PLAIN TEXT OF THE FULL BOYCOTT S10K STATEMENT

PLAIN TEXT OF THE FULL STATEMENT:

Joint statement from Autistic community members, academics, representatives of advocacy organisations, and allies about grave concerns regarding the Spectrum 10K study announced Tuesday 24th August 2021 (document includes plain language summaries for accessibility and uses a font easier to read for some people. The plain language summaries can be found on their own for those who need them HERE. There is a dedicated @BoycottSpect10K account on Twitter, and you can find Autistic people discussing the study via the #StopSpectrum10K).

The full statement (letter) including where you can sign if you say you agree with our statement can be found HERE.

BACKGROUND:

On the 24th of August 2021 with a blaze of obviously well-planned publicity, the Spectrum 10k (S10K) research project was announced.

The project arrived with endorsements from ‘celebrities’ related to the autism narrative such as Autistic Naturalist, Chris Packham; parent Paddy McGuiness; parent TV presenters and singing coaches Carrie and David Grant who are parents of Autistic children; along with a selection of professionals from a variety of different fields that work with Autistic people.

It also came with several named Autistic ‘ambassadors’ whose role it is to publicly promote and endorse the project.  

There was a general backlash from a significant number of the Autistic community and allies via social media, including the general population, the Advocacy community, Advocacy groups and organisations, academics, professionals and parents, and this joint statement intends to declare the concerns and position of the signatories (signatures will continue to be collected following submission of this statement to Health Research Authority).

PLAIN LANGUAGE SUMMARY: Lots of people, including Autistic professionals and the public, are worried about the ethics (how moral or right something is for humans) of a new study that has not been clear about how it will help Autistic people.

PREFACE:

We are collectively gravely concerned about the Spectrum 10k research project. 

We fundamentally recognise the need for good, robust genetic and biological research in order to aid greater understanding of the impact of conditions that have genetic roots and can have life-limiting effects or impact on the well-being of Autistic people.

However, we have grave issues over how the data from genetic research could be used, and the very obvious lack of safeguards for its future use.

We have concerns over the vulnerability and naivety of those who will give their samples to this project, or do so on behalf of others, without understanding the implications of DNA collection, genetic research and the narratives around it, or the histories and agendas of those leading and organising this research.

We have concerns over the research itself, the manner in which the research has been created, the process of how the research has been launched and publicised, the lack of clear information and evidenced robust aims and objectives, and the implications of this research.

PLAIN LANGUAGE SUMMARY: Lots of Autistic people, and Autistic professionals, and the public want good studies to be done that will help Autistic people with things they struggle with, and things that mean they have poor wellbeing.

Lots of people are worried that this new research study will not do this because the people in charge of the study have not been clear about what the study is doing, and we want them to be clearer and not lie or hide information.

We want the study to be very clear, with simple language, about how Autistic people giving them saliva (spit) will be used to improve Autistic people’s lives. We also want them to be clear about who they will be giving the information to in the future in case we do not trust the people they want to give our information to.

SUMMARY OF KEY CONCERNS LAID OUT IN DETAIL IN THE REMAINDER OF THIS STATEMENT:

  1. Lack of transparency. There is a disconnect between what the study is telling the public and what they received funding for.
  2. Biodata regulations. We expect to see clear information about what the regulations around biodata are, its use, and future use once the main study is completed. 
  3. Consent issues. With the lack of transparency and clarity about what the study is, what it will do, how it will do it, and what it will do with the genetic data, no potential participant can provide sufficiently informed consent. Further, why could the use of DNA data by others not have been an optional consent clause?
  4. Suitability of the principal and co-investigators. Based on their track records, we seriously call into question the suitability of the principal and co-investigators.
  5. Conflicts of interest. Key researchers did not disclose publicly any and all conflicts of interest to potential participants, or that there are current plans for this dataset to be combined with other datasets based on the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium grant.
  6. Ethical issues. We want to know any and all ethical issues that were discussed in the ethical review of this study.
  7. Ethical issues and transparency. Given the disparities between what this study was awarded funding for, and what they are telling the public and, on the information and consent forms, we expect to be told if there was a substantial amendment submitted by the study.

CONSENT:

There are a number of concerns regarding the study’s attempts to obtain participant consent. The gravest concern is the inability to contribute a DNA sample without the DNA information being passed on to any outside or connected further parties.

ALT TEXT: Screenshot of part of the S10K consent form, the relevant section reads:

“I agree that my anonymised data and DNA can be used in future studies, shared with academic collaborators and included on external research databases for future use*”. Where this example screenshot selected that “no” they do not consent to these conditions there is a red warning pop up that reads:

“You have [indicated] ‘No’ to a required consent statement. Unfortunately, we can only include participants who have indicated ‘Yes’ to the above statement in Spectrum 10K, as this is essential for the study.” ALT TEXT ENDS.

S10K are promoting this study as one looking for genetic links to autism and the (vague) wellbeing of Autistic people, and so it is a glaring red flag that vulnerable Autistic people will be handing over their DNA information that can be used by further parties (more on this concern throughout this statement). Why could the use of DNA data by others not have been an optional consent clause?

Further consent issues: the consent forms for this project are contradictory and confusing and risk leaving vulnerable people exposed to signing up to something they are unable to fully understand because it has not been explained clearly enough. 

Consent for S10K is sought for DNA collection, data collection, and complete access to medical records without clear description as to what the project aims to do; how any of this data will be used by the project; who that data will be passed onto in the future; or how it will be used in the future. We fear that there are grounds for data use violations here, particularly if the DNA data is passed onto organisations in countries outside of the UK.

Some examples of the confusing and contradictory statements include:

You can stop participating at any time, “but we will keep information about you that we already have,” although later in the form, it says you can withdraw your data under “No Further Use” and “would only hold information for archival or audit purpose”.

It is unclear whether that means they are deleting any of the information, and what “information” means in this context. 

Further, multiple different words are used without defining them, and are used interchangeably at different places throughout the consent form, including “samples,” “DNA,” “information,” and “data”. 

The S10K consent form states that if participants withdraw with “No Further Use” that they will destroy the “samples”, but this statement is unclear about whether this includes DNA data that was put into the dataset on a computer, or only the original saliva sample/s. 

The ‘easy-read’ version of the project description (designed for those whose cognitive differences and learning styles might not suit wordy documents and academic language) is not easy-read at all. There are numerous guidelines on the use of and creation of easy-read explanations, yet these do not appear to have been adhered to at all. This ‘easy-read’ document includes generic pictures, pictures with little or no explanation, and very vague statements. The document does not clearly explain the purpose of the project aside from a vague ‘we are doing this to help’, and does not explain what DNA or genetics are, or make any attempt to explain the possible implications of contributing biodata.

These are huge practical and ethical issues, which should be basic for any study, let alone a study as large and as significantly funded as this.

It is imperative that the consent forms and descriptions of the project are clear because the researchers are asking for information from a vulnerable, marginalized group with legal protected characteristics. Some Autistic people may need information communicated differently, more specific details, or different descriptions than might non-autistic participants. This risks leaving vulnerable people exposed to signing up to something they are unable to fully understand because it has not been explained clearly enough.

Due to the consent forms being contradictory and confusing, and the vague and unclear purpose of this study, consent itself is an issue, no matter how well it is obtained.

Further, the project is encouraging parents and carers to sign over DNA samples of children and adults who cannot consent for themselves, encouraging Autistic people to give their DNA and complete medical records, yet important information is either intentionally or unintentionally obfuscated (unclear; obscured), or just simply not given. Children and vulnerable adults would have their DNA information handed over to this study by parents and/or carers, but due to the studies insistence on data sharing once the study is complete, this would be a lifelong commitment that children would have no control over, and they would have no comprehension of this lifelong commitment or the possible implications of how their biodata could be used in the future.

Academics from various scientific backgrounds including genetics and autism research have commented that the consent form, descriptions, and easy-read document are misleading, unclear, do not describe the project’s purpose or methodology in any way and are not fit for purpose. They have said clearly that the S10K study as publicised would not have passed an ethics committee.

PLAIN LANGUAGE SUMMARY: A study information and consent form is a typed or written letter that explains what researchers are asking people to do in their study. If the researchers are very clear about what they are doing in their study, then people can agree (called consent) to take part in the study and do the things the researchers are asking them to do.

For this study we think the researchers have not been clear about the reasons and aims of their study, which is like hiding or lying about what they are actually doing, and they have used different words that mean different things, which confuses people. When people are confused and not told things clearly, they cannot agree to the study as they do not have all the information or facts about it.

Lots of Autistic professionals and the public have looked at the typed and written information from the researchers of this study and do not think it sounds safe for Autistic people to take part.

Lots of the following taken from S10K website and Twitter: https://docs.autismresearchcentre.com/Spectrum10K/Spectrum10K_FAQs.pdf

STEERING COMMITTEE NOT FORMED:

The Steering Committee for this research project currently has not been formed, and the study’s social media said it is “in the process” of being set up (Reference: https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE PICTURE BELOW WITH ALT TEXT).

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads:

“Q: Are there autistic people involved in the process? How will you identify what is and is not eugenics. These teams have been known to lie in the past.

Autistic people will be part of our committee who makes the decisions about who to share data with, we are in the process 22/

of setting up this committee. Any data shared will be subject to a contract between research institutes which will explicitly state what it can and can’t be used for. The wellbeing and support of autistic individuals and the autism community is our highest priority. 23/” END ALT TEXT

It is also specified that the steering committee will include the “senior scientific investigator team,” (Reference https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE BELOW PICTURE WITH ALT TEXT), but the Participant Information Sheet and the Consent Form do not explicitly or transparently state who these  researchers are, their affiliations, or any/all of their conflicts of interest.

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “Q: Will sharing the data with others mean that it can be used by future studies which can be eugenics-based even if this isn’t?

No data will be shared without stringent oversight and governance. An internal study Steering Committee comprised of the senior scientific 12/

investigator team and suitably qualified experts, including autistic individuals, will review and oversee any requests to access data. To access any anonymised data collected by us researchers will have to submit a full proposal, which then will have to be approved by the 13/

dedicated panel. To be approved it must align with our aims of no cure, no eugenics, not harmful etc. and have value to science and the autism community. 14/”. ALT TEXT END.

Therefore, potential participants do not have sufficient, explicit, or transparent information in order to be suitably informed about this study. It is not clear to any potential participant who is responsible for releasing the data from this study in the future, and prospective participants cannot possibly be made sufficiently informed as the committee has not been set up ahead of participant sampling.

It is also not stated how many Autistic people would be on the Steering Committee, whether they would have majority say, or how many would represent the intersectionality of our Autistic community (e.g., Black people; people of colour; those with a learning disability; non-speaking Autistic people; gender and/or sexuality diverse people; etc.).

This study has been advertised to the public on the news, and Autistic ambassadors have been recruited to endorse this study, all prior to forming the Steering Committee. Further, the S10K social media account has told the public that a consortium has not yet been formed, when this is blatantly false (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-autistic-traits).

PLAIN LANGUAGE SUMMARY: We have not been told who makes the decisions to give researchers we do not know the saliva (spit) information Autistic people might give them for this study. People cannot consent (agree) to take part in this study because the study people are saying it will give researchers we do not know in the future our saliva (spit) information.

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “Q: Will sharing the data with others mean that it can be used by future studies which can be eugenics-based even if this isn’t?

No data will be shared without stringent oversight and governance. An internal study Steering Committee comprised of the senior scientific 12/”. ALT TEXT END

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “investigator team and suitably qualified experts, including autistic individuals, will review and oversee any requests to access data. To access any anonymised data collected by us researchers will have to submit a full proposal, which then will have to be approved by the 13/”. ALT TEXT END

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “dedicated panel. To be approved it must align with our aims of no cure, no eugenics, not harmful etc. and have value to science and the autism community. 14/”. ALT TEXT END

Further, it has not been made transparent, explicit, or clear what the definitions of “no cure, no eugenics, not harmful etc.” are. Critically, it is not clear who the research study members believe has the authority to determine what is and is not harmful. Many Autistic people would argue it is Autistic people who should determine what constitutes harm.

This is why it is imperative that participants know who is represented on the Steering Committee before consenting. There is a history of research that has caused harm even when people believe that it has “value to [the] science and autism community” (Reference https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE ABOVE PICTURE WITH ALT TEXT). Autistic people deserve to know who is in control of their genetic data and what the Steering Committee would define as valuable, what they would define as eugenics, what they would define as not harmful, and what they would define as “no cure.” For example, would a drug “treatment” for autism be considered a cure to this Steering Committee? Participants will have to make assumptions instead of being provided thorough, explicit, transparent, and clear information about what the criteria is for using this database.

PLAIN LANGUAGE SUMMARY: We have not been told who is in charge of making decisions for this study (called a steering committee because they are supposed to steer decisions and choices for what to do), and so we cannot know what the study people think Autistic people care about. They might think we want something that we do not want, and they might want things that actually end up hurting Autistic people, or even meaning that Autistic people are not born in the future.

FEARS AROUND EUGENICS AND INTERVENTIONS:

There are genuine and well publicised fears amongst the Autistic community around eugenics-based science and the potential development of ‘screeners’, such as those used to give pregnant parents the opportunity to abort children with Down Syndrome and other genetic differences.

The fear is that genetic prenatal screenings would be used to identify Autistic babies in utero and give parents the opportunity to abort them. 

The grant awarded to the researchers involved in S10K was for the collection of 10,000 DNA samples of Autistic people, stating the study will: 1) “identify several genetic variants that contribute to the development of autism”; 2) “investigate if there are any genetically-defined subgroups of people with autism”; and 3) “Improve on existing methods for diagnosing autism” (link – “Wellcome grants awarded 1 October 2005 to 30 June 2021 as at 12072021” – https://wellcome.org/reports/grant-funding-data-2019-2020#downloads-3747).

The S10K study has not explained these aims to the public, and this GWAS grant award does not mention anything regarding improving Autistic people’s wellbeing or focusing specifically on co-occurring conditions rather than only autism. However, S10K is publicising that these are the purpose of the study. The actual description of the grant application that was awarded states “The proposed research aims to accelerate the discovery of common, low frequency, and copy number variants in autism and autistic traits” without any mention of improving Autistic people’s well-being or researching co-occurring conditions. This lack of transparency regarding what this data will be used for in the future, and the lack of transparency of what has been stated it will be used for based on the awarded grant summary description, is clearly unethical.

It is important to note that the original summary for the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium grant awarded for this project (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-Autistic-traits – SEE BELOW PICTURE WITH ALT TEXT) is solely focused on identifying “several genetic variants that contribute to the development of autism”, and does not mention “co-occurring conditions”, as S10K have stated on Twitter. Further, they have plans to combine the 10,000 genetic dataset they collect with 90,000 other Autistic people’s DNA to specifically “identify several genetic variants that contribute to the development of autism”. It also states that this study will “investigate if there are genetically-defined subgroups of people with autism” without mentioning anything about co-occurring conditions. If these researchers already have funding to do this, and this is planned, participants have a right to know about it. However, none of this information is anywhere on their website, the Participation Information Sheet, or the consent forms.

ALT TEXT: Screenshot of Wellcome.org funding award, reads: 

“Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium

Collaborative Awards in Science; Year of award: 2018; Grantholders: Prof Simon Baron-Cohen, University of Cambridge, United Kingdom; Dr Matthew Hurles, Wellcome Sanger Institute, United Kingdom; Prof Daniel Geschwind, University of California, Los Angeles, USA; Prof David Rowitch, University of Cambridge, United Kingdom.

Project summary

Autism is a lifelong developmental condition and about 1% of the population is thought to have the condition. It is largely genetic and between 400 and 1,000 genes are thought to contribute to autism. However, fewer than 100 genes with a link to autism have been identified.

We will accelerate gene discovery by collecting DNA samples from 10,000 people with autism in the UK and their immediate families. We will combine this information with genetic information from 90,000 other people with autism already gathered from around the world. This large-scale resource will enable us to identify several genetic variants that contribute to the development of autism. This information will allow us to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism.” ALT TEXT ENDS.

