This article is unlike the many others I have published on the controversial autism DNA study known as Spectrum 10K since October 2021.
These pieces of investigative journalism, or, as Spectrum News so kindly described it recently, these “numerous Freedom of Information requests” and “blog posts […] that ripped apart [researchers’] credentials and incorrectly summarised their work”, were balanced news reports which always sought to obtain a right of reply from Spectrum 10K and provide clarifications when required.
This piece you’re reading, however, is different. It is not balanced – because I’m telling you to respond to Spectrum 10K’s consultation and make it absolutely clear to the researchers that the study must be shut down completely.
The survey link is online now and will be until May (I believe – rather helpfully they say conflicting things on the Spectrum 10K website and the actual consultation itself about when it will close), and for ease, here’s a step-by-step guide on how to respond, along with some information you can draw upon in your answers.
First, you will have a choice as to which version of the survey you want to complete: the easy read survey, the detailed survey, the brief survey, or something else. If you are able, I’d suggest filling out the detailed survey.
Note that you have to be based in the UK to complete this survey (international folks reading this, a share of this article with friends who live here would go a long way), so select the relevant country when that option is presented to you.
About you
These questions should hopefully be self-explanatory and are, of course, personal to you, so complete them with the necessary information.
Improving the Spectrum 10K study
On this page, you will be presented with two sliders to drag to the position you feel represents your stance and attitude towards both genetic autism research, and the Spectrum 10K study.
For genetic autism research, choose whichever option sums up your feeling towards it. In my case, I went for ‘-1’ or ‘somewhat negative’, as while genetic research can open up new discoveries around co-existing conditions which is incredibly valuable, we’re still at a point whereby genetic research on autism is met with a large amount of apprehension and distrust, because of eugenics and/or the persistent desire to find the ’causes’ of autism.
For Spectrum 10K, I’d recommend moving the slider all the way to the left and choose very negative (-2). It’s imperative that the study team are aware of the sheer scale of discontent and anger within the autistic community and allies who stand with them when it comes to this study which, plain and simple, plans to find out the “causes of autism” and the “biological correlates” of the condition – even when their website suggests a different objective entirely.
For the question around whether you think it is possible for Spectrum 10K to be improved, select No. The study team and independent consultants Hopkins Van Mil have approached this consultation process with the overriding view that the project is just in need of some improvements, and hasn’t given proper consideration to the fact that the response to this consultation might be a resounding ‘no’ to the study continuing. This is our opportunity to express our discontent.
Where it asks you if you have anything else to add, you can leave this blank, or explain why you think this study is beyond saving. To be incredibly succinct – in a way which doesn’t do justice to the many problems with Spectrum 10K – so many issues remain around personal data, the previous work of researchers, the potential commercialisation of genetics data, the lack of involvement of autistic people and more, that the study is completely unworkable and unethical, and must be shut down.
For the statement where it asks you to either agree or disagree to continue with the consultation on the understanding that it designed to improve the study, I’d recommend selecting I agree.
Unless you want to make a pretty strong statement, or don’t feel confident explaining all of the issues with the study (in which case select ‘I disagree’ to end the survey), selecting I agree allows you to continue with the survey. You can then answer the remaining questions from the mindset of why it is impossible to improve upon the outstanding issues affecting the project – something which is a bit hard to do in the previous textbox question when you haven’t even been presented with the full range of problems and Spectrum 10K’s responses to them.
If you are then given a choice about which version of the survey you would like, please select the detailed survey to fill out, if you are able.
General information about the study
Here you’ll be presented with a list of tickboxes and sections you can share your opinions on. I’d recommend selecting all of them.
Sources of funding and motivations of funders
Feel free to leave any comments in this section as you see fit. In my reporting on Spectrum 10K and Boycott Spectrum 10K’s statement, no issues or concerns have been identified around the Wellcome Trust’s funding of the project.
Research team
It should be noted that in this section, the summary of the full statement from Spectrum 10K researchers addressing these concerns does not mention the concerns raised around Professor Daniel Geschwind of UCLA, specifically regarding his prior involvement in an organisation known as Cure Autism Now, which has since been merged with the controversial US organisation Autism Speaks – often branded a “hate group” for its persistent negative framing of autism as a condition.
Spectrum 10K’s full statement on the makeup of the research team states Professor Geschwind “chaired Cure Autism Now’s scientific advisory board as a neurologist” in the 1990s and was not funded for his involvement with CAN.
