autism Dev Disord 2026. https://doi.org/10.1007/s10803-026-07343-y – Scoping review
  6. Umagami K (in PubMed als Grace K geführt), Remington A, Lloyd-Evans B, Davies J, Crane L. Loneliness in autistic adults: A systematic review. Autism 2022;26(8):2117–2135. https://doi.org/10.1177/13623613221077721 – Systematic review
  7. Rider JV, Honey A, LaVerdure AE, et al. Autistic Parents’ Experiences Accessing Parenting Support: A Systematic Review and Meta-synthesis of Qualitative Research. Autism 2026. https://doi.org/10.1177/13623613261464212 – Systematic review
  8. Fletcher-Watson S, Adams J, Brook K, et al. Making the future together: Shaping autism research through meaningful participation. Autism 2019;23(4):943–953. https://doi.org/10.1177/1362361318786721 – Concept article
  9. van Rooij D, Anagnostou E, Arango C, et al. Cortical and Subcortical Brain Morphometry Differences Between Patients With Autism Spectrum Disorder and Healthy Individuals Across the Lifespan: Results From the ENIGMA ASD Working Group. American Journal of Psychiatry 2018;175(4):359–369. https://doi.org/10.1176/appi.ajp.2017.17010100 – Mega-analysis

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