Another fear is that early or in-utero screenings would encourage identification of an Autistic person and then psychological interventions from an early age to normalise an Autistic child through the use of behavioural therapies and social skills training, known to correlate with post-traumatic stress responses and symptoms (Kupferstein, 2018).

The project only attempts to alleviate those fears by stating that in itself the project does not agree with eugenics, and that data will only be passed onto projects that meet the same standards of ethics S10K apply to themselves, which as stated are vague, opaque, and obfuscated (obscure).  

PLAIN LANGUAGE SUMMARY: Autistic people are worried that even though S10K say they are against eugenics (science that tries to control the human population by getting rid of certain people/features they decide they don’t want) and are focused on the well-being of Autistic people, we feel like we are being lied to because when we look at what they have said or written more closely, there is nothing about helping Autistic people and their wellbeing.

What they have written about is finding the cause of autism and why Autistic people are born Autistic. They have already collected a very large number (90,000) of Autistic people’s DNA (DNA is small, invisible information inside our bodies), and so we don’t understand why they need 10,000 more Autistic people and their DNA information, but we do know that DNA information is very valuable.

The project people are telling us that the DNA information will be used for other studies and by businesses in the future, but we do not know who will use our valuable and important DNA information in the future. We also don’t know if our DNA information will be used to make an autism test that pregnant people can use so that they can decide not to have an Autistic baby. This has happened for another group of people who have something called Down Syndrome, and it has meant that lots of these people have not been born. We are scared this will happen to Autistic people too, and we don’t want Autistic people to stop being born.

DEHUMANISING NARRATIVES, RHETORIC, AND RESEARCHERS’ CONFLICTS OF INTEREST:

Dehumanising rhetoric (https://theAutisticadvocate.com/2020/02/regarding-the-use-of-dehumanising-rhetoric/): the way in which autism and Autistic people are spoken about by the S10K project and its key researchers is a clear indication of the attitudes driving this projects aims as stated in the funding awarding body (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-Autistic-traits)

It is impossible to trust the S10K project when its key researchers hold public attitudes like the following:

“Autistics lack the quintessential part that makes us human” (Simon Baron-Cohen referring to his misperception that Autistic people lack empathy; https://docs.autismresearchcentre.com/papers/2001_BC_review.pdf)

“If you’re interested, even in a more abstract way, in human behavior and human cognition, autism is an extraordinary window into that. [Autism] involves dysfunction in social cognition, language ― the things that are really part of what makes us human” (Daniel Geschwind  https://www.spectrumnews.org/news/profiles/daniel-geschwind-after-many-detours-on-the-trail-of-autisms-genetics/).

The men leading the Spectrum 10K project have defined Autistic people as inhuman or not human. Yet these are the people responsible for policing the ethical standards of this study, and they do not view us as human.

PLAIN LANGUAGE SUMMARY: Autistic people do not trust the people leading this project because they have publicly said some very worrying things about Autistic people in the past. They have said things like Autistic people are not human.

THERE ARE FURTHER CONCERNS ABOUT THOSE LEADING THE PROJECT:  

Simon Baron-Cohen is known for having created (now debunked) theories that have caused the most harm to Autistic people, particularly women, people of marginalised genders, and some boys and men who do not meet the narrow stereotype Baron-Cohen endorses and perpetuates. Simon Baron-Cohen’s debunked “theory of mind”, “extreme male brain”, and “systemising-empathising” theories of autism are responsible for the inaccurate and damaging stereotypes that exist about Autistic people and our experiences. He has fed the rhetoric that we have no empathy, that only, or largely only, boys/men/males are Autistic. This has led to whole lost generations of Autistic people. There are thousands if not hundreds of thousands of Autistic people whose mental health have been damaged by not knowing they are Autistic or discovering this later in life because they do not fit his narrow view of “subgroups” he hopes to maintain (still propagated by him through book sales; Gernsbacher, 2019).

Daniel Geschwind leads an organisation called the Centre for Autism research and Treatment, he personally has a history of animal testing (particularly focusing on ‘Autistic mice’ research, often derided amongst the Autistic community), stem cell research looking for causes and interventions for Autism; and CART that invoke the use of Applied Behavioural Analysis for behaviour modification (a method known to increase the likelihood of PTSD; Kupferstein, 2018).

Both men have strong links to organisations abhorred by many members of the Autistic community, such as Autism Speaks and AIMS-2 Europe. Geschwind was the first chair of an organisation called Cure Autism Now, which later merged with Autism Speaks with whom he has a very long and close association.

There is so much historic mistrust of Simon Baron-Cohen within the Autistic advocacy and academic communities for many valid reasons; and now the same with Daniel Geschwind. There is also mistrust and opposition to many of the organisations both men are associated with currently – as such we are confused as to why there was no thought to alleviate concerns prior to this. 

Matthew Hurles, who is a researcher on the GWAS grant, leads the Prenatal Assessment of Genomes and Exomes (PAGE) Study, which investigates “the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening” (link – https://www.sanger.ac.uk/person/hurles-matthew/). Further, Matthew Hurles has a start-up company called Congenica Ltd seeking “to provide sustainable genetic diagnostic services to the NHS and other healthcare providers.” This is clearly a conflict of interest but has not been told to participants regarding future research that may occur. Participants have a right to know which researchers may gain access to their dataset and what other research interests they may have surrounding autism with real potential concerns for prenatal screening tests to be implemented from the analysis of this data.

ALT TEXT: Screenshot of Mathew Hurles biography.

In a recent overview of the history of theorising about autism, Vivanti and Messinger (2021, p. 8) offer a concluding statement that highlights our concerns outlined above:

“Theories—whether explicit or implicit—shape the questions that researchers ask, the methods they use to test them, and the way the resulting data are interpreted. They also guide the work of practitioners and policy-makers, and influence societal attitudes and opinions… [R]esearch efforts need to extend beyond the biological and behavioral features of autism, and examine the explicit and implicit theories that guide individuals, systems and institutions interfacing with autism, in the effort to creating a more autism‐friendly society”.

The S10K is ignoring the advances in discussion around humanising Autistic people and asking us what we want when it comes to research about us.

PLAIN LANGUAGE SUMMARY: The men leading the S10K project have a very poor history and attitude towards Autistic people. The work they have done has caused lots of damage and hurt to Autistic people. We believe they do not understand Autistic experience or want to work with Autistic people to understand Autistic experience, but are focused on “curing autism” and/or stopping Autistic people being born.

CO-PRODUCTION:

Academia is starting to accept that the most valid form of research not only incorporates Autistic voices, but engages in co-production, where ideas are formulated by advocates and academics together, then applied by advocates and academics. Simon Baron-Cohen sits on the editorial boards for the academic journals ‘Autism’ and ‘Autism in Adulthood’, an immensely important practice in academic publishing that comes with an enormous amount of responsibility and knowledge of the narratives around autism. Indeed ‘Autism’ has just published a whole new set of publishing guidelines directed at both uplifting Autistic voices and prioritising the Autistic community’s priorities for research, and the latter has publishing guides around co-production based on the work of AAspire (Academic Autism Spectrum Partnership in Research and Education).  

There is no evidence of co-production in any of the S10K project and, despite repeated questioning, there has been no confirmation that openly Autistic, or any Autistic researchers have been involved in the creation or design of the study; only that an advisory panel that met 1-2 times a year, and included only 4 Autistic people out of 11 people (5 non-autistic parents and 2 non-autistic clinicians), and they have not given information about whether these Autistic people are researchers. Given they are hoping to collect DNA data from 10,000 Autistic people, there is no excuse for not including Autistic people at every level of the project.

A recent (since the announcement of the study) request by a member of the Autistic community to join the S10K Patient and Public Involvement group (PPI – a group that represents stakeholders affected by the research) was turned down with this statement:

“We are actively planning to expand our control group. We ideally want to include more Autistic participants from Spectrum 10k to ensure that the research is co-designed.  However, this may happen later, say 6 months later.”

ALT TEXT: Screenshot of anonymised email response from S10K when asked to join the S10K Patient and Public Involvement group. Reads:

“We are actively planning to expand our control group. We ideally want to include more Autistic participants from Spectrum 10k to ensure that the research is co-designed. However, this may happen later, say 6 months later.”

Participants in a study should not also be participants in the PPI group. Clearly Autistic people have not been involved in the formulation and application for the grant for this project. If people are being asked to co-design the research in 6 months’ time, this calls into question what S10K has received funding for.

There is phenomenal mistrust among many Autistic people of autism research. The aims and priorities of much research is focused on biology and behavioural interventions with very little focused on quality-of-life outcomes from an Autistic perspective.

The S10K research project does not meet the basic recommended inclusive guidelines or standards of either of the two journals the lead researcher Baron-Cohen sits on the editorial boards of.

PLAIN LANGUAGE SUMMARY: S10K do not have enough Autistic people guiding the project. They said they will only consider Autistic people in 6 months’ time when people have given their DNA information to them already. This means that they are picking people who have a good opinion of S10Ks work so it is not fair or balanced. Simon Baron-Cohen is very important in Autism research and a group he is in recently published guides about including Autistic people and what they want in all research, but the S10K project that he co-leads does not do that.

QUALITY OF LIFE:

There has been much talk by the S10k project regarding quality of life for Autistic people. The project claims to want to improve the mental health and wellbeing of Autistic people, but at no point does it substantiate what this means.  

There is little evidence to show that the S10k project understands what good quality of life for Autistic people looks like, or how the study would achieve this.

There is no explanation or transparency as to what constitutes Autistic quality of life or who is making the decisions as to what constitutes Autistic quality of life for this project. Given there are no Autistic people substantially involved in the study set up so far, any consideration as to what constitutes Autistic quality of life will have been made by non-autistic researchers.

We already have substantial evidence as to why Autistic people have poor mental health. For example, we are more likely to be victims of abuse – a study that Baron-Cohen himself co-authored (Griffiths, et al., 2019).

To quote Baron-Cohen (BBC Breakfast, Tuesday 24th of August 2021):

“They [participants] just spit in a tube, send it back to us so we can look for the genetic causes of autism.”

It is entirely disingenuous for Baron-Cohen to claim that we do not know why some Autistic people have poor mental health, and for the study to state a wholly tenuous link between collecting Autistic people’s DNA in order to determine genetic foundations of autism and Autistic wellbeing/quality of life.

Further, Baron-Cohen mentioned nothing about looking for the genetic causes of poor mental health (a vague term); depression; or sleep difficulties to solve quality of life problems.

The public project materials claim that sleep quality, anxiety and depression are all rooted in genetic factors. These claims are largely erroneous and have no strong empirical evidence to support them. We would be extremely interested to see the evidence that supports the claims with which this project is founding many of its premises on.

The S10K project is clearly operating from a pathology paradigm (Walker, 2016) perspective. This is in direct conflict with the perspective of the actually Autistic community who overwhelmingly prescribe to the neurodiversity paradigm and the social model of disability (Gray-Hammond, 2021).

PLAIN LANGUAGE SUMMARY: S10K have not told us what they mean by Autistic quality of life and wellbeing, or who is deciding this, but we do know it is not Autistic people making the decision or even being asked.

S10K already know what contributes to poor Autistic mental health and wellbeing and this information is not in our DNA. Autistic people know that environment (people, places, things, life experiences, surroundings, abuse, poor support systems etc) are the main issues for mental health and wellbeing.

IGNORING RECENT RESEARCH AND THE AUTISTIC COMMUNITY PRIORITIES:

Much focus in academic research in the last few years has turned to marginalisation, stigma, and the role of society in the poor mental health and well-being outcomes of Autistic people, but S10K seems to have conveniently ignored this to justify DNA collection solely from Autistic people. 

If co-occurring conditions (S10K highlights epilepsy for example) are at the heart of the biological purpose of the S10K study and genetic in nature, and DNA samples are being collected on that basis, why is the study not based on the outlined co-occurring conditions and include non-autistic participants who also have issues with those factors. If the claim is about well-being and that some well-being factors are co-occurring conditions, then why are only Autistic people being targeted? 

Not only is this perplexing and confusing and another glaring concern, we firmly believe it highlights a disconnect between this project and the community it allegedly seeks to serve. It also points overwhelmingly to dishonest intentions, particularly as the funding summary focussed solely on “identif[ying] several genetic variants that contribute to the development of autism…to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism”.

PLAIN LANGUAGE SUMMARY: S10K are saying they want to investigate co-occurring conditions that some Autistic people have, like epilepsy, but they only want DNA from Autistic people and their relatives, not from non-autistic people who also experience epilepsy. This makes us feel like they are not telling the truth. But if they are looking for the cause or to cure autism then what they are saying would make sense, but as we’ve explained, if they are looking for Autism in our DNA information in our bodies this not what Autistic people want.

SUBTYPES:

One of the claims made by the project is that it is necessary to identify subtypes in Autistic presentation in order to identify if people are more susceptible to various co-occurring conditions. This is something we greatly refute.

The debate around subtypes in Autistic presentation has existed since early categorisation of Autistic experience. Subtypes were removed from the diagnostic criteria for both empirical and political reasons. 

The recent diagnostic manuals (DSM5 and ICD11) updated their definitions for autism spectrum disorder to remove the issues found in early definitions that sought to subtype, subgroup, and/or subcategorise Autistic people. This was done based on years of evidence that Autistic people move in and out of subcategories, rendering them invalid and impractical (Wodka, Mathy, & Kalb, 2013). This included the decision to remove Asperger’s as a separate diagnosis.  

Subgrouping could potentially be used to separate Autistic people into groups which are deemed “low-functioning” (“from learning disabilities”), or valueless to society, or “high-functioning” (“through to talent”; BBC Breakfast with Simon Baron-Cohen, Tues 24th Aug, 2021; & https://adminoxy.com/project-coordinator-fixed-term,i5868.html ) and therefore have value to society. Given the consideration and evidence used to come to the decision to remove subtyping from diagnostic manuals (a decision that included Autistic people’s input), and allow for a more nuanced diagnosis, subtyping would for many Autistic people and their families be a very unwelcome step backwards.

PLAIN LANGUAGE SUMMARY: Subgroups (putting people into different groups) are harmful to Autistic people and are not correct. Scientists have been trying to use subgroups since autism was first talked about and it has not worked. Once we removed subgroups much more learning has happened in understanding Autistic experience. We believe Simon Baron-Cohen wants to bring back subgroups as a lot of his old work is based on this even though it’s not helpful to Autistic people. We don’t want Autistic people grouped based on whether other people think they are useful or not useful. We do not want to split up the community because each Autistic person is totally unique and valued.

AMBASSADORS:

At launch, S10k made good use of celebrity endorsers via social media and television and radio marketing.

We feel this is a very transparent marketing attempt to assuage people’s concerns, pacify advocates and paint a picture of trustworthiness. The celebrity ambassadors do not convey any in-depth knowledge of the project, they appear to be reading from scripts and when publicly pressed about concerns, one responded:

“I asked lots of questions, why don’t you do that too?”

The use of celebrity endorsement creates an impression that the S10k project assumes that Autistic people, parents, and carers are not capable of doing their own research or making their own decisions, and that providing ‘safe’ faces and voices will mitigate worries and questions. This is not only extremely patronising and ableist, but a perfect example of the extreme privilege in academia.

Autistic people, parents, and carers are not able to make an informed decision all the while the information is gatekept, and the documents available are purposefully convoluted, confusing, and misleading, obfuscating (obscuring) the project’s aims and objectives. 

We also have great concern over the actions of these ‘Ambassadors’ and the way they have acted on social media.

One of the Autistic ambassadors has an open record of racism, transphobia, and far right commentary on their social media and reacted aggressively to those who challenged the validity of this research.

A celebrity Ambassador has made the assertion that those who oppose this research are in some way anti-science, or fearful of science and conspiracy theorists – even when many of those opposing this research are scientists and advocates who work alongside and within academia. He has also given out information that directly contradicts that given out by the project.

Others have been dismissive of concerns and when pushed have deleted social media posts rather than answer questions.