“Daniel Geschwind shares the values of the rest of the Spectrum 10K team. He acknowledges that language, concepts and priorities of the autism community have changed over the past 30 years,” it states.
However, there’s no indication that Professor Geschwind has sought to distance himself from Cure Autism Now and the problematic nature of the now defunct organisation. In fact, only in September did Professor Geschwind credit his past work with CAN during an interview with Spectrum after accepting an award he had won.
Boycott Spectrum 10K have also shared a previous comment from Professor Simon Baron-Cohen – Spectrum 10K’s principal investigator – in which he said “autistics lack the quintessential part that makes us human”, and remarks from Professor Geschwind where he said “[autism] involves dysfunction in social cognition, language ― the things that are really part of what makes us human”.
Spectrum 10K state in this section of the consultation that the research team cannot be changed, and it’s important to emphasise in comments section of this part of the survey that because of that, autistic people cannot trust the researchers involved. However much the study team may wish to distance themselves from past comments, it is completely impossible for the autistic community to be fully confident that team members no longer hold these harmful views about autism.
Autistic involvement in the original design of the study
In its statement addressing this particular concern, Spectrum 10K make a damning revelation: “no autistic people were involved in the design of Spectrum 10K prior to the Wellcome Trust providing funding for the project”. After that, an advisory panel of 9 people (of which just 3 were autistic adults) was set up to form the creation of the study protocol and review study questionnaires.
Spectrum 10K states, like the previous section of the survey, that changes can’t be made to prior levels of autistic involvement in the study (for obvious reasons, of course – it’s been and gone).
Things you could mention here: this failure to include autistic people at the very start of this process goes against a fundamental principle concerning health and social care research.
Principle 4 of the UK Policy Framework for Health and Social Care Research – last updated in January this year, but in a version as far back as 2017 – states “patients, service users and the public are involved in the design, management, conduct and dissemination of research, unless otherwise justified”.
No justification has been given for Spectrum 10K’s utter failure to include autistic people from the very start, and tacking on community involvement in later stages of the process is insufficient, and will not go far enough to address the underlying ethos at the heart of this study from its inception, which was created by solely non-autistic researchers.
The study team has also compared autistic people – the very group they want to recruit – to “trolls” after they voiced concerns about the study. This can only cast doubt on Spectrum 10K’s plans to suddenly be more inclusive of autistic people at this late stage. Not only that, but they expressed their regret at this appearing in one email, only for yet another email containing this language to surface a short while later. Why couldn’t they be completely transparent about the number of times they used this language in correspondence in the first instance?
Similarly, one member of their PPI panel at their meeting in September 2021 claimed “a lot of response from social media does not seem to be authentic autistic voices”. How can we trust Spectrum 10K to listen to our concerns and meaningfully involve us in later stages when they brand us “trolls” and question the authenticity of our opinions if they do not like them?
Inconsistency about the aims
In a summary provided under this section, Spectrum 10K concede that the “aims on [its] website are not exactly the same as in the grant application”. They blame this on the fact that they applied for the money “a long time ago”, that wellbeing was added after consulting their advisory panel, and that the study’s website is “written for the public so it uses a different language than the application for funding”.
The full statement from the study team states: “No members of the research team have published opinions or are conducting research that contradicts the aims: “Spectrum 10K aims to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families.”
For the question around whether you think the study aims are clear, I’d recommend selecting strongly disagree.
Things you could mention here: An email obtained by Liam O’Dell from Spectrum 10K to Coventry and Warwickshire Partnership NHS Trust explicitly stated the study is being conducted “to identify the causes of autism, both genetic and environmental”.
The unredacted grant submission to the Wellcome Trust, secured by autistic researcher Panda Mery and shared with this website, said the study looks to establish “which tissues, gene-sets, cell types and developmental periods are enriched for a “genetic risk” of autism.
While the study team may end up disputing whether these comments are technically “published” remarks, both of these revelations completely undermine Spectrum 10K’s response to these concerns. In the case of the “causes of autism” comment to one NHS Trust, this was made after the grant application was submitted, so the argument that this concerning language was only confined to that application does not stand up to scrutiny.
