The organisations are also mentioned in a second – though not final – draft of Spectrum 10K’s Frequently Asked Questions (FAQ) document, which details new examples of what participant data could be used for, what commercial products could be developed from the study and more.
At the end of the file, obtained by Liam O’Dell from Medway NHS Foundation Trust, seven charities and charities are listed by Spectrum 10K researchers which can “offer support and advice on autism and mental health” for participants.
One listed by the DNA project is Child Autism UK, which says on their website that “under their previous name ‘Peach’ we were instrumental in establishing ABA in the UK”.
“We have a very dedicated team that continues to provide excellent ABA Services, and information and advice to parents,” they add.
The website also says: “We provide services to enable children to overcome difficulties with communication, learning and life skills and give families the techniques and strategies to cope with autism through the use of Applied Behaviour Analysis (ABA).
“Although there is no cure for autism there are treatments and courses of support that can be put in place.
“Applied Behaviour Analysis (ABA) is the technique used by Child Autism UK. ABA used within a properly designed programme at an early age can help transform the lives of children with autism and their families.”
ABA as therapy for autism has been widely condemned as a harmful practice by autistic advocates, with a 2018 study finding evidence of increased PTSD symptoms in those exposed to ABA.
When asked by Liam O’Dell if Spectrum 10K endorses Child Autism UK and ABA, a spokesperson for the study said: “Under our ‘useful links’ section, we listed the largest autism-related charities in the UK. Entry in this list does not represent an endorsement by Spectrum 10K but we acknowledge that this may not have been clear and have decided to remove the page from our website.
“We do not endorse Applied Behaviour Analysis, as we recognise concerns about the approach. We would like to see more research conducted to explore alternative approaches.”
Another charity listed by Spectrum 10K in the draft document is Autism Independent UK – which also gives its name as ‘The Society for the Autistically Handicapped’ on its website.
On the inclusion of Autism Independent UK in its draft document, the Spectrum 10K spokesperson added: “As above, we have decided to remove this page from our website. According to Google, Autism Independent UK used to be called The Society of the Autistically Handicapped. Clearly, this language is out of date. We do not use the term ‘handicapped’.”
However, at the time of writing, the two organisations are still currently listed on Spectrum 10K’s website under its ‘autism advice’ webpage.
Alongside 15 initial NHS Trusts listed as taking part in the Spectrum 10K study, a further 20 were identified in an amendment filed with the Health Research Authority – with one of them being the Sussex Partnership NHS Foundation Trust (SPFT).
In correspondence sent by the Trust in September – obtained by Liam O’Dell under the Freedom of Information Act – a member of the organisation’s clinical research team informed Spectrum 10K researchers that they had received feedback from “a number of experts by experience” expressing their wish not to move ahead with the study at SPFT.
The Clinical Research Team Leader at the Trust wrote: “I had enquired about whether there were concerns raised that could be addressed by your study team, however, they have said that the feedback is categorical. As such, we are sadly going to have to take the decision not to proceed with the study at SPFT.”
Acknowledging the site’s withdrawal, the Spectrum 10K Study Coordinator said they were “sorry to hear” the news and that the “majority” of the public response to the project has been “extremely positive”.
“We have encountered some queries on social media and by email which we are keen to address. Some posts within Twitter have been negative and inflammatory, and it is important that we address the queries being raised. In response to this, we have provided a statement on Twitter, on our website and email, and we are in the process of updating our FAQs, along with our PIS and Consent form.
“I don’t know if you are happy to share some of the feedback raised by experts by experience […]? We would appreciate their perspective it as it will help us to continue to strive to address concerns.
“It is of utmost importance to Spectrum 10K that we are clear in our messaging and communication,” they said.
In an additional comment issued to Liam O’Dell, a spokesperson for the project said: “The team is disappointed in the [Trust’s] decision but respects it.”
SPFT wasn’t the only NHS Trust to raise concerns over the study, with one email from Leicester Partnership NHS Trust (LPT) – also sent in September – revealing they applied a “temporary pause” to their running of the Spectrum 10K study following “anxieties” being shared by clinical staff.
Following a site information visit by the research team, a member of the trust’s research team wrote: “As we briefly discussed during the meeting, we understand there is apprehension and anxiety amongst parts of the autistic community with some aspects of Spectrum 10K, especially on social media.
“These anxieties have inevitably been picked up by some of our clinical staff, who have expressed some concern about our potential involvement, and the impact on their relationship with patients as a result.
“We heavily rely on such clinical staff to help us identify potential participants across all of our research studies, so need to maintain a positive relationship with them, and wish to ensure that this is in place for Spectrum 10K to maximise our potential contribution to this important work.”
The individual went on to add that while the research team was assured following the visit, they felt it would be “unwise” to go ahead with the project and “ignore our clinical staff’s concerns and anxieties without addressing them”.
They continued: “We are hoping to run at least two other autism-related studies within the Trust in the next few months, and we therefore need to ensure that support for all of these within the services is not compromised.