The way the ambassadors have responded to genuine and factually based criticism of this project is, to us, indicative of the intent of the project. There are very real concerns and fears out there, and for those to be dismissed and told that critiquing this project is anti-science is another level of the marginalisation, invalidation, and dehumanisation faced by Autistic people on a daily basis and is being recognised now by research.

It also feels complicit: that there is something to hide.  It is very easy to make the logical leap that the thing hiding is the endgame of the project: that it will act as a gateway to the fears mentioned earlier around eugenics, screening tools, and interventions. Not to mention the concern over who will own whole copies of individual people’s genomes in the future, because of this project.

Another concern about the ambassadors is the inclusion of Autistica and its listing as an advocacy organisation. Autistica are a controversial organisation for the Autistic community, for similar reasons to those stated in this document and further, more complex ones less relevant to this statement.

Further to the lack of Autistic involvement in the process of creating this research: on the BBC television launch of this project not a single Autistic person was included.

When a known and respected Autistic community advocate was invited to an early BBC4 radio interview about the project, armed with her logical questions, she was railroaded by the presence of Baron-Cohen himself and given no opportunity to put her questions to him. As an Autistic person she was deeply distressed that she had not been informed that Baron-Cohen himself would be there and was not given the chance to ask her questions – changes like this are cruel to an Autistic person who was given expectations of how the interview was to proceed.

Again, we suggest this provides further evidence of the extreme disconnect between the project leaders and the community they seek to research.

PLAIN LANGUAGE SUMMARY: We think S10K are using famous people to trick people into thinking that they are safe, and that we should trust them. Some of the ambassadors (people promoting the S10k project) haven’t been very nice to people who have asked them questions about the project, and they have all recently stopped talking about the project. The ambassadors are not very knowledgeable about the S10K project, so we don’t trust them.

When the study people went on television to talk about their project, they didn’t invite Autistic people to hear what they thought of their ideas, and when they did invite an Autistic person on the radio, they did not let them speak and ask their questions about the project and their worries about it.

CONCLUSION:

Much around this project, including the aims and objectives and answers when questioned, are vague and contradictory. As a collective we are astounded this project received funding and ethical approval.  

We have concluded that the materials approved for public dissemination are inconsistent, ambiguous, non-specific, and quite simply, have too many aims to be a viable study.  

The materials make too many nebulous claims about what the study will achieve; achievements that genetic studies dedicated to individual experiences such as Ehlers Danlos Syndromes; ADHD; depression etc. have not been able to accomplish in (sometimes) decades.

We assume the aims and objectives must have been made very clear to funding bodies, but the fact that they have not been made explicitly clear to the public is hugely concerning. The confusing and often chaotic nature of explanations and responses leaves us as a collective gravely concerned at the methodology and veracity of this research, especially when there is historical precedent for prenatal screening tests for disabilities that are not life-threatening, such as Down Syndrome.

As one academic put it:

“My sense is that genetics research projects like Spectrum 10k are requiring Autistic people to have a level of trust in autism research that most autism researchers absolutely have not earned.”

Our concerns around this, as both Autistic and non-autistic advocates, academics, and professionals are enormous and as a result we cannot support or condone this research in any way; and indeed, we will actively warn Autistic people, parents, and carers away from taking part.

We also question the funders and ask why such a clearly overly optimistic, woolly, and unclear project has been funded, and how it has passed any ethics boards.

In short, it is, at best, a study lacking not only Autistic co-production, but also lacking a thorough understanding of Autistic experience and wellbeing. At worst, this is a thinly veiled attempt to DNA data mine at the expense of the Autistic community.

PLAIN LANGUAGE SUMMARY: We are very, very worried. Everything that has been talked about or written about this project is confusing and not clear. We don’t see how this can be a good study that will help Autistic people when it’s so confusing and doesn’t involve enough Autistic people. We haven’t been asked if we want this study done or how we feel about it.

We think this study got money by saying one thing, but it looks like they are doing something else with it. This feels like lying.

We’re worried that our spit (which contains our valuable, invisible DNA information that researchers can see with special equipment) could be used to hurt Autistic people or stop Autistic people being born in the future.

We feel like S10K do not understand Autistic people and that they want to sell the information they get from our spit.

We do not support this study and we will tell people why and hope that they will also not support or take part in the study.

DEMANDS:

Due to the above, we insist on the full publication of the full application as it was approved for funding, in order for full transparency of this study to be reached.

We also insist on the re-evaluation of the study by the ethics awarding body.

PLAIN LANGUAGE SUMMARY: We are asking that some other people look at this study to make sure there is no lying or hiding things from the public and that it is not dangerous to Autistic people either now or in the future.

We also want to see the paperwork and files that tell us what this study is actually about because S10K are not being clear or making a lot of sense.

END

As well as signing this statement at our JotForm HERE – which will be sent to Health Research Authority and the bodies that awarded S10K funding – please consider signing the following petition https://www.change.org/p/university-of-cambridge-stop-spectrum-10k?utm_content=cl_sharecopy_30481620_en-GB%3A4&recruited_by_id=264d2700-09af-11ec-8010-8d53b4d8f0ca&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial

This Boycott S10K statement was researched and written by the following Autistic people: 

Signed:

Aucademy

  • Dr Chloe Farahar
  • David Gray-Hammond (Emergent Divergence)
  • Northern Autie
  • Tigger Pritchard (Tigger Training, and The Autistic Coffee Shop with Tigger Pritchard)
  • Annette Foster
  • Kieran Rose (The Autistic Advocate)
  • Emma Dalmayne (Autism Inclusivity Meets)
  • Autistic Science Person
  • Jodie Isitt (The Nurture Programme)
  • Bobbi Elman (Neurodivergent Autism Support)
  • Jodie Smitten (Jodie Smitten, Children’s Well-being Practitioner & Autism Specialist)
  • Dr Monique Botha
  • Tanya Adkin (Tanya Adkin – Autistic children and young person’s advocate)
  • Katie Munday (Autistic and Living the Dream, @Social_Parasite)
  • Mel Duncan (Gecko Community: Alternative Education Providers)
  • Eliza Fricker (Missing the Mark)

Boycott Spectrum 10K – PLEASE SIGN

We ask that people read our joint statement from Autistic community members, academics, representatives of advocacy organisations, and allies about our grave concerns regarding the Spectrum 10K study announced Tuesday 24th August 2021.

Our concerns are many and are detailed in the attached statement letters on our jotform found further down this page, in plain text at the very bottom of this page, and here.

If you agree with our concerns please sign the statement by completing the details asked on the jotform (name, email, and optional postcode and country), and we will be sending this statement to the ethics board who approved the study, as well as the funding bodies funding the study.

Our document includes plain language summaries for accessibility and uses a font easier to read for some people. The plain language summaries can be found on their own for those who need them below the first PDF and on their own page here.

There is a dedicated @BoycottSpect10K account on Twitter, and you can find Autistic people discussing the study via the #StopSpectrum10K hashtag.


PLAIN TEXT OF THE FULL STATEMENT:

Joint statement from Autistic community members, academics, representatives of advocacy organisations, and allies about grave concerns regarding the Spectrum 10K study announced Tuesday 24th August 2021 (document includes plain language summaries for accessibility and uses a font easier to read for some people. The plain language summaries can be found on their own for those who need them HERE. There is a dedicated @BoycottSpect10K account on Twitter, and you can find Autistic people discussing the study via the #StopSpectrum10K).

BACKGROUND:

On the 24th of August 2021 with a blaze of obviously well-planned publicity, the Spectrum 10k (S10K) research project was announced.

The project arrived with endorsements from ‘celebrities’ related to the autism narrative such as Autistic Naturalist, Chris Packham; parent Paddy McGuiness; parent TV presenters and singing coaches Carrie and David Grant who are parents of Autistic children; along with a selection of professionals from a variety of different fields that work with Autistic people.

It also came with several named Autistic ‘ambassadors’ whose role it is to publicly promote and endorse the project.  

There was a general backlash from a significant number of the Autistic community and allies via social media, including the general population, the Advocacy community, Advocacy groups and organisations, academics, professionals and parents, and this joint statement intends to declare the concerns and position of the signatories (signatures will continue to be collected following submission of this statement to Health Research Authority).

PLAIN LANGUAGE SUMMARY: Lots of people, including Autistic professionals and the public, are worried about the ethics (how moral or right something is for humans) of a new study that has not been clear about how it will help Autistic people.

PREFACE:

We are collectively gravely concerned about the Spectrum 10k research project. 

We fundamentally recognise the need for good, robust genetic and biological research in order to aid greater understanding of the impact of conditions that have genetic roots and can have life-limiting effects or impact on the well-being of Autistic people.

However, we have grave issues over how the data from genetic research could be used, and the very obvious lack of safeguards for its future use.

We have concerns over the vulnerability and naivety of those who will give their samples to this project, or do so on behalf of others, without understanding the implications of DNA collection, genetic research and the narratives around it, or the histories and agendas of those leading and organising this research.

We have concerns over the research itself, the manner in which the research has been created, the process of how the research has been launched and publicised, the lack of clear information and evidenced robust aims and objectives, and the implications of this research.

PLAIN LANGUAGE SUMMARY: Lots of Autistic people, and Autistic professionals, and the public want good studies to be done that will help Autistic people with things they struggle with, and things that mean they have poor wellbeing.

Lots of people are worried that this new research study will not do this because the people in charge of the study have not been clear about what the study is doing, and we want them to be clearer and not lie or hide information.

We want the study to be very clear, with simple language, about how Autistic people giving them saliva (spit) will be used to improve Autistic people’s lives. We also want them to be clear about who they will be giving the information to in the future in case we do not trust the people they want to give our information to.

SUMMARY OF KEY CONCERNS LAID OUT IN DETAIL IN THE REMAINDER OF THIS STATEMENT:

  1. Lack of transparency. There is a disconnect between what the study is telling the public and what they received funding for.
  2. Biodata regulations. We expect to see clear information about what the regulations around biodata are, its use, and future use once the main study is completed. 
  3. Consent issues. With the lack of transparency and clarity about what the study is, what it will do, how it will do it, and what it will do with the genetic data, no potential participant can provide sufficiently informed consent. Further, why could the use of DNA data by others not have been an optional consent clause?
  4. Suitability of the principal and co-investigators. Based on their track records, we seriously call into question the suitability of the principal and co-investigators.
  5. Conflicts of interest. Key researchers did not disclose publicly any and all conflicts of interest to potential participants, or that there are current plans for this dataset to be combined with other datasets based on the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium grant.
  6. Ethical issues. We want to know any and all ethical issues that were discussed in the ethical review of this study.
  7. Ethical issues and transparency. Given the disparities between what this study was awarded funding for, and what they are telling the public and, on the information and consent forms, we expect to be told if there was a substantial amendment submitted by the study.

CONSENT:

There are a number of concerns regarding the study’s attempts to obtain participant consent. The gravest concern is the inability to contribute a DNA sample without the DNA information being passed on to any outside or connected further parties.

ALT TEXT: Screenshot of part of the S10K consent form, the relevant section reads:

“I agree that my anonymised data and DNA can be used in future studies, shared with academic collaborators and included on external research databases for future use*”. Where this example screenshot selected that “no” they do not consent to these conditions there is a red warning pop up that reads:

“You have [indicated] ‘No’ to a required consent statement. Unfortunately, we can only include participants who have indicated ‘Yes’ to the above statement in Spectrum 10K, as this is essential for the study.” ALT TEXT ENDS.

S10K are promoting this study as one looking for genetic links to autism and the (vague) wellbeing of Autistic people, and so it is a glaring red flag that vulnerable Autistic people will be handing over their DNA information that can be used by further parties (more on this concern throughout this statement). Why could the use of DNA data by others not have been an optional consent clause?

Further consent issues: the consent forms for this project are contradictory and confusing and risk leaving vulnerable people exposed to signing up to something they are unable to fully understand because it has not been explained clearly enough. 

Consent for S10K is sought for DNA collection, data collection, and complete access to medical records without clear description as to what the project aims to do; how any of this data will be used by the project; who that data will be passed onto in the future; or how it will be used in the future. We fear that there are grounds for data use violations here, particularly if the DNA data is passed onto organisations in countries outside of the UK.

Some examples of the confusing and contradictory statements include:

You can stop participating at any time, “but we will keep information about you that we already have,” although later in the form, it says you can withdraw your data under “No Further Use” and “would only hold information for archival or audit purpose”.

It is unclear whether that means they are deleting any of the information, and what “information” means in this context. 

Further, multiple different words are used without defining them, and are used interchangeably at different places throughout the consent form, including “samples,” “DNA,” “information,” and “data”. 

The S10K consent form states that if participants withdraw with “No Further Use” that they will destroy the “samples”, but this statement is unclear about whether this includes DNA data that was put into the dataset on a computer, or only the original saliva sample/s. 

The ‘easy-read’ version of the project description (designed for those whose cognitive differences and learning styles might not suit wordy documents and academic language) is not easy-read at all. There are numerous guidelines on the use of and creation of easy-read explanations, yet these do not appear to have been adhered to at all. This ‘easy-read’ document includes generic pictures, pictures with little or no explanation, and very vague statements. The document does not clearly explain the purpose of the project aside from a vague ‘we are doing this to help’, and does not explain what DNA or genetics are, or make any attempt to explain the possible implications of contributing biodata.

These are huge practical and ethical issues, which should be basic for any study, let alone a study as large and as significantly funded as this.

It is imperative that the consent forms and descriptions of the project are clear because the researchers are asking for information from a vulnerable, marginalized group with legal protected characteristics. Some Autistic people may need information communicated differently, more specific details, or different descriptions than might non-autistic participants. This risks leaving vulnerable people exposed to signing up to something they are unable to fully understand because it has not been explained clearly enough.

Due to the consent forms being contradictory and confusing, and the vague and unclear purpose of this study, consent itself is an issue, no matter how well it is obtained.

Further, the project is encouraging parents and carers to sign over DNA samples of children and adults who cannot consent for themselves, encouraging Autistic people to give their DNA and complete medical records, yet important information is either intentionally or unintentionally obfuscated (unclear; obscured), or just simply not given. Children and vulnerable adults would have their DNA information handed over to this study by parents and/or carers, but due to the studies insistence on data sharing once the study is complete, this would be a lifelong commitment that children would have no control over, and they would have no comprehension of this lifelong commitment or the possible implications of how their biodata could be used in the future.

Academics from various scientific backgrounds including genetics and autism research have commented that the consent form, descriptions, and easy-read document are misleading, unclear, do not describe the project’s purpose or methodology in any way and are not fit for purpose. They have said clearly that the S10K study as publicised would not have passed an ethics committee.

PLAIN LANGUAGE SUMMARY: A study information and consent form is a typed or written letter that explains what researchers are asking people to do in their study. If the researchers are very clear about what they are doing in their study, then people can agree (called consent) to take part in the study and do the things the researchers are asking them to do.

For this study we think the researchers have not been clear about the reasons and aims of their study, which is like hiding or lying about what they are actually doing, and they have used different words that mean different things, which confuses people. When people are confused and not told things clearly, they cannot agree to the study as they do not have all the information or facts about it.

Lots of Autistic professionals and the public have looked at the typed and written information from the researchers of this study and do not think it sounds safe for Autistic people to take part.

Lots of the following taken from S10K website and Twitter: https://docs.autismresearchcentre.com/Spectrum10K/Spectrum10K_FAQs.pdf

STEERING COMMITTEE NOT FORMED:

The Steering Committee for this research project currently has not been formed, and the study’s social media said it is “in the process” of being set up (Reference: https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE PICTURE BELOW WITH ALT TEXT).

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads:

“Q: Are there autistic people involved in the process? How will you identify what is and is not eugenics. These teams have been known to lie in the past.

Autistic people will be part of our committee who makes the decisions about who to share data with, we are in the process 22/

of setting up this committee. Any data shared will be subject to a contract between research institutes which will explicitly state what it can and can’t be used for. The wellbeing and support of autistic individuals and the autism community is our highest priority. 23/” END ALT TEXT

It is also specified that the steering committee will include the “senior scientific investigator team,” (Reference https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE BELOW PICTURE WITH ALT TEXT), but the Participant Information Sheet and the Consent Form do not explicitly or transparently state who these  researchers are, their affiliations, or any/all of their conflicts of interest.

