Apply now for the consultative group of the Autism Innovative Medicine Studies-2-Trials (AIMS-2-TRIALS), the largest research grant ever given for neurodevelopmental conditions (115 million euros), funded by the European Union and controversial US charity Autism Speaks, among others. The international consortium is co-led by Roche, the Swiss pharmaceutical company developing a drug to "treat" the core symptoms/characteristics of autism. Those who can stand the medicalized view of autism that will be perpetuated throughout this may wish to apply to become an Autism Representative (A-Rep), to be involved from now until May 2023. Along with parents and carers, applications from actually autistic people are invited by the coordinators, UK charity Autistica and Cambridge University. They say applicants should be from the EU, but may also consider Switzerland, the UK, and possibly other non-EU countries (many funders and lead/partner organizations/universities are currently or after Brexit based outside the EU).
The steering committee selecting the A-Reps includes both Vice Presidents of parents' organization Autism-Europe (one of them one of the few autistic people in its structure) and is unlikely to be welcoming to critical independent autistic self-advocates. There is no information on who selected this steering committee, which "will also be a core part of the eventual group" of A-Reps. We do not expect any more transparency about the further selection process. Seeing how exclusionary the requirements for A-Reps are, we certainly have no trust in the steering committee that came up with these requirements.
Applicants have to be able to participate in telephone or video calls, which will exclude many actually autistic people (although the AIMS-2-TRIALS website also mentions the possibility of "an online forum depending on the preferences of members"). While saying that they "aim to ensure [...] diversity [...], including [...] people with different levels of language ability", all applicants will need to speak (not just write) English ("Show proficiency in spoken and written English"), which will exclude many more, and they will need to be able to make themselves heard over the voices of parents and carers (both metaphorically and literally).
They invite representatives of "membership organisations", but exclude groups organized informally, like much of the autistic self-advocacy movement, due to the requirement that "Those people [...] should represent organisations that are well-established [i.e. not organized primarily on Facebook or Twitter], have a significant [formal] membership (more than 20) and have clear processes for decision making [i.e. focus on form over substance]". And while these membership-based A-Reps are supposed to represent their communities (such as autistic people), they are not actually permitted to seek those people's input as "All documents, content of discussions and outcomes of [research] applications are confidential and must not be disseminated or discussed with others". A-Reps are also not allowed to freely publish their views, as "We have the right to check the material before it gets published and remove anything that would have a bad effect on our research efforts, break confidentiality, is not accurate [in their view], or goes against the aims of the project".
They offer payment, but only up to an hour in preparation of each meeting. Should you be autistic and require more time to prepare, it's on you. Some A-Reps may be invited to participate in physical meetings, but again, selection is entirely intransparent.
For some critical background on AIMS-2-TRIALS from an autistic perspective, you may want to read these posts by the Participatory Autism Research Collective:
https://participatoryautismresearch.wordpress.com/2018/07/23/some-questions-about-aims-2/
https://participatoryautismresearch.wordpress.com/2018/09/18/autism-innovative-medicine-studies-2-trials-project-faq/
Autism Representatives page on the AIMS-2-TRIALS website:
https://www.aims-2-trials.eu/about-us/team/autism-representatives/
Recruitment form:
https://www.smartsurvey.co.uk/s/A-Reps/
Role description:
https://autistica.sharepoint.com/Shared%20Documents/Forms/AllItems.aspx?id=%2FShared%20Documents%2FGrant%20Management%2FPartnership%2FAIMS2TRIALS%2FA%2DReps%2FRole%20description%20A%2DReps%20final%2Epdf&parent=%2FShared%20Documents%2FGrant%20Management%2FPartnership%2FAIMS2TRIALS%2FA%2DReps&p=true
Deadline: 25 March 2019