Spectrum 10K: Questionnaire asks parents of children as young as four about mental health issues and abuse

Content warning: Brief mentions of alcohol abuse, suicide, self-harm, mental health issues and sexual abuse. Please do not read this article if you find the above subject matters triggering or distressing.

A voluntary questionnaire for the controversial Spectrum 10K study asks parents of children as young as four if their autistic child regularly consumes alcohol, has attempted suicide or been in trouble for inappropriate sexual behaviour – Liam O’Dell can reveal.

The optional form on vulnerability and resilience, which focuses on children aged 4 to 15, also asks if a child has a criminal record or has been sectioned because of a mental health condition.

An introduction to the questionnaire reads: “There are 44 questions in total. These questions pertain to education, social support, finances, interaction with the social services, interaction with the law and police, abuse and bullying, and mental health and self-harm.”

A separate voluntary form for adult participants – which, in addition to the other questionnaire, were obtained under the Freedom of Information Act – asks individuals whether they have been sacked from a job, had possessions removed by debt collectors, had children referred to social services or been humiliated by a partner.

Many autistic individuals report life-experiences that are different from non-autistic individuals. We want to better understand this,” the document reads, adding that the form has 63 questions in total.

For both questionnaires, the study team write that they “do not provide feedback”.

When asked by Liam O’Dell why the information was requested as part of a study into the genetics of autism, a spokesperson for the study said: “Spectrum 10K is not only about genetics, but aims to  investigate genetic and environmental  factors that contribute to the wellbeing of autistic people. These questionnaires would fall under environmental factors.

“One example is the Vulnerability Experiences Quotient (VEQ), which was developed by our team at the Autism Research Centre in Cambridge and was published in 2019. It was the first comprehensive study to document vulnerability in 10 areas of everyday life in autistic people.”

Meanwhile, in a statement to this website, a HRA spokesperson confirmed they have received a response from the Spectrum 10K study team to their latest enquiries.

“It came in [on 31 January]. We compiled all of the points raised by the complainants, and the feedback from our REC, and the study team has responded on all points, meaning we have a lot of information to work through. This is likely to take some time.

“We’ll let complainants know whether we’ll be able to provide a full and final update by mid-February as planned, or whether we might need more time,” they said.

This website asked Spectrum 10K if they would be willing to provide Liam O’Dell with a copy of their response, but they declined to do so.

A request has since been filed with the HRA to obtain the document through the Freedom of Information Act.

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.

This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:

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