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “Q: Will sharing the data with others mean that it can be used by future studies which can be eugenics-based even if this isn’t?

No data will be shared without stringent oversight and governance. An internal study Steering Committee comprised of the senior scientific 12/

investigator team and suitably qualified experts, including autistic individuals, will review and oversee any requests to access data. To access any anonymised data collected by us researchers will have to submit a full proposal, which then will have to be approved by the 13/

dedicated panel. To be approved it must align with our aims of no cure, no eugenics, not harmful etc. and have value to science and the autism community. 14/”. ALT TEXT END.

Therefore, potential participants do not have sufficient, explicit, or transparent information in order to be suitably informed about this study. It is not clear to any potential participant who is responsible for releasing the data from this study in the future, and prospective participants cannot possibly be made sufficiently informed as the committee has not been set up ahead of participant sampling.

It is also not stated how many Autistic people would be on the Steering Committee, whether they would have majority say, or how many would represent the intersectionality of our Autistic community (e.g., Black people; people of colour; those with a learning disability; non-speaking Autistic people; gender and/or sexuality diverse people; etc.).

This study has been advertised to the public on the news, and Autistic ambassadors have been recruited to endorse this study, all prior to forming the Steering Committee. Further, the S10K social media account has told the public that a consortium has not yet been formed, when this is blatantly false (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-autistic-traits).

PLAIN LANGUAGE SUMMARY: We have not been told who makes the decisions to give researchers we do not know the saliva (spit) information Autistic people might give them for this study. People cannot consent (agree) to take part in this study because the study people are saying it will give researchers we do not know in the future our saliva (spit) information.

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “Q: Will sharing the data with others mean that it can be used by future studies which can be eugenics-based even if this isn’t?

No data will be shared without stringent oversight and governance. An internal study Steering Committee comprised of the senior scientific 12/”. ALT TEXT END

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “investigator team and suitably qualified experts, including autistic individuals, will review and oversee any requests to access data. To access any anonymised data collected by us researchers will have to submit a full proposal, which then will have to be approved by the 13/”. ALT TEXT END

ALT TEXT: Screenshot of Spectrum10K @Spectrum_10K tweet: Aug 24, reads: “dedicated panel. To be approved it must align with our aims of no cure, no eugenics, not harmful etc. and have value to science and the autism community. 14/”. ALT TEXT END

Further, it has not been made transparent, explicit, or clear what the definitions of “no cure, no eugenics, not harmful etc.” are. Critically, it is not clear who the research study members believe has the authority to determine what is and is not harmful. Many Autistic people would argue it is Autistic people who should determine what constitutes harm.

This is why it is imperative that participants know who is represented on the Steering Committee before consenting. There is a history of research that has caused harm even when people believe that it has “value to [the] science and autism community” (Reference https://twitter.com/Spectrum_10K/status/1430198220244783105?s=20 – SEE ABOVE PICTURE WITH ALT TEXT). Autistic people deserve to know who is in control of their genetic data and what the Steering Committee would define as valuable, what they would define as eugenics, what they would define as not harmful, and what they would define as “no cure.” For example, would a drug “treatment” for autism be considered a cure to this Steering Committee? Participants will have to make assumptions instead of being provided thorough, explicit, transparent, and clear information about what the criteria is for using this database.

PLAIN LANGUAGE SUMMARY: We have not been told who is in charge of making decisions for this study (called a steering committee because they are supposed to steer decisions and choices for what to do), and so we cannot know what the study people think Autistic people care about. They might think we want something that we do not want, and they might want things that actually end up hurting Autistic people, or even meaning that Autistic people are not born in the future.

FEARS AROUND EUGENICS AND INTERVENTIONS:

There are genuine and well publicised fears amongst the Autistic community around eugenics-based science and the potential development of ‘screeners’, such as those used to give pregnant parents the opportunity to abort children with Down Syndrome and other genetic differences.

The fear is that genetic prenatal screenings would be used to identify Autistic babies in utero and give parents the opportunity to abort them. 

The grant awarded to the researchers involved in S10K was for the collection of 10,000 DNA samples of Autistic people, stating the study will: 1) “identify several genetic variants that contribute to the development of autism”; 2) “investigate if there are any genetically-defined subgroups of people with autism”; and 3) “Improve on existing methods for diagnosing autism” (link – “Wellcome grants awarded 1 October 2005 to 30 June 2021 as at 12072021” – https://wellcome.org/reports/grant-funding-data-2019-2020#downloads-3747).

The S10K study has not explained these aims to the public, and this GWAS grant award does not mention anything regarding improving Autistic people’s wellbeing or focusing specifically on co-occurring conditions rather than only autism. However, S10K is publicising that these are the purpose of the study. The actual description of the grant application that was awarded states “The proposed research aims to accelerate the discovery of common, low frequency, and copy number variants in autism and autistic traits” without any mention of improving Autistic people’s well-being or researching co-occurring conditions. This lack of transparency regarding what this data will be used for in the future, and the lack of transparency of what has been stated it will be used for based on the awarded grant summary description, is clearly unethical.

It is important to note that the original summary for the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium grant awarded for this project (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-Autistic-traits – SEE BELOW PICTURE WITH ALT TEXT) is solely focused on identifying “several genetic variants that contribute to the development of autism”, and does not mention “co-occurring conditions”, as S10K have stated on Twitter. Further, they have plans to combine the 10,000 genetic dataset they collect with 90,000 other Autistic people’s DNA to specifically “identify several genetic variants that contribute to the development of autism”. It also states that this study will “investigate if there are genetically-defined subgroups of people with autism” without mentioning anything about co-occurring conditions. If these researchers already have funding to do this, and this is planned, participants have a right to know about it. However, none of this information is anywhere on their website, the Participation Information Sheet, or the consent forms.

ALT TEXT: Screenshot of Wellcome.org funding award, reads: 

“Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium

Collaborative Awards in Science; Year of award: 2018; Grantholders: Prof Simon Baron-Cohen, University of Cambridge, United Kingdom; Dr Matthew Hurles, Wellcome Sanger Institute, United Kingdom; Prof Daniel Geschwind, University of California, Los Angeles, USA; Prof David Rowitch, University of Cambridge, United Kingdom.

Project summary

Autism is a lifelong developmental condition and about 1% of the population is thought to have the condition. It is largely genetic and between 400 and 1,000 genes are thought to contribute to autism. However, fewer than 100 genes with a link to autism have been identified.

We will accelerate gene discovery by collecting DNA samples from 10,000 people with autism in the UK and their immediate families. We will combine this information with genetic information from 90,000 other people with autism already gathered from around the world. This large-scale resource will enable us to identify several genetic variants that contribute to the development of autism. This information will allow us to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism.” ALT TEXT ENDS.

Another fear is that early or in-utero screenings would encourage identification of an Autistic person and then psychological interventions from an early age to normalise an Autistic child through the use of behavioural therapies and social skills training, known to correlate with post-traumatic stress responses and symptoms (Kupferstein, 2018).

The project only attempts to alleviate those fears by stating that in itself the project does not agree with eugenics, and that data will only be passed onto projects that meet the same standards of ethics S10K apply to themselves, which as stated are vague, opaque, and obfuscated (obscure).  

PLAIN LANGUAGE SUMMARY: Autistic people are worried that even though S10K say they are against eugenics (science that tries to control the human population by getting rid of certain people/features they decide they don’t want) and are focused on the well-being of Autistic people, we feel like we are being lied to because when we look at what they have said or written more closely, there is nothing about helping Autistic people and their wellbeing.

What they have written about is finding the cause of autism and why Autistic people are born Autistic. They have already collected a very large number (90,000) of Autistic people’s DNA (DNA is small, invisible information inside our bodies), and so we don’t understand why they need 10,000 more Autistic people and their DNA information, but we do know that DNA information is very valuable.

The project people are telling us that the DNA information will be used for other studies and by businesses in the future, but we do not know who will use our valuable and important DNA information in the future. We also don’t know if our DNA information will be used to make an autism test that pregnant people can use so that they can decide not to have an Autistic baby. This has happened for another group of people who have something called Down Syndrome, and it has meant that lots of these people have not been born. We are scared this will happen to Autistic people too, and we don’t want Autistic people to stop being born.

DEHUMANISING NARRATIVES, RHETORIC, AND RESEARCHERS’ CONFLICTS OF INTEREST:

Dehumanising rhetoric (https://theAutisticadvocate.com/2020/02/regarding-the-use-of-dehumanising-rhetoric/): the way in which autism and Autistic people are spoken about by the S10K project and its key researchers is a clear indication of the attitudes driving this projects aims as stated in the funding awarding body (https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-Autistic-traits)

It is impossible to trust the S10K project when its key researchers hold public attitudes like the following:

“Autistics lack the quintessential part that makes us human” (Simon Baron-Cohen referring to his misperception that Autistic people lack empathy; https://docs.autismresearchcentre.com/papers/2001_BC_review.pdf)

“If you’re interested, even in a more abstract way, in human behavior and human cognition, autism is an extraordinary window into that. [Autism] involves dysfunction in social cognition, language ― the things that are really part of what makes us human” (Daniel Geschwind  https://www.spectrumnews.org/news/profiles/daniel-geschwind-after-many-detours-on-the-trail-of-autisms-genetics/).

The men leading the Spectrum 10K project have defined Autistic people as inhuman or not human. Yet these are the people responsible for policing the ethical standards of this study, and they do not view us as human.

PLAIN LANGUAGE SUMMARY: Autistic people do not trust the people leading this project because they have publicly said some very worrying things about Autistic people in the past. They have said things like Autistic people are not human.

THERE ARE FURTHER CONCERNS ABOUT THOSE LEADING THE PROJECT:  

Simon Baron-Cohen is known for having created (now debunked) theories that have caused the most harm to Autistic people, particularly women, people of marginalised genders, and some boys and men who do not meet the narrow stereotype Baron-Cohen endorses and perpetuates. Simon Baron-Cohen’s debunked “theory of mind”, “extreme male brain”, and “systemising-empathising” theories of autism are responsible for the inaccurate and damaging stereotypes that exist about Autistic people and our experiences. He has fed the rhetoric that we have no empathy, that only, or largely only, boys/men/males are Autistic. This has led to whole lost generations of Autistic people. There are thousands if not hundreds of thousands of Autistic people whose mental health have been damaged by not knowing they are Autistic or discovering this later in life because they do not fit his narrow view of “subgroups” he hopes to maintain (still propagated by him through book sales; Gernsbacher, 2019).

Daniel Geschwind leads an organisation called the Centre for Autism research and Treatment, he personally has a history of animal testing (particularly focusing on ‘Autistic mice’ research, often derided amongst the Autistic community), stem cell research looking for causes and interventions for Autism; and CART that invoke the use of Applied Behavioural Analysis for behaviour modification (a method known to increase the likelihood of PTSD; Kupferstein, 2018).

Both men have strong links to organisations abhorred by many members of the Autistic community, such as Autism Speaks and AIMS-2 Europe. Geschwind was the first chair of an organisation called Cure Autism Now, which later merged with Autism Speaks with whom he has a very long and close association.

There is so much historic mistrust of Simon Baron-Cohen within the Autistic advocacy and academic communities for many valid reasons; and now the same with Daniel Geschwind. There is also mistrust and opposition to many of the organisations both men are associated with currently – as such we are confused as to why there was no thought to alleviate concerns prior to this. 

Matthew Hurles, who is a researcher on the GWAS grant, leads the Prenatal Assessment of Genomes and Exomes (PAGE) Study, which investigates “the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening” (link – https://www.sanger.ac.uk/person/hurles-matthew/). Further, Matthew Hurles has a start-up company called Congenica Ltd seeking “to provide sustainable genetic diagnostic services to the NHS and other healthcare providers.” This is clearly a conflict of interest but has not been told to participants regarding future research that may occur. Participants have a right to know which researchers may gain access to their dataset and what other research interests they may have surrounding autism with real potential concerns for prenatal screening tests to be implemented from the analysis of this data.

ALT TEXT: Screenshot of Mathew Hurles biography.

In a recent overview of the history of theorising about autism, Vivanti and Messinger (2021, p. 8) offer a concluding statement that highlights our concerns outlined above:

“Theories—whether explicit or implicit—shape the questions that researchers ask, the methods they use to test them, and the way the resulting data are interpreted. They also guide the work of practitioners and policy-makers, and influence societal attitudes and opinions… [R]esearch efforts need to extend beyond the biological and behavioral features of autism, and examine the explicit and implicit theories that guide individuals, systems and institutions interfacing with autism, in the effort to creating a more autism‐friendly society”.

The S10K is ignoring the advances in discussion around humanising Autistic people and asking us what we want when it comes to research about us.

PLAIN LANGUAGE SUMMARY: The men leading the S10K project have a very poor history and attitude towards Autistic people. The work they have done has caused lots of damage and hurt to Autistic people. We believe they do not understand Autistic experience or want to work with Autistic people to understand Autistic experience, but are focused on “curing autism” and/or stopping Autistic people being born.

CO-PRODUCTION:

Academia is starting to accept that the most valid form of research not only incorporates Autistic voices, but engages in co-production, where ideas are formulated by advocates and academics together, then applied by advocates and academics. Simon Baron-Cohen sits on the editorial boards for the academic journals ‘Autism’ and ‘Autism in Adulthood’, an immensely important practice in academic publishing that comes with an enormous amount of responsibility and knowledge of the narratives around autism. Indeed ‘Autism’ has just published a whole new set of publishing guidelines directed at both uplifting Autistic voices and prioritising the Autistic community’s priorities for research, and the latter has publishing guides around co-production based on the work of AAspire (Academic Autism Spectrum Partnership in Research and Education).  

There is no evidence of co-production in any of the S10K project and, despite repeated questioning, there has been no confirmation that openly Autistic, or any Autistic researchers have been involved in the creation or design of the study; only that an advisory panel that met 1-2 times a year, and included only 4 Autistic people out of 11 people (5 non-autistic parents and 2 non-autistic clinicians), and they have not given information about whether these Autistic people are researchers. Given they are hoping to collect DNA data from 10,000 Autistic people, there is no excuse for not including Autistic people at every level of the project.

A recent (since the announcement of the study) request by a member of the Autistic community to join the S10K Patient and Public Involvement group (PPI – a group that represents stakeholders affected by the research) was turned down with this statement:

“We are actively planning to expand our control group. We ideally want to include more Autistic participants from Spectrum 10k to ensure that the research is co-designed.  However, this may happen later, say 6 months later.”

ALT TEXT: Screenshot of anonymised email response from S10K when asked to join the S10K Patient and Public Involvement group. Reads:

“We are actively planning to expand our control group. We ideally want to include more Autistic participants from Spectrum 10k to ensure that the research is co-designed. However, this may happen later, say 6 months later.”

Participants in a study should not also be participants in the PPI group. Clearly Autistic people have not been involved in the formulation and application for the grant for this project. If people are being asked to co-design the research in 6 months’ time, this calls into question what S10K has received funding for.

There is phenomenal mistrust among many Autistic people of autism research. The aims and priorities of much research is focused on biology and behavioural interventions with very little focused on quality-of-life outcomes from an Autistic perspective.

The S10K research project does not meet the basic recommended inclusive guidelines or standards of either of the two journals the lead researcher Baron-Cohen sits on the editorial boards of.

PLAIN LANGUAGE SUMMARY: S10K do not have enough Autistic people guiding the project. They said they will only consider Autistic people in 6 months’ time when people have given their DNA information to them already. This means that they are picking people who have a good opinion of S10Ks work so it is not fair or balanced. Simon Baron-Cohen is very important in Autism research and a group he is in recently published guides about including Autistic people and what they want in all research, but the S10K project that he co-leads does not do that.

QUALITY OF LIFE:

There has been much talk by the S10k project regarding quality of life for Autistic people. The project claims to want to improve the mental health and wellbeing of Autistic people, but at no point does it substantiate what this means.  

