Autism Speaks are widely detested within the Autistic community. Since their inception, the horrendous “I am autism” commercial, and their ongoing attempts to eradicate autism and Autistic people; they have demonstrated themselves as an organisation that is not an ally to Autistic people. Spectrum 10k has revieved a similar reception from the Autistic community. It seems requesting the DNA of 10,000 Autistic people for “definitely not eugenics” reasons (but they can’t guarantee others wont use it for eugenics) has quite predictably upset far more than 10,000 Autistic people.
In a new and interesting development, activist and blogger Fierce Autie has made a connection that we all suspected might exist, but never had any tangible proof of. Now, thanks to the work of this activist, we may well have our connection. Link to their post below:
For the purposes of Spectrum 10k, what you need to know is that The Wellcome Trust is the primary sponsor of this £3 million research project. Aside from comments on how that £3 million could have been better spent, this trust is deeply connected to S10k.
What is interesting as you will see within Fierce Autie’s blog post is that The Wellcome Trust received part of a $1.6 million grant from Autism Speaks to fund research into diagnosis and screening methods in moderate to low income countries. While we can not definitively say one way or another that money from Autism Speaks ended up in the Spectrum 10k banks account, what we can say is that The Wellcome Trust has direct links to Autism Speaks.
What is AGRE?
Again, in there own words:
“The Autism Genetic Resource Exchange (AGRE) is a gene bank housing data and biomaterials from over 2000 AGRE families, most of whom have two or more children on the autism spectrum. Although for over a decade AGRE has collected most of these materials in the family home, we have now moved into the role of a Data Coordinating Center (DCC), receiving data and biomaterials primarily from outside researchers. As a DCC, AGRE will continue to expand its resource by collaborating with researcher institutions who are working directly with families who have children on the autism spectrum. We will further in our mission to accelerate the pace of autism research by enlarging our resource and continuing to make it available to autism researchers around the world”
The Health Research Authority (HRA) states the following about S10k:
“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks. As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”
AGRE represents an undeniable link to Autism Speaks and is a strong indicator that this project may share goals and views with them (in my opinon).
What does this mean?
These points come together to show us that once again we have been lied to. Fierce Autie’s blog post shows tweets from Spectrum 10k’s twitter account denying any connection to Autism Speaks, while they full well know they are connected. Yet again, the significance of our joint statement is brought to light. What’s more, the fact that we have been ultimately ignored by the HRA shows us that they are closer to Autism Speaks than they are to the Autistic community.
If you needed anymore reasons not to give them your DNA, here it is.
To put this in context, you can visit the Open University web page where these resources are housed here.
Many people are talking about the BBC’s latest documentary on autism and finding it refreshingly validating. However, the resources that have been put up online by co-producers at the Open University are exceedingly outdated and missing key advances in knowledge of Autistic experience. It is clear that while the documentary itself may be okay, those behind it have learnt very little about the reality of Autistic experience.
The first thing you need to know is that the interactive documents take an obvious deficit based approach. This is evident in the theories they promote and the language used throughout. You can tell a lot about organisations from the way they talk about marginalised communities, and the OU are marking themselves as unsafe and ignorant. Using neurodiversity-affirming language and up-to-date theory is the minimum expectation one can place on an institution that provides degree level training to people who will work with Autistic individuals.
Being more focused, the most obvious issue that stands out to me is the references to Baron-Cohen’s now debunked theory of mind claims. They reference the claim that we struggle to understand the minds of others and understand their feelings as different to ours. This is largely baseless and incredibly harmful. Quoting Baron-Cohen on matters of Autistic experience is like quoting Freud in modern psychology; he is a relic of the past and has not ages well.
I would next like to discuss their claims that Autistic people struggle to communicate and follow social conventions. Even newcomers in the field of Autistic experience become aware of The Double Empathy problem exceptionally quickly. Rather than positioning us as having a deficit in social reciprocity, this theory demonstrates that the issue is one of experience. Autistic people have different cultural experiences to that of non-Autistic people, resulting in difficulties with communication on both sides. Unfortunately, due to the power imbalance in our society Autistic people are labelled as having a deficit and required to conform to non-Autistic communication.
It is not okay that the Open University are upholding this power imbalance.
My final note is that they espouse the view that cognitive behavioural therapy is the gold standard for the treatment of anxiety. Autistic people have been reporting for some time now that due to the double empathy problem and a lack of understanding of Autistic culture and experiences, CBT is more of an exercise in gaslighting than a beneficial treatment for what is a very reasonable response to systemic oppression.
These issues highlight to me the short-sightedness of so-called professionals and academics. You can make all of the wonderful documentaries that you like. If the resources you are sharing are harmful, then your allyship is performative at best.
Society has a long way to go in order to treat Autistic people equitably, but a good first step that will benefit everyone is to consult Autistic voices from diverse backgrounds on Autistic matters. We are not the ones with a deficit. Society is.
