Large controversial autism research projects should engage with the Autistic community from the conception stage. This rarely happens. Instead they tend to create shiny websites and consultation exercises which cannot change the fundamentals of the project. These are essentially marketing materials mainly aimed at convincing some Autists (or their parents) that they should participate.
To be able to properly understand and critique what the projects really are, what the researchers have signed up to, one needs access to the grant agreements that establish what the projects are funded to do rather than to their marketing websites and interviews. Unfortunately the researchers appear to want to hide what they plan to do and do not publish these, even when asked for them.
The solution: request these grant agreements using Freedom of Information laws. By requesting, eventually obtaining and then publishing these grant agreements on my personal website I’ve tried to shine a light on what these projects are really about. Even after I’ve published these grant agreements the researchers have not published them on their official project websites nor linked to them.
Ideally, the grant agreements of all large (say above one million pounds, dollars or euros?) autism research projects should be published in full in a central repository, at the start of the projects, as a condition of the funding.
The, often desperate, attempts to hide these grant agreements is at best suspicious. Early access to the grant applications would also give a better chance to stop the more dangerous projects before they progress to the point the project’s inertia is too strong.
I’ve consolidated links to all these documents on this page. If you want to learn more about these projects you can check their grant agreements for yourself.
Documents obtained under Freedom of Information:
Related blog posts:
The Spectrum 10K website is at https://spectrum10k.org
Documents obtained under Freedom of Information:
Related blog posts:
The AIMS-2-Trials website is at https://www.aims-2-trials.eu