There is little evidence to show that the S10k project understands what good quality of life for Autistic people looks like, or how the study would achieve this.

There is no explanation or transparency as to what constitutes Autistic quality of life or who is making the decisions as to what constitutes Autistic quality of life for this project. Given there are no Autistic people substantially involved in the study set up so far, any consideration as to what constitutes Autistic quality of life will have been made by non-autistic researchers.

We already have substantial evidence as to why Autistic people have poor mental health. For example, we are more likely to be victims of abuse – a study that Baron-Cohen himself co-authored (Griffiths, et al., 2019).

To quote Baron-Cohen (BBC Breakfast, Tuesday 24th of August 2021):

“They [participants] just spit in a tube, send it back to us so we can look for the genetic causes of autism.”

It is entirely disingenuous for Baron-Cohen to claim that we do not know why some Autistic people have poor mental health, and for the study to state a wholly tenuous link between collecting Autistic people’s DNA in order to determine genetic foundations of autism and Autistic wellbeing/quality of life.

Further, Baron-Cohen mentioned nothing about looking for the genetic causes of poor mental health (a vague term); depression; or sleep difficulties to solve quality of life problems.

The public project materials claim that sleep quality, anxiety and depression are all rooted in genetic factors. These claims are largely erroneous and have no strong empirical evidence to support them. We would be extremely interested to see the evidence that supports the claims with which this project is founding many of its premises on.

The S10K project is clearly operating from a pathology paradigm (Walker, 2016) perspective. This is in direct conflict with the perspective of the actually Autistic community who overwhelmingly prescribe to the neurodiversity paradigm and the social model of disability (Gray-Hammond, 2021).

PLAIN LANGUAGE SUMMARY: S10K have not told us what they mean by Autistic quality of life and wellbeing, or who is deciding this, but we do know it is not Autistic people making the decision or even being asked.

S10K already know what contributes to poor Autistic mental health and wellbeing and this information is not in our DNA. Autistic people know that environment (people, places, things, life experiences, surroundings, abuse, poor support systems etc) are the main issues for mental health and wellbeing.

IGNORING RECENT RESEARCH AND THE AUTISTIC COMMUNITY PRIORITIES:

Much focus in academic research in the last few years has turned to marginalisation, stigma, and the role of society in the poor mental health and well-being outcomes of Autistic people, but S10K seems to have conveniently ignored this to justify DNA collection solely from Autistic people. 

If co-occurring conditions (S10K highlights epilepsy for example) are at the heart of the biological purpose of the S10K study and genetic in nature, and DNA samples are being collected on that basis, why is the study not based on the outlined co-occurring conditions and include non-autistic participants who also have issues with those factors. If the claim is about well-being and that some well-being factors are co-occurring conditions, then why are only Autistic people being targeted? 

Not only is this perplexing and confusing and another glaring concern, we firmly believe it highlights a disconnect between this project and the community it allegedly seeks to serve. It also points overwhelmingly to dishonest intentions, particularly as the funding summary focussed solely on “identif[ying] several genetic variants that contribute to the development of autism…to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism”.

PLAIN LANGUAGE SUMMARY: S10K are saying they want to investigate co-occurring conditions that some Autistic people have, like epilepsy, but they only want DNA from Autistic people and their relatives, not from non-autistic people who also experience epilepsy. This makes us feel like they are not telling the truth. But if they are looking for the cause or to cure autism then what they are saying would make sense, but as we’ve explained, if they are looking for Autism in our DNA information in our bodies this not what Autistic people want.

SUBTYPES:

One of the claims made by the project is that it is necessary to identify subtypes in Autistic presentation in order to identify if people are more susceptible to various co-occurring conditions. This is something we greatly refute.

The debate around subtypes in Autistic presentation has existed since early categorisation of Autistic experience. Subtypes were removed from the diagnostic criteria for both empirical and political reasons. 

The recent diagnostic manuals (DSM5 and ICD11) updated their definitions for autism spectrum disorder to remove the issues found in early definitions that sought to subtype, subgroup, and/or subcategorise Autistic people. This was done based on years of evidence that Autistic people move in and out of subcategories, rendering them invalid and impractical (Wodka, Mathy, & Kalb, 2013). This included the decision to remove Asperger’s as a separate diagnosis.  

Subgrouping could potentially be used to separate Autistic people into groups which are deemed “low-functioning” (“from learning disabilities”), or valueless to society, or “high-functioning” (“through to talent”; BBC Breakfast with Simon Baron-Cohen, Tues 24th Aug, 2021; & https://adminoxy.com/project-coordinator-fixed-term,i5868.html ) and therefore have value to society. Given the consideration and evidence used to come to the decision to remove subtyping from diagnostic manuals (a decision that included Autistic people’s input), and allow for a more nuanced diagnosis, subtyping would for many Autistic people and their families be a very unwelcome step backwards.

PLAIN LANGUAGE SUMMARY: Subgroups (putting people into different groups) are harmful to Autistic people and are not correct. Scientists have been trying to use subgroups since autism was first talked about and it has not worked. Once we removed subgroups much more learning has happened in understanding Autistic experience. We believe Simon Baron-Cohen wants to bring back subgroups as a lot of his old work is based on this even though it’s not helpful to Autistic people. We don’t want Autistic people grouped based on whether other people think they are useful or not useful. We do not want to split up the community because each Autistic person is totally unique and valued.

AMBASSADORS:

At launch, S10k made good use of celebrity endorsers via social media and television and radio marketing.

We feel this is a very transparent marketing attempt to assuage people’s concerns, pacify advocates and paint a picture of trustworthiness. The celebrity ambassadors do not convey any in-depth knowledge of the project, they appear to be reading from scripts and when publicly pressed about concerns, one responded:

“I asked lots of questions, why don’t you do that too?”

The use of celebrity endorsement creates an impression that the S10k project assumes that Autistic people, parents, and carers are not capable of doing their own research or making their own decisions, and that providing ‘safe’ faces and voices will mitigate worries and questions. This is not only extremely patronising and ableist, but a perfect example of the extreme privilege in academia.

Autistic people, parents, and carers are not able to make an informed decision all the while the information is gatekept, and the documents available are purposefully convoluted, confusing, and misleading, obfuscating (obscuring) the project’s aims and objectives. 

We also have great concern over the actions of these ‘Ambassadors’ and the way they have acted on social media.

One of the Autistic ambassadors has an open record of racism, transphobia, and far right commentary on their social media and reacted aggressively to those who challenged the validity of this research.

A celebrity Ambassador has made the assertion that those who oppose this research are in some way anti-science, or fearful of science and conspiracy theorists – even when many of those opposing this research are scientists and advocates who work alongside and within academia. He has also given out information that directly contradicts that given out by the project.

Others have been dismissive of concerns and when pushed have deleted social media posts rather than answer questions.

The way the ambassadors have responded to genuine and factually based criticism of this project is, to us, indicative of the intent of the project. There are very real concerns and fears out there, and for those to be dismissed and told that critiquing this project is anti-science is another level of the marginalisation, invalidation, and dehumanisation faced by Autistic people on a daily basis and is being recognised now by research.

It also feels complicit: that there is something to hide.  It is very easy to make the logical leap that the thing hiding is the endgame of the project: that it will act as a gateway to the fears mentioned earlier around eugenics, screening tools, and interventions. Not to mention the concern over who will own whole copies of individual people’s genomes in the future, because of this project.

Another concern about the ambassadors is the inclusion of Autistica and its listing as an advocacy organisation. Autistica are a controversial organisation for the Autistic community, for similar reasons to those stated in this document and further, more complex ones less relevant to this statement.

Further to the lack of Autistic involvement in the process of creating this research: on the BBC television launch of this project not a single Autistic person was included.

When a known and respected Autistic community advocate was invited to an early BBC4 radio interview about the project, armed with her logical questions, she was railroaded by the presence of Baron-Cohen himself and given no opportunity to put her questions to him. As an Autistic person she was deeply distressed that she had not been informed that Baron-Cohen himself would be there and was not given the chance to ask her questions – changes like this are cruel to an Autistic person who was given expectations of how the interview was to proceed.

Again, we suggest this provides further evidence of the extreme disconnect between the project leaders and the community they seek to research.

PLAIN LANGUAGE SUMMARY: We think S10K are using famous people to trick people into thinking that they are safe, and that we should trust them. Some of the ambassadors (people promoting the S10k project) haven’t been very nice to people who have asked them questions about the project, and they have all recently stopped talking about the project. The ambassadors are not very knowledgeable about the S10K project, so we don’t trust them.

When the study people went on television to talk about their project, they didn’t invite Autistic people to hear what they thought of their ideas, and when they did invite an Autistic person on the radio, they did not let them speak and ask their questions about the project and their worries about it.

CONCLUSION:

Much around this project, including the aims and objectives and answers when questioned, are vague and contradictory. As a collective we are astounded this project received funding and ethical approval.  

We have concluded that the materials approved for public dissemination are inconsistent, ambiguous, non-specific, and quite simply, have too many aims to be a viable study.  

The materials make too many nebulous claims about what the study will achieve; achievements that genetic studies dedicated to individual experiences such as Ehlers Danlos Syndromes; ADHD; depression etc. have not been able to accomplish in (sometimes) decades.

We assume the aims and objectives must have been made very clear to funding bodies, but the fact that they have not been made explicitly clear to the public is hugely concerning. The confusing and often chaotic nature of explanations and responses leaves us as a collective gravely concerned at the methodology and veracity of this research, especially when there is historical precedent for prenatal screening tests for disabilities that are not life-threatening, such as Down Syndrome.

As one academic put it:

“My sense is that genetics research projects like Spectrum 10k are requiring Autistic people to have a level of trust in autism research that most autism researchers absolutely have not earned.”

Our concerns around this, as both Autistic and non-autistic advocates, academics, and professionals are enormous and as a result we cannot support or condone this research in any way; and indeed, we will actively warn Autistic people, parents, and carers away from taking part.

We also question the funders and ask why such a clearly overly optimistic, woolly, and unclear project has been funded, and how it has passed any ethics boards.

In short, it is, at best, a study lacking not only Autistic co-production, but also lacking a thorough understanding of Autistic experience and wellbeing. At worst, this is a thinly veiled attempt to DNA data mine at the expense of the Autistic community.

PLAIN LANGUAGE SUMMARY: We are very, very worried. Everything that has been talked about or written about this project is confusing and not clear. We don’t see how this can be a good study that will help Autistic people when it’s so confusing and doesn’t involve enough Autistic people. We haven’t been asked if we want this study done or how we feel about it.

We think this study got money by saying one thing, but it looks like they are doing something else with it. This feels like lying.

We’re worried that our spit (which contains our valuable, invisible DNA information that researchers can see with special equipment) could be used to hurt Autistic people or stop Autistic people being born in the future.

We feel like S10K do not understand Autistic people and that they want to sell the information they get from our spit.

We do not support this study and we will tell people why and hope that they will also not support or take part in the study.

DEMANDS:

Due to the above, we insist on the full publication of the full application as it was approved for funding, in order for full transparency of this study to be reached.

We also insist on the re-evaluation of the study by the ethics awarding body.

PLAIN LANGUAGE SUMMARY: We are asking that some other people look at this study to make sure there is no lying or hiding things from the public and that it is not dangerous to Autistic people either now or in the future.

We also want to see the paperwork and files that tell us what this study is actually about because S10K are not being clear or making a lot of sense.

END

As well as signing this statement below – which will be sent to Health Research Authority and the bodies that awarded S10K funding – please consider signing the following petition https://www.change.org/p/university-of-cambridge-stop-spectrum-10k?utm_content=cl_sharecopy_30481620_en-GB%3A4&recruited_by_id=264d2700-09af-11ec-8010-8d53b4d8f0ca&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial

This Boycott S10K statement was researched and written by the following Autistic people: 

Signed:

Aucademy

  • Dr Chloe Farahar
  • David Gray-Hammond (Emergent Divergence)
  • Northern Autie
  • Tigger Pritchard (Tigger Training, and The Autistic Coffee Shop with Tigger Pritchard)
  • Annette Foster
  • Kieran Rose (The Autistic Advocate)
  • Emma Dalmayne (Autism Inclusivity Meets)
  • Autistic Science Person
  • Jodie Isitt (The Nurture Programme)
  • Bobbi Elman (Neurodivergent Autism Support)
  • Jodie Smitten (Jodie Smitten, Children’s Well-being Practitioner & Autism Specialist)
  • Dr Monique Botha
  • Tanya Adkin (Tanya Adkin – Autistic children and young person’s advocate)
  • Katie Munday (Autistic and Living the Dream, @Social_Parasite)
  • Mel Duncan (Gecko Community: Alternative Education Providers)
  • Eliza Fricker (Missing the Mark)

Plain language summary for the Boycott Spectrum 10K statement by Autistic people

This is the plain language summary for a letter written by lots of Autistic people who are upset about a new study called Spectrum 10K, which was talked about for the first time on the news and social media on Tuesday 24th August 2021.

This letter – also called a statement – is about why we are upset about this new study, and we want as many Autistic people and their friends and family to read why we are upset. If people agree that this study sounds wrong and believe like we do that it is not a good or safe study for Autistic people, then we are asking people who are able to, to sign our statement (letter) to say they agree with us, and to show they support us asking for the study to be changed or even stopped from happening.

The full statement (letter) including where you can sign if you say you agree with our statement can be found HERE.

There is a dedicated @BoycottSpect10K account on Twitter, and you can find Autistic people discussing the study via the hashtag #StopSpectrum10K

BACKGROUND:

Lots of people, including Autistic professionals and the public, are worried about the ethics (how moral or right something is for humans) of a new study that has not been clear about how it will help Autistic people.

Lots of Autistic people, and Autistic professionals, and the public want good studies to be done that will help Autistic people with things they struggle with, and things that mean they have poor wellbeing.

Lots of people are worried that this new research study will not do this because the people in charge of the study have not been clear about what the study is doing, and we want them to be clearer and not lie or hide information.

We want the study to be very clear, with simple language, about how Autistic people giving them saliva (spit) will be used to improve Autistic people’s lives. We also want them to be clear about who they will be giving the information to in the future in case we do not trust the people they want to give our information to.

CONSENT:

A study information and consent form is a typed or written letter that explains what researchers are asking people to do in their study. If the researchers are very clear about what they are doing in their study, then people can agree (called consent) to take part in the study and do the things the researchers are asking them to do.

For this study we think the researchers have not been clear about the reasons and aims of their study, which is like hiding or lying about what they are actually doing, and they have used different words that mean different things, which confuses people. When people are confused and not told things clearly, they cannot agree to the study as they do not have all the information or facts about it.

Lots of Autistic professionals and the public have looked at the typed and written information from the researchers of this study and do not think it sounds safe for Autistic people to take part.

STEERING COMMITTEE NOT FORMED:

We have not been told who makes the decisions to give researchers we do not know the saliva (spit) information Autistic people might give them for this study. People cannot consent (agree) to take part in this study because the study people are saying it will give researchers we do not know in the future our saliva (spit) information.

We have not been told who is in charge of making decisions for this study (called a steering committee because they are supposed to steer decisions and choices for what to do), and so we cannot know what the study people think Autistic people care about. They might think we want something that we do not want, and they might want things that actually end up hurting Autistic people, or even meaning that Autistic people are not born in the future.

FEARS AROUND EUGENICS AND INTERVENTIONS:

Autistic people are worried that even though S10K (the short name for the Spectrum 10K study) say they are against eugenics (science that tries to control the human population by getting rid of certain people/features they decide they don’t want) and are focused on the well-being of Autistic people, we feel like we are being lied to because when we look at what they have said or written more closely, there is nothing about helping Autistic people and their wellbeing.

What they have written about is finding the cause of autism and why Autistic people are born Autistic. They have already collected a very large number (90,000) of Autistic people’s DNA (DNA is small, invisible information inside our bodies), and so we don’t understand why they need 10,000 more Autistic people and their DNA information, but we do know that DNA information is very valuable.