Edit to add disclaimer: Despite Simon Baron-Cohen telling us that there will be a police presence, A member of the protest team has since spoken to Cambridge Police and confirmed that no police presence is booked for the protest, although they may now send one or two officers to make sure everything is alright. In our opinion, Baron-Cohen told this lie in a direct attempt to try and stop the protest from happening. Please do still read the article as we believe this lie makes the content even more important.
This article was co-written by members of the Boycott Spectrum 10k team; David Gray-Hammond, Tanya Adkin and Bobbi Elman
Trigger warning: This article contains discussion of violence by law enforcement professionals, and discussion of systemic trauma caused by the criminal justice system.
Anyone who has followed the Boycott Spectrum 10k campaign will be aware that we are holding a peaceful protest outside the Autism Research Centre on the 29th October 2021, in Cambridge. This is the workplace of Simon Baron-Cohen, and the main research centre where the Spectrum 10k study will be housed. For more information on why we are protesting, please see our collective joint statement here, and another article discussing the study here.
Since it has now been confirmed by Simon Baron-Cohen that they have opted for a police presence on the day of the protest, we felt it necessary to have a discussion about why this is problematic, and the recent stories of police brutality against Autistic people. This is not to say that people will be at risk at the protest, this is a peaceful protest, and the whole event will be livestreamed, but police brutality is a very real issue that we feel someone like Simon Baron-Cohen should be, and probably is, aware of.
In fact, he said it himself.
We all know the stories from America. Police brutality is well documented in the States.
Unfortunately, due to the extreme nature of the violence and discrimination against minority groups in the US, and the voyeuristic nature of the UK media, what is happening on our own soil often goes unreported. One might understand this, when you consider that police in the US are literally killing innocent minorities. However, police brutality still exists in the UK, and Autistic and otherwise disabled people have often been on the receiving end.
“At least we’re not being shot”
This is a response often heard from people speaking from a place of privilege. It is also a response from those of us who have been so gaslit and bullied that we are willing to accept a certain level of mistreatment as normal, and be grateful for it. For example, Autistic children in mainstream schools are always “coping”. It’s considered acceptable to be treading water, despite the fact that one day we will run out of stamina and begin to drown.
In fact, our children are often victims of police brutality, in the very schools that claim to keep them safe.
Said police officer threatened to kick the boy, and dragged him along the ground, before turning to another child and saying “you’re next”. This didn’t happen in the US, this happened in Merseyside, UK. And the courts? After convicting the police officer of assault, merely fined him.
“The IOPC said PC Kemp attempted to handcuff the teenager, but when this was unsuccessful, he used CS spray less than a metre from her face. “Within seconds he started using his baton and then struck her several times,” it said.”
The stories above are just three very recent examples of police brutality against DISABLED CHILDREN. These are the ones that are privleged enough to have formal recognition of their neurodivergence. These are the ones who were lucky enough not to be institutionalised. What about the people labelled as “naughty”, “aggressive”, “feral”, “defiant”. What about those mislabelled mentally ill? If we are left unrecognised (read more here) and with these labels for long enough, we can develop mental health conditions. It’s inevitable, you can read more about this here.
What about those at the intersection of multiple marginalisation?
It’s well known that Autistic people are more likely to be gender non-conforming, there is a significant overlap between the Autistic community and the LGBTQIA+ community. It’s also known that very few of us fit the white, male, cis, heterosexual, middle class stereotype that the DSM-V criteria are based on, and what has been perceived as accepted for decades. In fact there are three of us writing this article right now and we can’t think of one Autistic person between us that fits this stereotype. Contrary to popular belief we have very wide reach and pretty busy Autistic social lives.
There are multiply disabled Autistics, non-speaking Autistics, Autistic people practicing a wide range of religions, or no religion at all. Like every human, we are everywhere, just like everyone else, we just have a different neurology to those with the dominant neurotype.
When we consider the different intersections in the Autistic community, there is one very significant intersection that we need to talk about with regard to police brutality. We need to consider how this impacts Autistic people of colour. It is widely publicised, the insidious prejudice ingrained into the world institutions and society itself.
Existing on this intersection places Autistic people of colour firmly near the top of the list when it comes to risk of police brutality.
“The police need to know that a Black person stopped by them for whatever reason, already has it in their head that they may not make it out from this stop alive. So nervousness, lack of eye contact, not reading body language and facial expression and all the other signs of what could be a condition like autism, could simply be a neurotypical person’s terror that they may never see their family again. Now imagine that same scenario in the head of someone who already has communication difficulties? Devastating.”
Of course, police brutality doesn’t always look like physical violence. Sometimes it is the systemic violence that unfairly incarcerates Black Autistic individuals. This was made obvious by the case of Osime Brown, A Black Autistic teenager, unfairly convicted and jailed, for a crime he didn’t commit, under the discriminatory joint enterprise law. Not only was he imprisoned, he was scheduled for deportation. It took a great deal of campaigning and protesting to have Osime freed and his deportation cancelled.