When asked about the changes which could be made to the study to make the aims clearer, you could suggest Spectrum 10K explicitly state that the study looks to find the genetic causes of autism. For the researchers to deny this, when some of their own staff have described the project as such, would undermine their own colleagues and further sow distrust in the study, demonstrated they do not have the confidence of the autistic community.
For the section where it asks if you think the study aims are ethical, I’d recommend answering Strongly Disagree.
Things you could mention here: Conducting research into the causes of autism is a very slippery slope towards eugenics and the prevention or eradication of autism completely (the Spectrum 10K team stress they are ideologically opposed to eugenics). Even Professor Baron-Cohen himself once said “there’s no way that we can ever say that a future political leader or a scientist won’t use [genetics] research for eugenics”.
For the section where it asks if you think the aims of the study will not cause harm to autistic people, I’d recommend answering Strongly Disagree.
Things you could mention here: There’s a bit of crossover with the last question in this part, as effectively this question is the section where you underscore why research into the causes of autism can contribute to eugenics, and why that’s a harmful prospect to autistic people.
For the section asking to what extent you agree with Spectrum 10K’s aims, I’d recommend selecting Not at all.
If you have any additional comments or questions about the study, then of course leave these in the respective sections. In the questions section, I asked why the study team is continuing to present project aims which are different to what researchers have said in their grant application and in emails to NHS trusts.
Potential benefits to autistic people
The Spectrum 10K team have already made it perfectly clear that there are no benefits to autistic participants taking part in this study. They add the potential findings from their project could be used by other researchers “to help autistic people”, but when the study concerns itself with finding out the genetic causes of autism, the possible ‘benefits’ are non-existent.
When it asks if you think the potential benefits are clear, I’d recommend selecting Strongly Disagree.
If you have any additional questions or comments in this section, do add them.
Things you could say here: I asked how discovering the causes of autism could be ‘beneficial’ to other researchers other than in terms of ways to prevent autism. They said they will establish a data committee to determine future usage, but this could still occur from the published paper alone, and if the committee only ever rejects eugenicist research, then what exactly is the point – or rather, benefit – of all that?
On how to make the benefits clearer, you could say they need to be explicit in stating the disadvantages to the research alongside what they perceive to be the ‘benefits’ – and that is that they cannot guarantee their research won’t be used for eugenics.
Aim to look for genetic subgroups
When it asks for select the co-existing conditions you consider to be important, I’d recommend answering this how you please. Some autistic advocates have made the case that research into co-occurring conditions through genetic studies is invaluable, but others have expressed concerns about how this research can be done without contributing to eugenics.
When asked if you think the plans for genetic subgroups are clear, I’d recommend selecting Strongly Disagree.
You’ll then see a comments box around the changes needed to make the subgrouping plans clearer.
Things you could say here: The study team could be much clearer about what particular type of changes to support could come about from Spectrum 10K.
In the next section around whether the subgrouping plans are ethical, I’d recommend selecting Strongly Disagree.
For the question around whether you think the plans will not cause harm to autistic people, I’d recommend selecting Strongly Disagree.
When asked to what extent you support plans for autistic subgroups, I’d recommend selecting Not At All.
You’ll then come to the comments and questions part for this section.
Things you could say here: Boycott Spectrum 10K helpfully have a part of their open letter which addresses subgrouping, warning it could “potentially be used to separate autistic people into groups which are deemed ‘low-functioning’, or valueless to society, or ‘high-functioning’”, and references the decision taken to remove autistic subgroups from diagnostic manuals.
Spectrum 10K say they do not “see one subgroup as better than another”, yet in previous messaging have said the study looks to “understand the broad heterogeneity within autism that ranges from learning difficulties through to talent”, implying these two characteristics are on opposite ends of a spectrum and cannot coexist (i.e. autistic people with learning disabilities cannot be talented). Can this study team be trusted to explore subgroups if implications like this suggest they don’t view all autistic people as equals?
The Spectrum 10K team’s position on prenatal testing
At no point in Spectrum 10K’s full response to comments and questions about the study do they address concerns raised by Boycott Spectrum 10K about Professor Matthew Hurles, a member of the study team.
Professor Hurles’ biography on the Wellcome Sanger Institute states he leads the Prenatal Assessment of Genomes and Exomes (PAGE) study “investigating the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening, with the aim of improving the prognostic information that can be provided to parents”.
Spectrum 10K state: “The ARC have never done research to create a prenatal test for autism and Spectrum 10K is not looking for a prenatal test.”