The project people are telling us that the DNA information will be used for other studies and by businesses in the future, but we do not know who will use our valuable and important DNA information in the future. We also don’t know if our DNA information will be used to make an autism test that pregnant people can use so that they can decide not to have an Autistic baby. This has happened for another group of people who have something called Down Syndrome, and it has meant that lots of these people have not been born. We are scared this will happen to Autistic people too, and we don’t want Autistic people to stop being born.

HURTFUL LANGUAGE AND IDEAS ABOUT AUTISTIC PEOPLE:

Autistic people do not trust the people leading this project because they have publicly said some very worrying things about Autistic people in the past. They have said things like Autistic people are not human.  

CONCERNS ABOUT THOSE LEADING THE PROJECT:  

The men leading the S10K project have a very poor history and attitude towards Autistic people. The work they have done has caused lots of damage and hurt to Autistic people. We believe they do not understand Autistic experience or want to work with Autistic people to understand Autistic experience, but are focused on “curing autism” and/or stopping Autistic people being born.

NOT WORKING WITH AUTISTIC PEOPLE:

S10K do not have enough Autistic people guiding the project. They said they will only consider Autistic people in 6 months’ time when people have given their DNA information to them already. This means that they are picking people who have a good opinion of S10Ks work so it is not fair or balanced. Simon Baron-Cohen is very important in Autism research and a group he is in recently published guides about including Autistic people and what they want in all research, but the S10K project that he co-leads does not do that.

QUALITY OF LIFE:

S10K have not told us what they mean by Autistic quality of life and wellbeing, or who is deciding this, but we do know it is not Autistic people making the decision or even being asked.

S10K already know what contributes to poor Autistic mental health and wellbeing and this information is not in our DNA. Autistic people know that environment (people, places, things, life experiences, surroundings, abuse, poor support systems, etc.) are the main issues for mental health and wellbeing.

IGNORING RECENT RESEARCH AND THE AUTISTIC COMMUNITY PRIORITIES AND CONCERNS:

S10K are saying they want to investigate co-occurring conditions that some Autistic people have, like epilepsy, but they only want DNA from Autistic people and their relatives, not from non-autistic people who also experience epilepsy. This makes us feel like they are not telling the truth. But if they are looking for the cause or to cure autism then what they are saying would make sense, but as we’ve explained, if they are looking for Autism in our DNA information in our bodies this not what Autistic people want.

SUBTYPES AND SUBGROUPS:

Subgroups (putting people into different groups) are harmful to Autistic people and are not correct. Scientists have been trying to use subgroups since autism was first talked about and it has not worked. Once we removed subgroups much more learning has happened in understanding Autistic experience. We believe Simon Baron-Cohen wants to bring back subgroups as a lot of his old work is based on this even though it’s not helpful to Autistic people. We don’t want Autistic people grouped based on whether other people think they are useful or not useful. We do not want to split up the community because each Autistic person is totally unique and valued.

AMBASSADORS:

We think S10K are using famous people to trick people into thinking that they are safe, and that we should trust them. Some of the ambassadors (people promoting the S10k project) haven’t been very nice to people who have asked them questions about the project, and they have all recently stopped talking about the project. The ambassadors are not very knowledgeable about the S10K project, so we don’t trust them.

When the study people went on television to talk about their project, they didn’t invite Autistic people to hear what they thought of their ideas, and when they did invite an Autistic person on the radio, they did not let them speak and ask their questions about the project and their worries about it.

CONCLUSION:

We are very, very worried. Everything that has been talked about or written about this project is confusing and not clear. We don’t see how this can be a good study that will help Autistic people when it’s so confusing and doesn’t involve enough Autistic people. We haven’t been asked if we want this study done or how we feel about it.

We think this study got money by saying one thing, but it looks like they are doing something else with it. This feels like lying.

We’re worried that our spit (which contains our valuable, invisible DNA information that researchers can see with special equipment) could be used to hurt Autistic people or stop Autistic people being born in the future.

We feel like S10K do not understand Autistic people and that they want to sell the information they get from our spit.

We do not support this study and we will tell people why and hope that they will also not support or take part in the study.

DEMANDS AND WHAT WE WANT TO HAPPEN NEXT:

We are asking that some other people look at this study to make sure there is no lying or hiding things from the public and that it is not dangerous to Autistic people either now or in the future.

We also want to see the paperwork and files that tell us what this study is actually about because S10K are not being clear or making a lot of sense.

If you think you understand why we are worried about this study, and agree that people should check whether it is a good study or a bad study that might hurt Autistic people than please sign our full statement letter, which you can find here

This Boycott S10K statement was researched and written by the following Autistic people: 

Signed:

Aucademy

  • Dr Chloe Farahar
  • David Gray-Hammond (Emergent Divergence)
  • Northern Autie
  • Tigger Pritchard (Tigger Training, and The Autistic Coffee Shop with Tigger Pritchard)
  • Annette Foster
  • Kieran Rose (The Autistic Advocate)
  • Emma Dalmayne (Autism Inclusivity Meets)
  • Autistic Science Person
  • Jodie Isitt (The Nurture Programme)
  • Bobbi Elman (Neurodivergent Autism Support)
  • Jodie Smitten (Jodie Smitten, Children’s Well-being Practitioner & Autism Specialist)
  • Dr Monique Botha
  • Tanya Adkin (Tanya Adkin – Autistic children and young person’s advocate)
  • Katie Munday (Autistic and Living the Dream, @Social_Parasite)
  • Mel Duncan (Gecko Community: Alternative Education Providers)
  • Eliza Fricker (Missing the Mark)

Guest Educators

Find here a growing list of Aucademy educators and the topics they covered. Listed in alphabetical order according to surname.

Our permanent educators and presenters have their own pages, and have covered topics such as: what *is* autism?; the spectrum really; Autistic challenges and strengths; the importance of Autistic identity, culture, community, and space for wellbeing; the importance of language; late discovery; psychosis; addiction; stigma; mental health; the importance of media for wellbeing; Autistic pride; harmful stims and self-harm; disclosing one’s Autistic identity; boundaries; Autistic people and crime; gender, sexuality, and de-gendering Autistic experience; etc. – all sessions found on our YouTube.


Tanya Adkin

Tanya Adkin is SEND Advocate. Tanya is also a late identified Autistic, ADHD (possibly PDA), single parent to two Autistic/PDA/ADHD children.

Find Tanya and EHCP advice via her page seND Family Instincts on Facebook and the internet.

Topics: Autistic EHCP & SEND support ~ What *is* autism?: “autism” versus Autistic theories ~ Neurodivergent relationships


Senka Aileen

Senka was born in Vancouver BC Canada where she grew up free-range in the rain forests and ocean shores of the west coast . Currently, she is a PhD graduate student at the University of Victoria. She is also raising and home schooling her oldest granddaughters who are diagnosed autistic. Through learning about her granddaughters’ experience of being Autistic, Senka has recognized autism and PDA in herself along with ADHD and situational mutism. During her time in university Senka had to devise strategies to manage her differences including the ongoing presence of SM. Senka feels there needs to be a greater acceptance of non-verbal communication as viable and significant and that less emphasis should be placed on verbal articulation and communication.

Topics: Situational mutism


Duante “SuitMan” Barnett

Duante (he/him) “SuitMan” Barnett a Seattle, WA native. He produces SuitMan Productions and his first original show idea Deaf Comedy Jam was inspired by his own hearing loss and offers a show that unites both the hearing and non-hearing communities. A staple of the Annual Northwest Black Comedy Festival for 3 years where he was awarded “Best Podcast” of 2020 and “Best Host” of 2021. Places like Laugh Comedy Club’s Laugh Off, Jai Thai’s Comedy Clash & a number of pacific northwest artists know his influences and creativity of production.

Topics: Autistic people, humour, & comedy


Anna Barzotti

Anna Barzotti studied creative arts at Manchester Metropolitan University, creative writing at Chichester University and screenwriting in New York. Anna has worked in health, education and arts settings in roles spanning theatre performer, arts and health coordinator, workshop facilitator, researcher and writer. She has worked as a specialist mentor for autistic students since 2017 and is currently writing a book about her experiences as a late-diagnosed autistic adult.

Topics: Communicating away the barriers


Dr Mordehai Benhamou

Dr. Mordehai Benhamou – author, lecturer, professional guitarist, and Algerian Jew from Israel.

Topics: Dr Mordehai Benhamou on being Autistic in Israel


Louis Bishopp-Ford

Louis Bishopp-Ford was diagnosed Autistic with attention differences as an adult. He believes not knowing he was Autistic when he was younger meant that he could not ask for the support he needed to complete a university degree. Now that he knows about the support he needs, he is currently in his final year of an English and Creative Writing undergraduate degree, and hopes to write better fiction once he finishes! Louis has contributed to a non-fiction chapter in the Neurodiversity Reader https://www.pavpub.com/mental-hea…/th…

Topics: The importance of gaming for neurodivergent people ~ Attention differences (ADHD/ADD)


Sonia Boué

Sonia Boué – Artist, her multiform work explores home and the domestic as metaphors for exile and displacement. Sonia has a significant body of postmemory work. She is also a writer on autism and art with her blog, and a leading consultant for neurodiversity in the arts.

Twitter @SoniaBoue

Topics: Neurophototherapy for the self-recovery of late-diagnosed Autistic women ~ Autistic artists Annette, Callum, & Sonia talk to Dr Chloe Farahar


Dr Monique Botha

Monique is an autistic Research Fellow at the University of Stirling. Monique’s PhD in Psychology from the University of Surrey, focused on the role minority stress plays in the poor mental health experienced by autistic people, and further, how autistic community connectedness may “buffer” those effects. Currently, at Stirling, Monique’s research focuses on several different areas including the ethics of autism research, how ideas around the philosophy of science have shaped the idea of autism, and how certain philosophies of science can provide routes to emancipation for autistic people from unethical, and violent research practice. Similarly, Monique is interested in the intersection of autism, sexuality, and gender, and lastly, the role that language used about autism, plays into stigma and marginalisation.

@DrMBotha on twitter

Topics: Autistic stigma & minority stress


Callum Brazzo

Callum Brazzo – Autistic performance poet, currently working on a direct autistic-led response to Autism Speaks’ 100 Day Kit. Also working on a book called Ripples, a film and a theatre show called Compass, and appearing in TEDx talks: AUTISTICS IN CONVERSATION and Why we should make mountains out of molehills.

Twitter @CallumBrazzo

Topics: Autistic Experience & Tourette’s, The Rural Autistic Community and the 100 Day Community Kit ~ Autistic artists Annette, Callum, & Sonia talk to Dr Chloe Farahar


Carl Cameron

Carl Cameron is autistic and has been working with other autistic adults and children across the autism spectrum for the past 20 years both in residential and educational settings. Carl is a qualified teacher and taught health and social care for a few years. He has writing and delivering autism training sessions for the past 10 years and has worked with several organizations including the National Autistic Society, the NHS and CAMHS. Most of Carl’s work these days is in pre and post-diagnostic support at Matthew’s Hub, a unique autism charity in the city of Hull. Carl is the deputy chair of the Hull Autism Partnership Board.

Topics: Disclosing one’s Autistic identity


Alice Conroy

Neuro-divergent Mother. CEO. Thinker in pictures. Ultra rule-breaker. Founder and CEO, over two decades, of a successful social purpose business working across the Southeast, which specialises in supporting care experienced young people, particularly from a refugee and asylum seeker background. Social entrepreneur, pioneer and business leader. Highly imaginative, creative thinker and innovator. Neurodiversity advocate. Cat lover. Tea drinker. Rule-breaker. Story-teller. Searcher. Proud mum.

Topics: Neurodivergent relationships


Harry Cromar

Harry is a fifteen-year-old Autistic boy. He is currently studying towards his GCSEs. His ambition is to pursue a career in psychology, counselling and advocacy, he would like to follow his mum into the research field to help improve knowledge about autism and mental health. During lockdown Harry moved out of mainstream school to a specialist school, where he is thriving. He loves the outdoors, exercise and activity help him to focus academically. Harry loves gaming, walking in the forest, fishing and as often as we are able visiting the beach. He is highly talented at art and maths, recently he learnt all number sequences up to 31 (i.e. hundred, thousand, billion, trillion…). He is a loving son and brother to his two younger siblings, and they very much look up to him. Harry loves nothing more than a deep and philosophical conversation.

Topics: The roots of the Autistic mind


Lisa Cromar

Lisa Cromar is an autistic Person-Centred Counsellor, working predominantly with autistic clients, she produces autism workshops and is studying towards a PhD at the University of Chester, where she is aiming to improve research for counselling autistic people. She is a published author with a chapter in The Neurodiversity Reader, Pavilion Publishers. She is also an ‘actually autistic’ person and mum to three autistic children.

Facebook Neurodivergence forum for counsellors: https://www.facebook.com/groups/Counsellorsworkingwithneurodivergence/

Topics: Is person-centred counselling effective for Autistics?


Rachel Cullen

Rachel is an Autistic researcher and advocate and proud member of the LGBTQIA community with an undergraduate degree in English literature and language, a PGCert in linguistics and currently studying for a masters in autism studies. Rachel is interested in several aspects of research that directly improves the lives of Autistic people with particular focus on language features of Autistic people across the spectrum.

Topics: Autistic language hypothesis


Emma Dalmayne

Emma is an Autistic Woman of Colour, advocate, and activist, fighting against the harm done to Autistic people in the name of “curing” us. Emma is also the author of two great books explaining Autistic experience in an accessible way for children – “Susie Spins” & “It’s an autism thing: I’ll help you understand”, as well as being the CEO of Autistic Inclusive Meets Community Group AIM, and an admin on the 17,600+ member strong Autism Inclusivity Facebook page.

Topics: Emma Dalmayne, Autistic Woman of Colour, advocate, & activist


Jessica Dark

Jessica regards herself as being multi-generationally neurodivergent, with diagnoses of dyslexia, ADHD, and autism. She recently graduated from her master’s in special educational needs at Roehampton University where she researched ‘Late Diagnosed Autistic Women’s Experiences of Secondary School’ and has now progressed to PhD at Birkbeck University where she is exploring autism diagnosis disclosure in the workplace. In her spare time, she advocates for a better understanding of neurodivergence from a personal, parental, and professional perspective and is particularly interested in raising awareness and promoting supports among adult diagnosed autistics.

Topics: The experience of late diagnosed women


Dr Mary Doherty

Dr Mary Doherty is an Autistic consultant anaesthetist working in Ireland. She is currently researching barriers to healthcare for Autistic adults and the experiences of Autistic adults using mental health services. She was a member of the Royal College of Psychiatrists working group which produced the recent College Report on autism in adults. She provides autism training for medical professionals and advises various medical institutions on autism. Her interests include reframing the tragedy narrative around autism in healthcare, improving the healthcare experience and outcomes for the Autistic community and more recently the presentation of autism in medical doctors. She is founder of the peer support & advocacy group “Autistic Doctors International”.

The Autistic Doctor @autisticdoctor

Topics: Healthcare barriers when Autistic


Mel Duncan

Mel Duncan (she/they) has been working with young people and vulnerable adults for 30 years. They have worked with young people within the criminal justice system, young people in local authority care, managed an advocacy service and leaving care provision and supported Autistic and ADHD students in alternative provision. Mel is one of the co-founders and Directors of Gecko Community, an alternative provision for Autistic and ADHD young people. Mel is a late diagnosed Autistic, ADHD (and suspects PDA) adult, who is completing their Forest School Leader Level 3 and has just completed a BA Honours degree, gaining 1st class Honours.

Find Mel at facebook.com/GeckoCommunity

Topics: Young Autistic people’s mental health, & burnout (Part 2)


Erin Ekins

Erin Ekins is a queer Autistic woman who runs the popular blog Queerly Autistic. She has appeared on the Victoria Derbyshire show, Radio 5 Live and the Channel 4 documentary ‘Are You Autistic?’ and presented at NAS conferences. She lives in Essex with her two mums, her brother and her two dogs, Thor and Odin. Erin Ekins has a book, Queerly Autistic: [an] Ultimate guide for LGBTQIA+ Teens.

