Survey regarding the terminology and the research themes

We conducted a survey that focused on stakeholders’ preferences for autism terminology an research themes in Finland. The stakeholders consisted of adults on the autism spectrum, their relatives, the professionals working with the people on the AS and, the researchers. There are many terms referring to the autism spectrum and people on the autism spectrum. For example, in the UK and Australia, it has been investigated which terms people on the AS and their relatives preferred the most. A similar study has not yet been conducted in Finland. It is important to know what terms people on the AS themselves, their relatives and the professionals would like to see used for autism spectrum disorder.

Previous studies conducted in the Netherlands and the United Kingdom have also found that the research themes considered important by people on the AS and their relatives differ from those of funded research projects. A similar survey has not been carried out in Finland before. It is important to raise awareness what kind of research is considered important by people on the AS, their relatives and professionals.

Publications:

Dindar, K., Kilpiä, A., Kämäräinen, A., Pihlainen, K., Pukki, H. & Kärnä, E. (Accepted). Sidosryhmien näkemyksiä autismikirjoa koskevasta terminologiasta Suomessa. [Stakeholders’ preferences for autism terminology in Finland]

Nuojua, J. (2022). Autismikirjon sidosryhmien näkemykset siitä, mitä autismikirjosta pitäisi tutkia [The views of autism stakeholders on autism research needs] (Master’s thesis)