Then there’s the comments box on how to make their position on pre-natal screening clearer.
Things you could say here: See below for a fuller response, but one of the main points to emphasise is that the level of trust from autistic people in the ARC that Spectrum 10K won’t lead to a pre-natal test for autism will be improved by a tiny amount if they ditch their amniocentesis study.
When asked if you think Spectrum 10K’s position on prenatal testing is ethical, I’d recommend selecting Strongly Disagree.
Similarly, on the point about whether you think its position will not lead to harm to autistic people, I’d recommend selecting Strongly Disagree.
It then goes to the changes to reduce harm, comments and questions box for this section.
Things you could say here: Spectrum 10K have not adequately addressed Professor Hurles’ connection to pre-natal screening. While Spectrum 10K state they are not looking for a prenatal test and the ARC have never done research to create such a test, recent reporting has revealed the ARC is currently working on an amniocentesis study, the same science which is used to pre-screen babies for Down’s Syndrome.
Data won’t be shared with the Spectrum 10K study, but they again talk of measures they will take to ensure the information won’t be used “by any other organisation” to create a pre-natal test for autism. Whether we can take the study team at their word is something for you to decide.
One step which would go some way to restore a small amount of confidence in Spectrum 10K would be for the ARC to abandon its amniocentesis study completely.
Past work and statements of the Spectrum 10K researchers
When you come to the part which states “I think the past work of the Spectrum 10K research team is clear”, I’d recommend responding with Strongly Disagree.
See the above section on the research team for points which you can emphasise in the comments and questions boxes. There’s a few new points to raise below.
Things you could say here: At one point, the Spectrum 10K website linked to organisations promoting the controversial ‘treatment’ of Applied Behavioural Analysis, and another formerly known as the Society for the Autistically Handicapped. They only removed this almost a whole day later. When the study team makes a mistake of this small nature, how can they be trusted to handle large swathes of genetic information?
Data sharing: data access and safeguarding against future eugenics
Spectrum 10K states that data sharing with other organisations, it:
- lets other researchers check the study was done well
- means other researchers don’t have to waste time and money collecting the same information
- lets researchers with different specialties analyse the data in different ways
For the first question, I’d recommend selecting the top three options only:
- autistic people who are not researchers or clinicians
- autistic people who are researchers
- autistic people who are clinicians (eg healthcare providers)
When asked if there is anyone else who should be included on the data access committee of Spectrum 10K, I’d recommend adding autistic-led charitable organsiations/disabled people’s organisations and multiply marginalised autistics (i.e. racialised autistics, LGBTQ+ autistics, non-speaking autistics).
For the question around whether you think Spectrum 10K’s plans regarding the data access committee are clear, I’d recommend selecting Strongly Disagree.
Then feel free to add any additional comments in the comments box.
Things you could say here: Autistic members of the committee must have the deciding/majority vote on data sharing, and must not be placed in a lower position of authority on the committee alongside Spectrum 10K researchers. Agreed definitions for key research terms must be immediately established too.
As for the three bullet points Spectrum 10K give around the benefits of data sharing, it’s worth mentioning that all three of these objectives can be met through the publication of a final research paper, where the data made available is limited and tightly controlled, other researchers can still conduct these analyses, but large datasets do not have to be made available to other academics via a committee decision.
If these three objectives can be met through the final research paper, why is a data access committee necessary?
For the comments box for rules for the Data Access Committee, feel free to add any you feel are appropriate.
In response to the question around whether you think the plan for how data is shared is clear, I’d recommend selecting Strongly Disagree.
The next question asks if you agree or disagree that the data plan is ethical. Again, I’d recommend selecting Strongly Disagree.
For the third and final question, around whether you agree or disagree that the data plan will not cause harm to autistic people, I’d recommend selecting Strongly Disagree.
You will then come to the changes and comments part of this section.
Things you could say here: Emphasise that data from the study can be shared through a finalised research paper which will have to go through peer review before appearing in a journal. This will answer the three bullet points listed above without having to establish a data access committee or allow other researchers access to the dataset.
You could also draw attention to the harms which come from commercialising personal genetics data, referencing the fact that the study team initially proposed a £10,000 draw for individuals who handed over their DNA, before deciding that was completely inappropriate.
The use of questionnaires
As previously reported, a voluntary questionnaire for Spectrum 10K 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.