Twitter @QueerlyAutistic

Topics: Queerly Autistic: Ultimate guide for LGBTQIA+ Teens


Asher Gilbert

Asher Gilbert (he/him) is a university graduate who studied canine clinical behaviour and he has a particular interest in animal-assisted therapy. As well as studying, Asher volunteers with Noah’s A.R.T, supporting during animal-assisted therapy sessions for people of all backgrounds, including many Autistic and otherwise neurodivergent people. Asher is also a proud transgender man and LGBT+ advocate.

Topics: The importance of animals for Autistic people


Jane Green

Jane Green is an advocate for equality, diversity, human rights and co-production in education, health, employment, social care, police and transport (airport) accessibility for visible/invisible disabilities/conditions. She is a single parent of two adult children and carer to her eldest autistic child. Despite an unusual educational background she trained late and became the lead autism educationalist in various phases in schools, County and leading Charities. She helped design and steer the AET and became strategic Assistant Head Teacher but retired early in 2015 due to chronic ill health and disability. Diagnosed with Ehlers-Danlos Syndromes in 2015 followed by very late autism dx in 2016 after many years of disbelief of being either. She survived. She now advocates on various roundtables, charities and organisations as Trustee for Carer’s charity, Social Care Institute of Excellence, SCIE co-production steering group and involved in DHSC Covid19 guidances and resources. She helps the national EDSUK charity and founded and is Chair of Sussex Ehlers-Danlos and Hypermobility (SEDS) in 2018.

Topics: Ehlers-Danlos Syndromes – Issues with our tissues


Sam Harris

Sam Harris (he/him) is a fully trained and accredited Relationship Development Intervention (RDI®) consultant.

Topics: What therapy works for Autistic people?


Dr Melanie Heyworth

Dr Melanie Heyworth is an Autistic mother to three Autistic children, who she homeschools. Melanie also runs the Australian charity, Reframing Autism, and is currently doing a second PhD in Autistic-led models of care to build parents’ empathy, knowledge and mind-mindedness in parenting Autistic children.

Topics: Explaining Autistic experience to young people


Alyssa Hillary Zisk

Alyssa (they/them) is an Autistic doctoral candidate in interdisciplinary neuroscience at the University of Rhode Island, and also a math teacher. Broadly, they are interested in issues related to disability and communication, neurodiversity and representation, and the overlap of neurodivergence and queerness. Sometimes they use mouth words and sometimes they use typed words.

Topics: Communication – Augmentative and Alternative


Lyric Holmans

Lyric Holmans (they/them) is an Autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. Lyric regularly works with businesses and organizations to help make spaces more accessible to people with invisible differences.

Facebook.com/NeuroDivergentRebel Twitter.com/NeuroRebel Instagram.com/NeuroDivergent Rebel

Topics: Making the Workplace more Neurodivergent Friendly


Debbie Hughes

Debbie Hughes is an Autistic English Literature MA student at Cardiff University and did her undergraduate at Kent. Gaming is one of her special interests, and she is primarily a PC gamer but also has a PS4.

Instagram: deb_lizart

Topics: The importance of gaming for neurodivergent people


Jodie Isitt

After navigating and battling the education and health system successfully for her disabled children and partner, Jodie quickly became passionate about advocating for more than just her family. With success advocating personally for a number of families in the process of EHCP’s, respite, housing needs, Disability Living Allowance and other services, Jodie found that there just wasn’t enough hours in the day and couldn’t help as many people as she desperately wanted. This is a serious worldwide issue and so she began The Nurture Programme®, designed to encourage, nurture, support and hone your very own advocacy skills. Jodie has teamed up with Laura Kerbey – (Positive Autism Support & Training) and Dr Chloe Farahar to deliver a series of programmes, webinars, LIVE Q & A sessions and private consultations to reach as many families as possible and help them advocate for their own children. Jodie also has a Level 2 certificate in Supporting PDA children, teenagers, and young adults.

Topics: “Pathological” Demand Avoidance/the drive for autonomy


Anna Langford

Anna Langford (she/her) is an 18-year-old Autistic who enjoys singing, stereoscopy, has a bearded dragon called Ziggy, loves sharing art and music on her Instagram.

Instagram @jurasicAnna

Topic: The importance of interests for Autistic people & their wellbeing


Dela Maria

Autistic parent, who makes comics, muses about neuroscience and learns new things https://www.facebook.com/HVPPYHANDS/

Topics: Autistic artists Mollie & Marie talk to Harry Thompson


Sarah McCulloch

Sarah McCulloch is the director of the Autistic Empire, an Autistic social organisation built by and for Autistic adults to form community-based on autism as a civic identity and to provide practical tools and services for all Autistic people.

Sarah is also a mental health occupational therapist who works as the deputy manager in a community mental health team in London, UK. Sarah has worked with many Autistic people presenting to mental health services to try and access the support that they need and she sees a lot of misdiagnoses and lack of understanding on the part of professionals and clients, and would like to help Autistic people to advocate for themselves.

Topics: Navigating the mental health system as an Autistic person


JayJay Mudridge

JayJay Mudridge (they/them) is an academic tutor, crossfit athlete, hobbiest mechanic, multiply published poet, and Autistic advocate from Massachusetts USA. JayJay also hosts the platform @ Not Another Autistic Advocate on Facebook. JayJay’s Instagram is @ GiraffeinaJeep

Topics: Autistic ABA trauma ~ Navigating “autism interventions” & therapies


Shona Murphy

Shona Murphy (she/her) is an Autistic parent to two Autistic children. She is a PhD student researching false accusations of Fabricated and Induced illness (FII; similar to what was known as Munchausen’s by proxy). Many parents of disabled children are falsely accused of FII. Parents of Autistic children, including Autistic parents, appear to be particularly vulnerable so it is an important area of research. Previous research has been on Autistic parenthood. Shona also works as a tutor at Edge Hill university, a trainer and a mentor.

@shona_mu

Topics: Autistic parenthood & accusations of Fabricated & Induced Illness


Yenn Purkis

Yenn Purkis (they/them) is an Autistic and non-binary author, public speaker and community leader. They also have a diagnosis of schizophrenia. Yenn works in the autism/neurodiversity, gender diversity and mental health advocacy spaces. They are the author of eight published books on elements of autism and a regular blogger. Yenn has facilitated an autism support group in Canberra since 2011 and has worked full-time in the Australian Public Service since 2007. They have received many awards for their advocacy work over the years, including the 2016 ACT Volunteer of the Year Award and the 2019 ACT Chief Minister’s Inclusion Award. Yenn is a public speaker of almost 20 years’ experience and has presented at a range of events including at TEDx Canberra in 2013.

Topics: Autism and gender


Jeanne Revest

Jeanne Revest has spent many years in education as an educator. Jeanne had an unplanned interlude as a diplomat, and has been involved in social development work (including helping to set up and develop a supported accommodation service for young asylum seekers), and her next project (when Covid allows) is working on coral reef restoration and sustainable livelihoods in Madagascar. Jeanne thrives on variety, life being one long adventure, and doing things her way – if she had to have a motto, it might be “expect the unexpected”, both of life and of herself!

Topics: Neurodivergent relationships


Kim Rhodes

Actor, mother to an Autistic child who meets the pathological demand avoidance profile.

Topics: Beginning the neurodivergence discovery journey with Kim Rhodes ~ Autistic invalidation trauma & stigma with Kim Rhodes


Kieran Rose

Kieran Rose (he/him) is an Autistic Writer and Consultant with a background in Primary education and SEN. He is father to two Autistic children, a boy and a girl; and one Neurodivergent child, a boy. Since his Autism diagnosis is 2003, at the age of 23, Kieran has been dedicated to changing the negative narrative of Autism and highlighting the harm being caused to Autistic people all over the world. Kieran has founded The Autistic Cooperative, an international networking organising for Advocacy organisations worldwide, with over 100 member organisations, including ASAN, ASAN AUNZ, Autistic UK, ASNZ, and 700+ individual members, from over 60 countries. Kieran is also an experienced public speaker and trainer, specialising in Autistic Masking and Burnout and he is a consultant on several research papers exploring them.

Find Kieran as The Autistic Advocate on social media

Topics: Autistic masking REALLY ~ Autistic masking and stigma ~ Situational mutism ~ Discovering an Autistic identity following becoming a parent


Mollie Sherwin

Mollie Sherwin is a PDAer (meets the “Pathological” Demand Avoidance profile) and speaker on personal experience of PDA. She speaks about life as an Autistic teenager experiencing PDA following the release of a book about her life, and how this affected friendships and teenage life. Mollie Sherwin – of Crocheted Baby Yoda fame, and illustrator – https://www.facebook.com/MBsWorkshopss/

Topics: The importance of gaming for neurodivergent people ~ Autistic artists Mollie & Marie talk to Harry Thompson


Melissa Simmonds

Melissa (she/her) is a campaigner on autism and neurodiversity and intersections with race and faith. The founder of MisTÂûght and the creator of Black History Month for Dummies & White Teachers. She’s in her final year of a MA in Autism Studies at Sheffield Hallam University; where she is doing a dissertation on looking at children as ‘Agents of Change’ in birthing a more autism inclusive society.

Twitter: @ Mis_TAught

Topics: Executive functioning differences


Jodie Smitten

Jodie (she/her) is a children’s well-being practitioner specialising in autism. Or children autism specialist for short. Jodie works collaboratively with children, their families and their schools to support a process of understanding, acceptance and advocacy.

Jodie also offers training on the Autistic experience for a variety of organisations including schools, and delivers regular talks/webinars, which anyone is welcome to access. Jodie is also the parent of Autistic children and has co-authored a book with her Autistic daughter. She is currently studying for an MA in autism at Sheffield Hallam University.

Find Jodie on Facebook at BehaviourSupportWiltshire On Twitter as JodieSmitten and on her website jodiesmitten.co.UK

Topics: Young Autistic people’s mental health, & burnout ~ Young Autistic people’s mental health, & burnout (Part 2) ~ Autistic parenthood & accusations of Fabricated & Induced Illness


Daryl Sookun

Daryl (he/him) is a twenty-two-year-old Autistic writer who has recently finished studying at The University of Kent. The past six years have been the most challenging and traumatic years of his life. Daryl has been a victim of bullying, harassment, and discrimination, and has had to endure failed relationships. Yet after having received an autism diagnosis during his studies at Kent, Daryl now has an answer to all the traumatic experiences that he has endured. Now, Daryl wishes to rebuild his damaged life and move forward from his traumatic past and live as a writer to narrate the Autistic experience and be an activist for the Autistic community.

Poem: The Proud Retard Book: The Nowhere Man

Topics: Rebuilding my life after receiving my diagnosis


Dr Catriona Stewart OBE

Cationar Stewart (she/her) is Founder and Organisational Development Lead at SWAN: Scottish Women’s Autism Network. She is a trainer and conference plenary speaker. She’s acted as an advisor at national level, including to the Independent Review of the Mental Health Act, Scotland, completed Dec 2019, the current Scottish Government #DifferentMinds Campaign, and since the start of the COVID crisis, the Human Rights-focused Independent Advisory Group to the Scottish Police Authority. SWAN is currently delivering an Employment Project, coaching and mentoring autistic women in their work contexts, and giving training to employers and colleagues.

Topics: Autistic employment issues, and peer support


Sam Story

Sam Story is a young person who explains his perspective on how to tell a young person they are Autistic.

Topics: Explaining Autistic experience to young people


Leo Tyme

Autistic trans male who is a public speaker and advocate for human rights. He loves art, nature, music, podcasts, Star Wars, dogs, and Supernatural. Leo works in a warehouse position with trading cards.

Topics: Imposter Syndrome


Nicola Wakeling

Mother of Autistic children, mindfulness mentor, teacher by profession. Nicola Wakeling on Facebook: https://www.facebook.com/aspacefordif…

Topics: Autistic experience: Dr Chloe Farahar answers follower Nicola Wakeling’s questions


Nick Walker

Nick Walker (she/her) is a queer, transgender, flamingly Autistic author and educator best known for her foundational work on the neurodiversity paradigm and Neuroqueer Theory. She is a professor of psychology at California Institute of Integral Studies, a Managing Editor at Autonomous Press, and co-creator of the Weird Luck webcomic.

Twitter: https://twitter.com/WalkerSensei
Facebook: https://www.facebook.com/nickwalkersensei

Website: https://neuroqueer.com/
Webcomic: https://weirdluck.net/

Topics: What is neurodiversity & why’s it important?


A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person) by Dr Chloe Farahar

Dr Chloe Farahar was invited to write a guest article for University College London, Unit for Stigma Research blog, titled: A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person).

“Question: Is identifying with social groups beneficial to people’s health and wellbeing? Whilst marking undergrad essays on this question back in 2020 – my mind began to wander, as it is prone to do, to Autistic things. Although my PhD was in the field of social psychology – where I attempted to reduce mental health stigma with the neurodiversity narrative – I had become so engrossed in my little sliver of the field I forgot about other social psychological theories and approaches. I researched the references my students were citing and made a short Twitter thread of my thoughts regarding the psychologically important difference between being a “person with autism” and an Autistic person. The difference between belonging to a stigmatised group, and the social cure properties of strongly identifying with an Autistic identity…” continue reading HERE.

View the video that accompanies the invited article for University College London HERE or below.

Ableism in Academia – Dr. Chloe Farahar & Annette Foster


Dr. Chloe Farahar and Annette Foster joined Meghan Ashburn of Not an Autism Mom to talk about their chapter in the newly released: Lived Experiences of Ableism in Academia: Strategies for Inclusion in Higher Education

They shared their own experiences as Autistic academics as discussed in their chapter #AutisticsInAcademia about what accommodations they found helpful, and how universities can be more accessible.

Catch up with the session here:

The Proud Retard – Written by Daryl Sookun

TRIGGER WARNINGS: bullying; victimisation; use of the word “retard”; strong language/swear words


Let us go to the truth that meets so much denial,
And let us see it clearer.
That if music be the food of love,
Then let awkwardness be its killer.
Since it only takes an awkward stutter,
To diminish what could be a happily ever after.

Through the marginalisation of misaligned misfits,
There are labelled loners,
Who carry the weight of their conditions as crucifixes,
In a secluded society for normal people.
Weirdness is the nail that sticks out of a wooden board.
Every social interaction,
Feels like persecution.
Being livestock for laughter,
And rebuffed by every single lover.
To be greeted with slaps and punches in the face,
Finished with the reminder of being a parent’s disgrace.
To receive a kick up the arse for every tear that falls from the eye,
And to be told that for people like them, happiness is a lie.

There is a dark side to what we call the ‘universal language’,
A side where a smile becomes a dirty look.
Greeted by rejection in every corner of the earth,
With isolation, suffering, pain and longing.
Not alien to the Aborigines,
Or strange to the Japanese.
People of the world would laugh and stare and wonder ‘how odd’,
For this thing of man to have ever been a creation of god.
That is the language that crosses boarders,
For the people with mental disorders.
There are a million linguistic ways to say, ‘I love you’.
And thrice a million to say, ‘fuck you’,
And goodbye.
For you should not be seen by the eye.
Since your existence is a rare mistake of nature,
And therefore, you must die!

Yet to know the truth, one’s denial must shift,
Because this ‘disorder’ is truly a gift.
A gift possessed by those whose sanity is drowned by madness,
And exist in this neurotypical world of sadness.

They are different,
But still like all of us,
Tramps who are born to run,
Through the daily ditches of normality.
But their gifts will one day bring them to tranquillity.
Even if they can’t run,
They are still born and exist day by day,
And can still say ‘FUCK YOU’ in their own way:

They are part of the world and deserve to live in it.
Because it is they who contribute to the Earth’s orbit.
And the writing of history,
And the composing of symphonies,
And discoveries,
That enlighten the Swedish academy.

Here’s to the Nowhere man,
Who reached out to the Nowhere people.
And imagined a world without a heaven,
Because heaven is for the normal.
If all the neurotypicals went to heaven,
The world would be a better place.
A world of peace can only ever be imagined,
In the minds of the people who are called ‘abnormal’.

