A controversial research study into the genetics of autism – which was paused in September following a backlash from the autistic community – could re-launch as soon as next month, newly released meeting notes have suggested.
The minutes of the ‘Spectrum 10K PPI Meeting’ on 28 September, obtained from the University of Cambridge under the Freedom of Information Act, detail information about the study’s consultation with the autistic community which it announced alongside the break in the project.
It reads: “[Redacted] advised that [redacted] will be working on the limits of consultation document this week.
“[Redacted] have prepared a timeline for the process and expect that the consultation process will take two to three months.
“As there will also be submissions to ethics for substantial amendments, it is envisioned the process will take at least six months and at present, it is expected that we will re-launch in May 2022.”
This website is unable to confirm the potential re-launch date with Spectrum 10K, as researchers told this website last month they “cannot continue to respond” to Liam O’Dell’s enquiries.
“One outcome from Phase 1 of our consultation was the importance of keeping the momentum going on Phases 2 and 3. Therefore, we have now decided that we need to prioritise consulting with the wider autism community.
“With regret, we cannot continue to respond to any further requests,” they said.
However, Spectrum 10K have not provided an update on their consultation since October, when they detailed the three phases involved in the process and confirmed they were having “initial discussions” with the independent consultancy firm Hopkins Van Mil (HVM).
Professor Simon Baron-Cohen of the University of Cambridge wrote on behalf of the Spectrum 10K team and said the first phase would involve working with “approximately 15 to 20 autistic people (and some parents/carers)” to decide who should co-design the consultation.
Once agreed, the co-designers will work on it in Phase Two and ensure autistic people “from a wide range of backgrounds” are consulted, before the consultation runs in Phase Three.
Professor Baron-Cohen continued: “The initial plan is that Hopkins Van Mil will help with Phase One and possibly Phase Two. Facilitation of Phase Three, the consultation itself, will need to be decided upon as part of the co-design process.
“We will continue to provide updates as this plan progresses.”
In January, this website revealed Phase One included a Zoom discussion carried out by HVM on 24 January, with autistic adults invited to take part in a two-hour long confidential call “with one or two members of the Hopkins Van Mil team and up to five other autistic adults”.
Two months later, on 10 March, a Spectrum 10K spokesperson told Liam O’Dell they “expect to publish an update” on the consultation’s development “within the next month”, but it is yet to provide one.
Fears autistic campaigners will “circumvent” the consultation
Elsewhere, the University of Cambridge documents revealed concerns from the panel that there was a “high risk” of autistic people looking to “circumvent” the consultation.
One note from the 28 September meeting reads: “There are a few people who want to volunteer to circumvent any input into the consultation – don’t know how to weed those out – high risk of this.
“Are rules in place that can expel a person?”
The comment was one of several remarks questioning the criticism from autistic people, with one panel member commenting “a lot of the response on social media does not seem to be authentic autistic voices”.
Another note states the panel “questioned whether the people who have publicly criticised the study were speaking out on behalf of the whole spectrum or not”.
“Some panel members suspect that there is likely to be an unrepresented section of the community that perhaps have not been as vocal,” it adds.
Earlier that month, on 9 September, the panel discussed the study team’s decision to pause Spectrum 10K, with members saying a “clear benefit” of the project was to “stratify care needs more carefully and to add to the dimensionality of autism”.
“They added that it would be beneficial to move away from the stereotypical and simplified system of understanding autism (high, medium, low support for example),” the note continues.
The panel also floated the idea of an information banner being added underneath online posts which mention Spectrum 10K, in a bid to tackle misinformation.
“A suggestion was to implement the Covid information feature on platforms such as Instagram. In our case, we could provide factual information under posts that mention the study,” the document reads.
Internal staff emails brand journalist’s articles as ‘pernickety’
Just days after receiving the meeting documents under the Freedom of Information Act, Liam O’Dell obtained internal messages and emails from Spectrum 10K researchers which discuss his reporting on the project.
The correspondence was secured from the University of Cambridge as part of a Subject Access Request under the Data Protection Act, which entitles individuals to receive a copy of information held about them by a third party.
In one email conversation between members of the Spectrum 10K study team and staff from the Autism Research Centre, sent on 4 October, individuals referenced this website’s report on the project team’s submissions to the ethics committees.
Asked if “anyone [wanted[ to respond to this”, another person responds to the email and says: “I think if their main criticism is re costs of autism to the society, it’s fine. It’s becoming quite pernickety and we just need to ignore it.”
Earlier that same day, another email claimed the aforementioned article “makes a number of statements which are taken out of context”.
Other correspondence provided to O’Dell shows staff at the Health Research Authority (HRA) reach out to Spectrum 10K following the publication of another article in October.
After this website revealed officials at the HRA had criticised the study’s “messy” ethics application to two ethics committees, the organisation emailed Spectrum 10K on 14 October and said: “I just wanted to contact you in order to provide some clarification around the language used as the description in the article does not provide an accurate reflection of the correspondence which is being referred to.
“I wanted to contact you as soon as possible to keep you informed and to reassure you that this was not a direct reference to the Spectrum 10K study.”
Two months later, a message sent on Microsoft Teams commented on planned responses to this website’s enquiries and said: “I think all the questions are answered, they just might not be the answers LOD is looking for. I’m hoping he publishes them in full as I think he may take a couple of sentences out of context.”
In another email sent on 17 January, a Spectrum 10K researcher comments on this website’s report from January of a phase one Zoom call taking place at the end of that month.
They write: “He has slightly got the wrong end of the stick about an advertisement that we placed on the NIHR People in Research site to help Hopkins Van Mil find a few more autistic people for one of the meetings.
“Liam has interpreted that as meaning that phase 1 starts on that date. The misunderstanding is not significant and will be clarified in a few weeks when we go public with the outcome of phase 1, so I suggest we do nothing for now.”
However, no further update on the consultation has been provided since October 2021.
The 33-page document also goes on to reveal internal discussions around Spectrum 10K’s decision to “disengage from the journalist” reporting on the study.
On 31 March, a member of the project team wrote to the Central Communications Office at the University of Cambridge and said: “The Spectrum 10K team has continued to respond to ongoing journalist requests from Liam O’Dell, who writes for his own online blog, rather than for an external publication.
“These requests are taking up a lot of team time and are impacting on the team’s ability to meet other important deadlines. There have been approximately 11 requests since October and each requires multiple team members to collect and review responses.
“In order to focus on running the Spectrum 10K consultation, the team would like to advise Liam that it will no longer be possible to respond to his requests.
“Do you have any concerns about that approach? We recognise that this will lead to some negative comments online, but this could be considered an acceptable risk.”
The communications officer at the university replied: “I think this is entirely legitimate and is a strategy we have been forced to use with more high profile journalists before now.
“I think your response reads well. He will undoubtedly use this to further criticise Spectrum 10K, though I would hope in the interests of fairness he will at least quote your response.”
This website provided Spectrum 10K’s refusal in full on 31 March.
While no payment is expected or necessary to access this content, if you would like to support Liam’s independent journalism, you can send a tip via CashApp.
You can also sign up to Liam’s newsletter, where he will share updates on his first non-fiction book which is due to explore the subject of autism research in detail.
This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:
Liam O'Dell 