The statement summary given by Spectrum 10K justifying the use of questionnaires includes the line: “By using both health-related information provided by participants or parents/carers of participating children alongside information on health from electronic health records, Spectrum 10K can take into account possible inaccuracy in medical records.”
For the question on whether you support Spectrum 10K collecting data through questionnaires, I’d recommend answering Strongly Disagree.
Equally, for the question on whether Spectrum 10K’s plan for using questionnaires is clear, I’d recommend selecting Strongly Disagree.
You then come to the comments box for how the study could change things to make its plan to use questionnaires clearer.
Things you could say here: Make all questionnaires optional.
When it comes to whether Spectrum 10K’s use of questionnaires is ethical, I’d recommend selecting Strongly Disagree.
A comments box is then visible for comments about what Spectrum 10K could do to make questionnaire usage more ethical.
Things you could say here: Remove plans to combine both private medical records and questionnaires. It is completely inappropriate and unethical that a research team might identify discrepancies in a participant’s health records before they do, and/or not inform them of such errors.
For the question on whether the questionnaire data will not harm autistic people, I’d recommend selecting Strongly Disagree.
Accessing medical records
Spectrum 10K state in their summary for this section that they will “only access parts of medical records that are to do with the study aims, e.g. diagnoses, prescriptions and referrals”, and that only one member of their team, the database manager, “will be able to link participants’ DNA and questionnaire data to their NHS data”.
You will be asked if you support Spectrum 10K’s plan to access medical records. I’d recommend selecting Strongly Disagree.
When presented with three options about accessing medical records, I’d recommend selecting the option that they should be an optional part of the study.
For the question around whether their plan to access medical data is clear, I’d recommend selecting Strongly Disagree.
There will then be a comments box asking how they can make the plan clearer.
Things you could say here: Do not access medical records. In England, for example, to gain access to such records, they will need to make an application to NHS Digital’s Data Access Request Service (DARS), one principle of this plan involves applicants making clear whether patient objections will be upheld. There is nothing in the current plan about whether participants can see and review either the application or data access agreement, nor has a sample application been made available so participants know the extent of the information requested.
You will then be asked if you agree whether the access to medical records plan is ethical. I’d recommend selecting Strongly Disagree.
Equally, for the question around whether the plan will not harm autistic people, I’d also recommend selecting Strongly Disagree.
You then have the final two comment boxes for this section around reducing harm and any other comments.
Things you could say here: Remove access to medical records as a requirement for the study, and make all questionnaires voluntary. The requirement to access diagnoses, prescriptions and referrals – when one could argue the former covers the latter two – is intrusive and unnecessary. Spectrum 10K does not need to make both medical records access and questionnaire responses mandatory.
Data security and privacy
In October 2019, The Times reported that Stellenbosch University in South Africa had demanded the Wellcome Sanger Institute – who are involved in the study – returns DNA samples collected from indigenous tribes in the country, amid allegations that they had commercialised the health data.
Vice-Rector Eugene Cloete warned that the institute’s conduct “raises serious legal and ethical consequences”.
The claims were refuted by the Sanger Institute at the time, who said that two separate investigations found that “no wrongdoing took place”.
“The inaccurate allegations refer to specific research that aimed to support scientific discovery with partners working in Africa. The Sanger Institute has not commercialised any products based on this research and it has not received and will not financially benefit from any revenues,” a statement on their website reads.
In this section of the survey, the Spectrum 10K team state one of the questions raised around data security is “what will happen to Spectrum 10K data and samples after the project is finished”, yet not once in its summary response does it address long-term data usage.
For the question on whether Spectrum 10K’s data and security plan is clear, I’d recommend selecting Strongly Disagree.
You will then be asked about any changes to make its data and security plan clearer.
Things you could say here: Long-term data usage and the legitimate interest for holding genetic data beyond the lifespan of the study has not been sufficiently addressed.
For the question on whether Spectrum 10K’s data and security plan is ethical, I’d recommend selecting Strongly Disagree.
You will then be asked about any changes to make its data and security plan more ethical.
Things you could say here: Remove the involvement of the Wellcome Sanger Institute, but this is not possible, therefore the case to shut down the study completely is strengthened. Spectrum 10K should also destroy all personal data once their initial study is complete, and should not be dependent on indefinite data usage.
For the question on whether you agree the data and security plan will not harm autistic people, I’d recommend selecting Strongly Disagree.