People of the neurotypical world,
I’m also an ‘abnormal’ man.
So, this is my testimony.
They don’t need you, but you need them,
More than you will probably ever know.
So, let go,
Of your fuelled hatred.
For the people who you don’t understand.
Because for every ignorant person who will be on guard,
There will always be a proud retard.


Daryl Sookun Bio:

Daryl (he/him) is a twenty-two-year-old Autistic writer who has recently finished studying at The University of Kent. The past six years have been the most challenging and traumatic years of his life. Daryl has been a victim of bullying, harassment and discrimination, and has had to endure failed relationships. Yet after having received an autism diagnosis during his studies at Kent, Daryl now has an answer to all the traumatic experiences that he has endured. Now, Daryl wishes to rebuild his damaged life and move forward from his traumatic past and live as a writer to narrate the Autistic experience and be an activist for the Autistic community.


Rebuilding my life after receiving my diagnosis: Autistic writer Daryl educates Chloe and Annette 03.07.2021

GLOSSARY OF AUTISTIC TERMS

Ableism: A “type of discrimination in which able-bodied individuals are viewed as normal and superior to those with a disability, resulting in prejudice toward the latter.”

Autistic experience/to be Autistic: “[A] neurodevelopmental difference, where Autistic brains work differently to non-autistic people. ​There are as many different brains and ways of experiencing the world as there are different bodies. ​ There is a variety of Autistic people, just as there is a variety of non-autistic people, but all Autistic people share some similarities. ​ These similarities include: ​

  • differences in experience of the sensory world, ​
  • differences in communication, ​
  • differences in thinking, socialising and moving​

Some Autistic people need support with day-to-day living, and within this perspective there is no one way to be Autistic. (Autistic Self Advocacy Network, 2020)

Autistic culture: “Autistic culture largely works from a shared understanding of the neurodiversity paradigm, where Autistic experience is a natural variation within the human species, enacted upon by social power relations and ideological notions of “normal” (Farahar and Bishopp-Ford, 2020; Walker, 2014). Where Autistic experience is in need of acceptance and societal accommodation and support, not intervention or “cure”… This shared, depathologised meaning is in turn transmitted to other Autistics via “the culture we produce [such as our writing, art, and music]” (Straus, 2013, p. 466).” – Farahar (Handbook of Critical Autism Studies, forthcoming 2022)

Culture: The ideas, customs, and social behaviour of a particular people or society (Oxford University Press, 2020).

Culture of autism: The pathological and paradigmatic narrative that constructs “autism” as a medical neurodevelopmental “disorder”, embedded within a “culture of autism”.  Within this culture “people with autism” are portrayed negatively as people with deficits, and this is transmitted in similar ways to other cultures, via writings, symbols (e.g., the puzzle piece), art, language use and so on.

Discovery versus diagnosis: Discovery is preferable as diagnosis implies medical disorder or disease, which is unsubstantiated in the literature, as well as going against the narrative of the neurodiversity narrative, paradigm, and movement (Walker, 2014) of difference not deficient.

Neurodiversity: The diversity of brain and body-minds.  Neurodiversity, a property of groups, contains neurotypical people who learn and perform neuro-normativity.  It also contains neurodivergent people who queer their body-minds in distortion of neuro-normativity.

shareable meme, gold background, with lots of circles around a central circle that says neurodiversity.  The circles contain: Neurotypical; Autistic; Attention Differences (ADHD/ADD); Dyslexic; Dyspraxic; Tourette’s; Obsessive Compulsions; Anxiety; Depression; Trauma Response/s; Voice-hearing.  Black writing underneath says: Neurodiversity, the property of groups, contains neurotypical people who learn & perform neuronormativity.  It also contains neurodivergent people who queer their body-minds in distortion of neuronormativity.

Neurodivergent(ence): Individual body-minds that function in ways that diverge from ideals of neurotypicality (Walker, 2014).

Neurominority: Group who share the same divergence (e.g., Autistic; dyslexic; voice-hearer; etc.).

Neuromajority: Those whose behaviours and ways of being are deemed socially acceptable, and who are able to perform neuronormativity.  Comprises those who are considered neurotypical.

Neuro-normativity: The body-minds/behaviours/neurologies/brains that are valued as normal in society – deemed socially acceptable.

To neuro-queer/be neuroqueer: To distort the performance of neuronormativity.

Neuro-typical(ilty): The condition from which neuro-divergent people diverge from neuro-normativity. 

Shareable meme, Navy blue background, white writing, gold neurodiversity symbol: white writing says: Neurodiversity = the diversity of brains, and body-minds. A property of groups.  Neuro-divergent(ence) = individual body-minds that function in ways that diverge from ideals of neuro-typicality.  Neuro-typical(ilty) = the condition from which neuro-divergent people diverge from neuro-normativity.  Neuro-minority = group who share the same divergence (e.g., Autistic; dyslexic; voice-hearer; etc.).  To neuro-queer or be neuro-queer = to distort the performance of neuro-normativity. Definitions of neurodiversity - Aucademy in discussion

Pathology/pathologising: Regard or treat as psychologically abnormal.  To represent (something) as a disease. A departure or deviation from a normal condition.

Stigma: A process of negative labelling; stereotyping; prejudicial attitudes; and discriminatory behaviours about and toward groups of people with socially deemed undesirable characteristics.


Autistic Self Advocacy Network. (2020). About Autism. Retrieved from ASAN: Autistic Self Advocacy Network: https://autisticadvocacy.org/about-asan/about-autism/

Farahar, C. (2022). Autistic identity, culture, community, and space for wellbeing. In S. Ryan, & D. Milton (Eds.), Routledge Handbook of Critical Autism Studies. Routledge.

Farahar, C., & Foster, A. (2021). #AutisticsInAcademia. In N. Brown (Ed.), Lived experiences of ableism in academia: Strategies for inclusion in higher education. Bristol, UK: Policy Press.

Oxford University Press. (2020). Culture. Retrieved July 2020, from Lexico: https://www.lexico.com/definition/culture

Straus, J. N. (2013). Autism as culture. The Disability Studies Reader4, 460-484.

Walker, N. (2014, September 27). Neurodiversity: Some Basic Terms & Definitions. Retrieved October 9, 2016, from Nick Walker’s Notes on Neurodiversity, Autism, and Cognitive Liberty: http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

The Autistic Mental Health and Wellbeing Conference 1st – 2nd May 2021

[Image description: Dark blue text box with white and orange text. Text reads: ‘Autistic Mental Health and Wellbeing 1-2 May 2021 An Autistic-led online conference’ Illustration of a monarch butterfly. Half of the butterfly is shown in black and white, half in colour. A gold infinity sign lies across the butterfly’s thorax. On a dark blue text box at the top Reframing Autism and Aucademy’s logos appear.]

Aucademy are very pleased to be co-hosting an Autistic mental health event in 2021 with Reframing Autism, and one of our valued contributors David Gray-Hammond of Emergent Divergence. Donation tickets to be released early 2021. Pop this in your calendars!

“We are so excited to bring you this event in May 2021, a collaboration with Autistic-led educational organisation Aucademy. Held online over two days, the Autistic Mental Health and Wellbeing Conference will offer a wealth of expertise and lived experience from a diverse group of advocates.

Event description

Reframing Autism and Aucademy are delighted to co-host a one-off, online conference focusing on the mental health and wellbeing of Autistic people.

The following Autistic advocates will present their experience and expertise on the topics of Autistic mental illness, masking, Autistic burnout, wellbeing, and resilience:

  • Tim Chan
  • Bobbi Elman (Bobbi Elman: NeuroDivergent Autism Support)
  • Dr Chloe Farahar (Aucademy)
  • David Gray-Hammond (Emergent Divergence)
  • Christa Holmans (Neurodivergent Rebel)
  • Yenn Purkis (Yenn Purkis Neurodiversity page)
  • Kieran Rose (The Autistic Advocate)
  • Harry Thompson (Harry Thompson – PDA Extraordinaire)

There will also be a live panel discussion, held on Saturday 1 May at 20:00 GMT, exploring the factors contributing to Autistic trauma. The panel, chaired by Harry Thompson, will include:

  • Chris Bonnello (Autistic Not Weird)
  • Emma Dalmayne (Autistic Inclusive Meets, Autism Inclusivity)
  • JayJay Mudridge (Not Another Autistic Advocate)
  • Tigger Pritchard (The Autistic Coffee Shop with Tigger Pritchard)

Many of the presentations will put forward protective strategies for Autistic wellbeing and resilience, and all the presenters will aim to end their presentations on a hopeful note.

The overall aim of the event is to offer insights from lived experience into a range of co-occurring mental health conditions and wellbeing issues affecting Autistic people and to reduce stigma around mental illness.

The event will be delivered via a closed Facebook group throughout the weekend of 1–2 May 2021.

We are hoping to raise enough in ticket sales to compensate our Autistic presenters sufficiently. We are offering set-price tickets and donation tickets, so as to make the event accessible and affordable for all attendees.

Trigger warnings: Mental illness, trauma

About Aucademy

Founded by Dr Chloe Farahar, Aucademy offers Autistic academics, researchers, teachers, speakers, trainers, and advocates education on Autistic experience for Autistic and non-autistic learners, because the best way to learn about Autism is from Autistic educators.

About the presenters

Chris Bonnello is an Autistic special needs tutor, formerly a primary school teacher. Since 2015, he has become an international speaker on Autism issues. He shares his insights on his blog autisticnotweird.com, which has had more than 2.5 million hits, and with a Facebook community of over 135,000 followers. He is also the author of the Underdogs novels.

Tim Chan is a 25-year-old Chinese Australian. Diagnosed with Autism at 3 years old, Tim has been non-speaking after 14 months of age. He picked up Partner Assisted Communication at age 9 and has used this as his preferred method to “talk”, connect with people and engage with the world. Tim gave a TEDx talk at 18, presumably the first by a non-speaking Autistic person, and published his autobiography Back from the Brink in 2019. Facing discrimination and exclusion at high school, Tim has become passionate about social justice and works with advocacy organisations including The I CAN Network, Youth Disability Advocacy Services and Children and Young Adults with Disability and is a director of Reframing Autism. Defying early gloomy prognosis for his future, Tim is currently completing a Bachelor of Arts majoring in sociology.

Emma Dalmayne is an Autistic mother to Autistic children, and the founder and CEO of not-for-profit organisation Autistic Inclusive Meets. She campaigns strongly for Autistic rights and fights to stop Autistic mistreatment, having worked with the police, the BBC and other prominent media. Emma has written two books about Autism, It’s An Autism Thing… I’ll Help You Understand It and Susie Spins.

Bobbi Elman was born in the US and moved to the UK over 27 years ago now. She is happily married and a parent to two amazing young people. Bobbi has worked for more than 8 years in a primary school as an Autism-specific one-to-one TA and completed a postgrad degree in Autism from the University of Birmingham. Now working for herself, Bobbi trains staff in primary schools, organisations, charities, etc., as well as online workshops and presentations. Bobbi only recently discovered her Autistic identity and has happily embraced it.

Dr Chloe Farahar: late diagnosed, perpetually, enduringly, eternally, weird, odd, standoffish, but also beautifully, irredeemably Autistic. Dr Farahar is an Autistic academic whose research interests revolve around her Autistic specialisations (not “special interests”). Her specialisations include: reducing mental health stigma with a neurodiversity script Stigmaphrenia© (Farahar, 2012); supporting Autistic people with her co-founded So, You’re Autistic? post-diagnostic support programme; reimagining the spectrum as a three-dimensional Autistic space; and educating both Autistic and non-autistic learners about Autistic experience in her training courses and on her educative platform, Aucademy.

David Gray-Hammond is an Autistic addiction and mental health advocate. He is in recovery from addiction and psychosis. David is Chief Operating Officer of NeuroClastic and runs the Facebook page and blog Emergent Divergence. He has published numerous articles on the topic of addiction, mental health, and asexuality amongst Autistics and has also spoken on the topics of addiction and mental health. David has also been involved in the commissioning of substance addiction services in his home city, and has consulted in city Council meetings on addiction treatment policy to represent the treatment rights of Autistic addicts.

Christa Holmans is an Autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. Holmans is also known as the pioneer of the #askingautistics hashtag, which connects neurodivergent people who would not otherwise have a reason to engage with each other, and fosters collective understanding of Autism. Christa currently lives in an RV with their best friend and four dogs, pursuing new interests wherever they can be found.

JayJay Mudridge is an Autistic advocate, hobbyist, crossfit athlete, multiply published poet, and academic tutor existing in and around Massachusetts, USA. They run the page Not Another Autistic Advocate on Facebook where they attempt to dispel cultural myths about Autism and Autists.

Tigger Pritchard is an Autistic advocate, trainer and consultant. Tigger has devoted the past thirty years to working with neurodivergent individuals in many capacities. He consults to individuals, families and organisations, sharing his extensive skills, knowledge and lived experience. Tigger is the longest-serving Makaton (keyword sign) tutor in the United Kingdom. He’s also involved with the National Autistic Society in the county of Cornwall. And he runs the Facebook page The Autistic Coffee Shop with Tigger Pritchard, as well as an Instagram account and YouTube channel.

Yenn Purkis is an Autistic and non-binary advocate, presenter and author and co-author of 10 books. Yenn has been a trailblazer in Autistic self-advocacy, with their work in this area beginning in 2005. They are prolific, producing memes, blogs, videos, and undertaking many speaking engagements, including a TEDx Canberra talk in 2013. Yenn has won several prestigious community leadership awards over the years, including the winner of an Achievement in Inclusion award at the 2019 ACT Chief Minister’s Inclusion Awards and ACT Volunteer of the Year in 2016.

Kieran Rose is a published author and international public speaker, whose essays at theautisticadvocate.com have been read by over 1.5 million people.

With a background in SEND Education and service delivery for children and adults, Kieran delivers his own specialist Autism and Neurodiversity training to families and professionals; and provides private consultancy for charities and organisations across the world.

He is founder of The Autistic Cooperative, an international network and lobbying group for Autistic professionals and advocates; Managing Director of the social enterprise Infinite Autism, which supports Autistic people and families in the North East of England; he is advisory board member of the US-based international Occupational Therapy and Speech and Language Education organisation Therapist Neurodiversity Collective; and is Neurodivergence Educator for the US-based Occupational Therapy charity the Star Institute for Sensory Processing.

Alongside consulting on various research papers, Kieran is co-producing his own research into different areas including Autistic masking, victimisation; and monotropism and Autistic identity with his research partner, Developmental Psychologist Dr Amy Pearson; he has a co-produced published paper on Autistic masking with Dr Pearson; and another one on masking in the publication process with Dr Louise Chapman. Kieran is also a published research partner with the Institute of Leadership and Management on the experiences of Neurodivergent people in employment. He has lectured at universities across the UK and is also a PHD supervisor for Durham University.

Kieran was diagnosed as Autistic in 2003 and is parent to three children, two of whom are diagnosed Autistic.

Harry Thompson was born in Edgeware and grew up in Barnet (North London). He is currently based in London, UK and is an avid reader and researcher. He launched his YouTube channel in March of 2017 which has since amassed a strong following.

Harry began to write the first draft of his book in 2015. After connecting with many Autistic and PDA families, he pivoted his direction and completed his book in about 6 weeks, a memoir entitled The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum.

Harry has been elected to a Fellowship of the Royal Society of Arts (FRSA) in recognition of his work in the field of PDA, and also in recognition of the publication of his book, The PDA Paradox, which has been deemed an outstanding contribution to our knowledge about PDA.

Tigger Tuesdays – video shorts

Tigger Pritchard, who produces video shorts called “Coffee with Tigger”, is kindly, lushly, gorgeously sharing his video shorts with Aucademy for Tigger Tuesdays.

Tigger’s video shorts look at the amazing Autistic world, with guests, reviews, tips, ideas and advice. From The Autism Coffee Shop with Tigger Pritchard, Facebook page, Podcasts and more. Hosted by Tigger, a passionate Autistic advocate, consultant and trainer.

So grab a cup of coffee and head to Tigger Tuesday videos for snippets of insight into being Autistic, and discovering this later in life.