“Black people statistically struggle to gain access to assessments let alone diagnosis. Instead of getting the academic and social support he needed then, Osime, like many of us, was wrongly seen by his teachers as troublesome, stubborn and stand offish. Covering his ears due to sensory overwhelm was seen as rudeness. Meltdowns due to sheer frustration at not being able to communicate his needs was seen as bad behaviour…
…As a society we need to unlearn our biases, and develop better ways to support Black and neurodivergent people.”
Finally, let us consider the research surrounding Autistic people and their experiences with the police.
Research tells us that natural Autistic expressions of self increase the likelihood of a person encountering the criminal justice system at some point in their life (Tint et al; 2017).
Research also tells us that Simon Baron-Cohen has been espousing harmful views regarding Autistic people and criminality since at least the 1980’s, claiming that Autism is a risk factor for violent crime and terrorism (Baron-Cohen, S; 1988). perhaps now it is easy to see why he feels it necessary to intimidate us with systemic aggression. This is a man who has believed that our existence is dangerous for decades.
Simon Baron-Cohen knows exactly what he is doing by inviting the police to a peaceful protest, led by Autistic people (whom he professes to serve the interests of?) trying to defend their right to exist. He is hellbent on perpetuating the myth that we are violent, dysfunctional criminals. This is dehumanising. Autistic people are most likely to be victims (for a wider discussion of this, see Aucademy’s video here), not perpetrators.
Not only is this evidence of Baron-Cohens disdain for Autistic people, but also a prime example of his privilege. He’s so far removed from the daily lived experience of his “research subjects” that he genuinely thinks this is an appropriate response, does he read any research beyond his own self-serving and incredibly biased theories, that Autistic people disprove by merely existing?
This is all-the-more reason to attend this protest, we need to show in voice and number that we will not stand for the discrimination and prejudice that so called “autism researchers” continue to pour upon us, infecting every aspect of our daily lives.
Simon, just because you keep repeating something doesn’t make it true.
Boycott Spectrum 10k Team
For more information on the protest, please see the event listing on Facebook here.
Tanya Adkin (she/her)
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives
I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way
My work includes specialist consultation and direct work with Autistic CYP and their families that others describe as “complex” and “difficult to engage”, ranging from those experiencing psychosis, addiction to high risk Children Vulnerable to Exploitation, County lines and Sexual exploitation.
I work as a specialist alongside social workers ranging from assessing capacity, neurodivergent parenting, disabled children and child protection.
Bobbi Elman (she/her)
Bobbi is an Autistic mother of two Neurodivergent young adults. Bobbi and her children all have hypermobile EDS with many of the conditions that accompany it, like PoTS. High anxiety (exposure anxiety). Bobbi is a University of Birmingham graduate with a degree in SEN children Autism and has worked specifically with Autistic children/young people for over 19 years and believe in low arousal, child/person-centred approach. Bobbi has over eight years of experience working as a high-level specialised Autism one-to-one TA and experience working on a LA Autism Advisory team, which included key work.
Bobbi does not support ABA/PBS. (Applied Behaviour Analysis and Positive Behaviour Support).Bobbi continues to deliver training to staff and school, and will happily deliver training toanyone who works with or has contact with an Autistic child or adult on the Autistic experience. Bobbi is available for consultancy, advocacy, and training.
Aucademy (2021) Autistic, gender, & sexuality diversity – growing list of resources. aucademy.co.uk
Aucademy (2021) Autistics respond to media reporting of violence & victimisation by neurodivergent people Aug 2021. Aucademy, youtube.com
Baron-Cohen, S. (1988). An assessment of violence in a young man with Asperger’s Syndrome. Journal of Child Psychology and Psychiatry and Allied Disciplines, 29(3), 351–360.
Boycott Spectrum 10k Team (2021) Collective joint statement from Autistic people on Spectrum 10k. Emergent Divergence, emergentdivergence.com
Dalmayne, E. (2020) Fighting police abuse and racism. workersliberty.org
Dalmayne, E. (2020) Deporting An Autistic Black Man Exposes This Government’s Hypocrisy On Racism. Huffington Post, huffingtonpost.co.uk
Fallon, C. (2021) Call for police to get mandatory neurodiversity training after officer assaulted young autistic boy in school. Channel 4
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: Failures in identification. Emergent Divergence, emergentdivergence.com
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergent Divergence, emergentdivergence.com
Powell, J. (2021) Mum slams school as autistic son, 12, handcuffed by police on first day of term. The Mirror
The Guardian (2021) Met police officer dismissed for hitting vulnerable girl ‘more than 30 times’ with baton
Tint, A., Palucka, A. M., Bradley, E., Weiss, J. A., & Lunsky, Y. (2017). Correlates of police involvement among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2639-2647.