You will then come to the text boxes for changes to reduce harm, other comments and questions.
Things you could say here: How does Spectrum 10K’s long term use of personal data meet the ‘legitimate interests’ requirement of the GDPR? You can also emphasise the points raised above.
Withdrawal from the study
For the first time in this study, in response to the question around whether agree or disagree with the proposal to just have a ‘no further use’ category for participant withdrawal, I’d recommend selecting Strongly Agree.
Similarly, in response to the question around whether the withdrawal plan is clear, I’d also recommend selecting Strongly Agree.
Feel free to then add any comments in the box about what they could do to make the withdrawal plans clearer.
Things you could say here: Any future withdrawal request under ‘no further use’, if the data has already been used in some capacity, must see the individual informed as to how that data was used and why it can’t be removed.
For the question around whether the plan is ethical, I’d recommend selecting Strongly Agree.
Feel free to then add any comments in the box about what they could do to make the withdrawal plans more ethical.
Things you could say here: No further changes are required, as this proposed single withdrawal reason is a simple and effective way to ensure as many of the current participants can exit the study as smoothly as possible.
For the question around whether the withdrawal plan will not harm autistic people, I’d recommend selecting Strongly Agree.
You can then answer the comment boxes for reducing harm, any other remarks or questions in whatever way you see fit.
Inclusion of children
Spectrum 10K has confirmed this particular issue is still subject to discussions with the Health Research Authority.
For the first question on whether the consent procedure is clear, I’d recommend selecting Strongly Disagree.
There is then a text box for you to explain changes which could make it clearer.
Things you could say here: The full statement from Spectrum 10K on the inclusion of children does not adequately address the issue that parents can recruit their child if they do not fill in an assent form, meaning children could have their DNA analysed and stored for years before they are in a position to ask for it to be destroyed, at which point data which has already been analysed cannot be removed, per Spectrum 10K’s previous statements on data usage.
On whether the policy for children is ethical, I’d recommend selecting Strongly Disagree.
You will then see a comment section for how Spectrum 10K could make the consent procedure for children more ethical.
Things you could say here: Restrict the minimum age for participants to 16, where consent – rather then assent – is required, and autistic young people can exercise their own autonomy without being overruled by their parents and having their data processed for years without their consent.
For the question on whether you agree the procedure will not cause harm to autistic people, I’d recommend selecting Strongly Disagree.
You will then have the three usual comment boxes for changes they can make to reduce harm, any other comments and questions.
Things you could say here: Emphasise that consent should be provided from children for a study of this nature, and not assent. The “adapted” versions of the information sheets for children will not provide the full details of the study which one would argue are completely necessary to make a fully informed decision on the use of data so sensitive as generic data.
Inclusion of adults without capacity to consent
Spectrum 10K has confirmed this particular issue is still subject to discussions with the Health Research Authority.
There are no selection questions in this section, just two boxes for comments and questions.
Things you could say here: The study teams proposals for including autistic adults without capacity to consent are not clear, ethical and will cause harm to autistic people (seeing as Spectrum 10K haven’t allowed us to make it clear here). You could also emphasise the points raised in the previous section, in that it denies autistic individuals autonomy over their own data.
Co-production group who will make changes to Spectrum 10K
For the first question on how autistic people should be involved in the study going forward, I’d recommend selecting:
- An ongoing panel to review and advise on the study progress
- As part of a Data Access Committee
- As a co-production group
- In another way, please tell us more in the box below: a committee of autistic people to oversee the effective shutting down of the Spectrum 10K study
For the next question on topics which should be discussed in more depth through workshops etc., I’d recommend selecting every option.
You will then be asked to rank them from most to least important. Feel free to put them in any order you see fit, but I would recommend putting inconsistency about the aims as your first choice, as it underpins everything else that’s wrong with this study.
Then select whether you would attend any of the sessions as you would see fit, though I’d recommend saying I would be interested in attending for the discussion facilitated by Hopkins Van Mil without Spectrum 10K present, as it demonstrates the level of distrust the autistic community has towards the research team.
After completing the demographic data and adding any other comments you may have, your response is complete! Please do share this with others to ensure a clear message to stop the study is given to Spectrum 10K and its project team.
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This article is the latest in his reporting on Spectrum 10K. Read the previous articles online now.
Liam O'Dell 