“We met for a debrief after the SIV to discuss the best way forward to manage this situation, and have decided on a brief pause before launch, whilst we speak with our clinical staff, as to the true extent of this anxiety, and as to the best way to provide assurance to them and answer any questions they, patients, families and carers may have.
“We are conscious that at the moment, trying to recruit whilst patients and staff are expressing their current levels of anxiety may be counter-productive, and hope that with assurance, we will be in a better, calmer place to begin successfully recruiting to Spectrum 10K in the very near future.”
Liam O’Dell presented a comment to an LPT spokesperson, who said in response: “During the local planning stages for the Spectrum 10k study, we had some concerns following negative social media activity, of the effect this may have on patient relationships.
“The study was not formally initiated locally and paused on the request of Spectrum 10K, alongside the national suspension. It is still on pause and we await details of any new study so that we can properly evaluate them before making any decision.”
Asked if the decision to pause enrolment at LPT was a decision by Spectrum 10K or the Trust, the spokesperson went on to clarify that the study was “paused nationally, with the central study team asking all potential sites to stop all activity with immediate effect”.
“This also included ensuring that the national website was closed to new applicants.
“The decision to pause nationally, was made because of a number of reservations and requests to pause being made by potential NHS Sites involved, including ourselves (as well as the social media reaction),” they added.
In a separate message to East Sussex and North Essex Foundation Trust, the researchers told medical professionals to “hold off” posting about the study on social media due to the project “experiencing a bit of social media backlash – on Twitter in particular”.
“What a palaver”
After receiving news from Spectrum 10K that the study would be paused following online feedback, one staff member from Bridgewater Community Healthcare NHS Foundation Trust wrote: “What a palavar [sic] – you would thought they would have ironed stuff like that out in a consultation phase!”
In response to this comment, the Spectrum 10K spokesperson said: “It is regrettable that the concerns raised about Spectrum 10K were not identified during our engagement with autistic people prior to launch.
“However, now that the concerns have been raised, we welcome the opportunity to address them.”
In a section providing examples of research which could be conducted using participants’ genetic data, researchers said the information could help them to “[understand] if specific sets of genes contribute to epilepsy in autistic individuals and [understand] if different genes associated with epilepsy contribute to different types of epilepsy”.
They added another example was that it could help with “identifying genes that may contribute to severe gut issues in autistic individuals, and developing therapies for these gut issues which are informed by genetics”.
The file goes on to give examples of findings that Spectrum 10K questionnaire data or information from participants’ medical records could uncover, including “identifying which physical and mental conditions are more common in autistic individuals compared to their non-autistic family members; understanding what factors contribute to self-reported quality of life in autistic individuals [and] investigating if camouflaging and masking contribute to depression and anxiety in autistic individuals”.
The draft document, labelled ‘Spectrum 10K Website FAQs V2.0’, also shows tracked changes where a line stating participants “have the right to access any information we hold about you” has been deleted.
The Spectrum 10K spokesperson said in a statement to Liam O’Dell that the study team understands that “mental health, masking/camouflaging, and the interactions between them are important to autistic people”.
They added: “It is therefore valuable to increase the evidence base in this area with a larger dataset and in combination with other variables.
“[The line about the right to access any information] was removed from this particular draft version of the FAQs because it was not quite accurate.
“Full details about data access had already been made public in official study documentation, for example in the Participant Information Sheets:
“Your rights to access, change or move your data are limited, as we need to manage your data in specific ways in order for the research to be reliable and accurate. To safeguard your rights, we will use the minimum personally-identifiable data possible.”
“We expect to discuss data access, and how we could communicate more clearly about it, in our consultation,” they said.
The same draft FAQs go on to elaborate on commercial collaborations between organisations and Spectrum 10K, with researchers saying any partnership “will be in line with the aims” of the study.
“Some examples of such collaborations may include developing a drug for to alleviate a specific type of epilepsy or gut difficulty which may be relevant to some autistic individuals.
“Another example might be to develop an algorithm to detect depression in autistic individuals. Such research is typically conducted during commercial collaborations,” they continue.
When asked why this algorithm is needed, and how it would go beyond current screening questionnaires for depression, the Spectrum 10K spokesperson said: “This example was based on our understanding that mental health is a priority for autistic people. However, we would like to reiterate that this was provided as an example of potential commercial collaboration in the future, and that Spectrum 10K has no commercial collaborators, nor plans to commercialise any of the research.
“Any future commercial collaborations would be subject to approval by the Data Access Committee, and the procedures for this will be discussed during the Spectrum 10K consultation.”
Health Research Authority conclusion “in the next couple of weeks”
The Health Research Authority (HRA), which launched an investigation into the controversial autism study following complaints, has told Liam O’Dell that “our investigation is still underway at the moment”, adding they “do hope to have a conclusion in the next couple of weeks”.
A series of issued raised by the research regulator were revealed by this website in November.
Spectrum 10K’s consultation
Commenting on the progress of its consultation, announced late last year, the Spectrum 10K spokesperson revealed they “expect to publish an update” on its development “within the next month”.
The first phase of the consultation, led by the independent organisation Hopkins Van Mil, began at the end of January.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below: