The responses provided by Spectrum 10K to the UK’s health research watchdog have been revealed, following the conclusion of the Health Research Authority’s investigation into the controversial autism DNA study.
The HRA launched an inquiry into the University of Cambridge project – which has faced criticism from the autistic community over proposals they believe amounts to “eugenics” – in September, and recently concluded that its favourable opinion of the study “still stands”.
Liam O’Dell had requested Spectrum 10K’s letter to the HRA’s request for further information while the regulator’s investigation was ongoing, but this was refused under the Freedom of Information Act.
However on Wednesday, this website was provided with the study team’s full response to HRA’s questions, with the investigation into Spectrum 10K now over.
Adults lacking capacity
Spectrum 10K said they estimate “around 200 (2.2%) participants” will identify as being individuals who lack the capacity to provide informed consent, adding they would look to recruit beyond this figure to “ensure sufficient statistical power to detect a significant result when investigating this cohort”.
Explaining their reasoning for including adults lacking capacity in the project, Spectrum 10K wrote: “The inclusion of autistic adults without capacity to consent to participate in this research is important, as it ensures a study population which is fully representative of the autism community, including their diverse support needs.
“We are aware that the support needs of autistic people with intellectual disability differ from those who do not have intellectual disability. We are further aware that researchers are being criticised by the autism community for not including hard to reach groups, such as those who are non-verbal, or those with very profound disability.
“Adults without capacity to consent to complex research studies are under- represented in research, which means that research results fail to reflect the needs of this group, resulting in reduced understanding of their needs, and fewer treatment and support options being developed.
“In the case of Spectrum 10K, one of the primary aims is to understand the biology and genetics of autism; the inclusion of this group will help improve our understanding of the relationship between autism and other developmental disabilities, as well as co-occurring health conditions that may occur disproportionately in that group.”
The 10,000 people recruitment target
With a recruitment target of 10,000 autistic people, the study team explained the number was selected because there are “very few” datasets globally which link phenotypic data such as lifestyle, education, behaviour and social support with genetic data and electronic health records.
“By combining the genetic data with the phenotypic data (including social and environmental data), the Spectrum 10K dataset will help us to better understand the underlying genetics of autism and a wide range of co-occurring health conditions,” they said.
The behaviour of ambassadors
In a letter sent to Spectrum 10K in November, the HRA asked the project team about “allegations that ambassadors have used racist and transphobic language”.
Earlier that month academics had told this website they were “welcoming and respectful of all autistic people, including those who are transgender”.
Responding to the HRA’s request, the Spectrum 10K team said “concerns regarding ambassadors’ online conduct very seriously” and “discussed the situation as a team”.
“We can see that some people interpreted certain posts as racist or transphobic. However, in discussion with the relevant ambassador, we were reassured that this was not the intention. None of the social media posts reviewed were found to contain unambiguously racist or transphobic language,”
They went on to add that ambassadors reported receiving online abuse as well.
They continued: “As well as the importance of ambassadors representing Spectrum 10K respectfully online, the team recognised its responsibility to safeguard the wellbeing of ambassadors. We carefully considered all of these factors.
“In response, we met with the relevant ambassador on more than one occasion to discuss the concerns. We reminded the ambassador that in this role it is important to maintain high professional standards and being respectful.
“We asked them to remove their ambassador status from their social media profiles, in order to distinguish between their private views and those associated with the project.”
The team would later go on to announce the scrapping of the role of Spectrum 10K ambassador, stating in an update in May that it would be “impossible to keep [them] up to date as the consultation progresses, because things can change very quickly”.
“This risks placing ambassadors in a situation where they are asked questions that they cannot answer, simply because we have not had time to bring them up to date.”
‘No published opinions or research’ which contradicts the aims of Spectrum 10K
Claiming aspects of some published articles “appear to have been misinterpreted or taken out of context”, the Spectrum 10K team wrote: “We are aware that some members of the public believe our researchers are seeking a prenatal test for autism as a way to prevent autistic babies from being born in the future. We have categorically stated that this is not the case.”
One article cited by the researchers came from 2009 for the BBC, in which Professor Baron-Cohen said: “Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.”
Spectrum 10K went on to add the article had been “interpreted as meaning Prof. Baron-Cohen was, at the time, in support of a prenatal test and cure for autism”, with a concern “only about the preservation of ‘associated talents'”.
They told the HRA: “In the 2009 article mentioned above he aimed to encourage scientists to question the then widespread assumption that autism needed a cure. He was at the forefront of encouraging scientists and clinicians to question this.”
“Prof. Baron-Cohen clarifies that he has never been in support of a cure for autism or in favour of a prenatal screening test for autism. Indeed, his article in 2000 was one of the first to question why autism was seen as a disorder, disease or even a disability, and argued strongly for recognizing autism as a difference.
“He was the first person to introduce the term Autism Spectrum Conditions (ASC) instead of Autism Spectrum Disorder (ASD), to shift perception away from disease or disorder and towards difference and disability.
“Prof. Baron-Cohen explained that in highlighting how ‘cures for autism’ could also lead to a loss of talents, he was making the point that autism entails both strengths as well as challenges.”
The team referenced another article from 2009 – titled Autism is not cancer – in which Professor Baron-Cohen wrote a pre-natal test for autism could “bring forward the age at which diagnosis is possible”, but warned “there might be eugenic selection against foetuses who might develop autism”.
He also expressed fears that parents might opt to terminate the baby “even though the child may in fact make a good adaptation [to society]” or the other way around, and that “genes for autism may be linked to the genes for talent”, meaning “eradicating the genes for autism may also eradicate the genes for these talents”.
Spectrum 10K also linked to a letter Professor Baron-Cohen wrote in response to an article in The Guardian, in which he stated “if there was a test for autism (and there is none yet), while some parents may exercise their legal right to opt for a termination, I am not in favour of discriminating against a foetus purely because it might develop the condition”.
Concluding their response to the HRA, the project team concluded: “To reiterate, it is important to distinguish seeking a cure or treatment for such co-occurring conditions, which may be wanted as part of medical care, and which the PIs do support, vs. seeking a cure or treatment for autism itself, which the PIs [Principal Investigators] do not support.”
Applied Behavioural Analysis (ABA)
Spectrum 10K went on to state that neither the ARC or Professor Baron-Cohen have any links to ABA – an intervention carried out on autistic people which has been found to increase symptoms of post-traumatic stress disorder (PTSD).
They directed the HRA to an article penned by Professor Baron-Cohen in 2014, in which he described ‘radical behaviourism’ as “scientifically uninformative”, and stated the academic “would see ABA as one example” of this concept.
Dr Daniel Geschwind and Cure Autism Now (CAN)
“It is clear that the aims stated by Cure Autism Now nearly 20 years ago are not in line with the aims of Spectrum 10K,” the study team said. “In addition, while the organisation was committed to broadening awareness and understanding of autism, their choice to refer to it as a ‘disease’ is now out of date.”
They confirmed the ARC had received a grant for approximately £50,000 from CAN in 2002, with one of the research projects funded by this money being a “functional MRI study looking at cognition in autistic people”. A further grant from CAN ended in 2008, and looked at “the role of perceptual attentional disturbances in the early diagnosis of autism”.
In a biography on the Geschwind Lab website, it’s said the organisation has “made significant contributions to defining the genetic basis of autism, starting with the development (in collaboration with the Cure Autism Now Foundation) of the Autism Genetic Resource Exchange an open shared resource for autism genetic studies, now a program of Autism Speaks”.
When approached by Liam O’Dell for comment for Indy100 about his involvement with CAN, Dr Geschwind said: “Cure Autism Now (CAN) was founded by parents of children with autism in the late 90s to fund research and bring attention to autism. CAN was acquired by Autism Speaks and has not existed for over 10 years.”
In comments issued to the HRA, Spectrum 10K wrote that Dr Geschwind had advised them he was working as a junior assistant professor in the “late 1990s” when he met the founders of CAN.
“It became clear that there were complex genetic factors underlying the severe neurodevelopmental disorders and Dr Geschwind wanted to help. Dr Geschwind was asked to be the first chair of the Cure Autism Now Scientific Advisory Board. He also developed and chaired the Autism Genetic Research Exchange, a database featuring data from more than 1,700 families with over 3,300 autistic individuals.
“This close relationship between researchers such as Dr Geschwind and parents/families with autism at CAN was unusual at the time and has played a significant role in driving Dr Geschwind’s subsequent highly patient oriented research and work in autism.
“The title ‘Cure Autism Now’ was meant to bring attention to the condition, start dialogue and discuss what it would actually mean to make progress and develop treatments in this condition.
“The work of Cure Autism Now to help those with the most severe disabilities emerged at a time when very little was known about the condition, very few worked on it and there was certainly not a recognition of those autistic people who value autism as part of their identity, which is a newer phenomenon.”
In 2007, Cure Autism Now merged with Autism Speaks.
Autism Speaks
Responding to a question regarding any links to the controversial US charity Autism Speaks – an organisation considered a “hate group” by many autistic people for its past stances on autism and curing the condition – Spectrum 10K confirmed the University of Cambridge’s Autism Research Centre (ARC) and Professor Simon Baron-Cohen are involved in the AIMS-2 trials backed by Autism Speaks.
“In addition, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks.
“As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which (subject to approvals) will also include data from AGRE,” they added.
AGRE was also developed and chaired by Dr Geschwind, the co-principal investigator of Spectrum 10K.
The full response letter is available to read online.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:
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