The public consultation on the University of Cambridge’s Spectrum 10K project, which looks to “investigate genetic and environmental factors” which contribute to autistic people’s wellbeing, will take place “from mid-January to the end of February”.
It comes after the study team and the independent community engagement agency Hopkins Van Mil (HVM) missed their initial consultation launch deadline of September or October this year.
While Spectrum 10K declined to comment further when approached for comment in mid-September, HVM told Liam O’Dell last week that the second phase of the three phase consultation process – co-designing the consultation – concluded on 31 October.
In their last public update released back in May, Spectrum 10K confirmed the first phase, which saw individuals determine the co-designers, was carried out between December 2021 and February 2022.
29 people – 23 of whom were autistic and six were non-autistic parents or carers, clinicians, or charity representatives – participated in this stage, which comprised eight Zoom meetings between HVM and “one and six participants”.
A report was also published by HVM following the first phase’s conclusion, in which principles for the Phase Two co-designers included there being an “agreement that if you are involved in the co-design you will not prevent the process moving forward to the consultation phase”.
Spectrum 10K summarised the principle in their update as meaning “those involved should agree to participate to improve the study, not stop it”.
This is despite HVM’s publication also stating “those who have been critical of the study should be involved in this process”, with one Phase One participant telling the consultants: “Critics are so important in order to ensure the highest standards are met.
“Criticism pushes research forward, improves processes and outcomes,” they said.
In an update shared on Thursday, HVM and Spectrum 10K revealed the Phase Two participants were 95 autistic people (including those with learning disabilities and some who are themselves parents of autistic children), 16 non-autistic parents or carers, and the Spectrum 10K team.
Individuals took part in discussions and workshop activities in a dedicated online space, one-to-one interviews and in meetings, they added.
The update continues: “The Hopkins Van Mil team, including Leneh Buckle, are now reviewing everything that was said in Phase Two. HVM will draft a report by mid-November.
“The report will contain the recommendations from those who took part in Phase Two on how the consultation should be run and designed. It will also contain a fuller explanation of what was discussed during Phase Two.”
A timeframe for publishing the report states the draft report will be shared with Spectrum 10K next Tuesday, before being shown to Phase Two participants on 21 November “to ensure it reflects their views properly”.
The 21 November will also see the beginning of planning for the Phase Three consultation process based on the report’s findings, and publicity around taking part in the consultation.
Meanwhile, amendments and comments from Phase Two participants will be integrated into the report from that stage in the week commencing 5 December, before being published on both HVM and Spectrum 10K’s websites on 9 December.
The actual consultation will take place “from mid-January to the end of February next year” in order to “give the planning and publicity phase appropriate time”, HVM and Spectrum 10K said.
The consultation with the autism community was announced in September last year, and follows concerns from autistic advocates that the project amounts to “eugenics”.
Cambridge’s Autism Research Centre has said it is “ethically opposed to any form of eugenics”, while the researchers insist Spectrum 10K “does not intend to find a cure for autism and does not want to eradicate autistic genes”.
However, in a statement announcing the study would be paused to carry out the consultation, principal investigator Professor Simon Baron-Cohen admitted his team could “see that we need much wider consultation”.
“[The pause] will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K,” he wrote.
Update – 11/11/22: Hopkins Van Mil have confirmed to Liam O’Dell that co-designers in Phase Two of the consultation process are being paid for their time.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.
Liam O'Dell 