This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us.We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article.There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.
This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.
This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).
Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?
There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.
There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.
So, what constitutes trauma in Autistic people?
First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.
We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.
We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.
“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”
Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.
“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”
Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).
A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.
“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””
Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.
Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.
Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.
Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile. I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.
We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.
All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.
The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).
“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”
Milton, D. (2012)
This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).
Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.
An ABA practitioner physically holding our hands still, is a form of restraint.
But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.
Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.
David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.
It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.
Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.
What does all this lead to?
Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.
The next piece in this series will explore the systemic failings in identification and lack of accessibility.
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’sservice, 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.
With experience, passion, and an individualised approach in close collaboration withfamilies, I help them work towards holisticchild and family-centered solution
Adkin, T. (2021) Behaviourism damages Autistic children. tanyaadkin.co.uk
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.
Farahar, C. and Gray-Hammond, D. (2021) Autistic people and crime. Aucademy. YouTube.
Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.
Garfinkel, H. (1967). Ethnomethodology. Englewood Cliffs.
Gray-Hammond, D. (2020) Autism and the future of diagnostic criteria. emergentdivergence.com
Gray-Hammond, D. (2020) My experience of restraint in a psychiatric hospital: This is not a love story. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Halle, M. and Cardy, P (2021) ‘Overreaction’: Autistic son handcuffed by police on first day of term at Notts academy. Nottingham Post
Hernandez, P. (2021) Who am i? nottootrapped.wordpress.com
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887.
Parry, H. (2015). Shocking rise of «mate crime»: How children with autism or Asperger’s are being bullied, abused and robbed by so-called friends.
Pearson, A., & Forster, S. (2019). Lived Experience of Friendship and Mate Crime in Autistic Adults.
Rose, K. (2018) An Autistic Invalidation. theautisticadvocate.com
Sinclair, J. (2020) Autism exploitation: How to spot it and how to make it stop. autisticandunapologetic.com
Vance, T. (2019) #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Walker, N., Farahar, C., Thompson, H. (2021) What is neurodiversity & why’s it important? Nick Walker with Chloe & Harry: Aucademy in discussion. Aucademy. YouTube.
Wise, M. (2019) The long term impact of bullying. Neuroclastic. Neuroclastic.com
Zarse, E. M., Neff, M. R., Yoder, R., Hulvershorn, L., Chambers, J. E., & Chambers, R. A. (2019). The adverse childhood experiences questionnaire: two decades of research on childhood trauma as a primary cause of adult mental illness, addiction, and medical diseases. Cogent Medicine, 6(1), 1581447.
For the better part of a century now, addiction has been treated largely as a matter of criminal justice, with some focus on medical treatment. Unfortunately this approach leaves a considerable amount out of the discussion. Addiction is a complex matter, with a lot of it coming down to socio-economic issues. As an Autistic addict, I am keenly aware of the social issues that contributed to my addiction, and that is what I hope to discuss in this post.
Why do people become addicted to things? Scientifically, it is because certain activities provide a reward response in the brain, and essentially this is what people become addicted to. The development of that addiction, in my opinion, tends to be dictated by a set of falling dominoes that create an environment for such a thing to happen.
The first point to consider is this; I have never met an addict who was not struggling with some kind of mental health concern, typically it is trauma related. Okay, honestly? It’s always trauma related (in my experience). So we have to think about the environment that traumatised the individual. We know that certain groups face more challenges when it comes to meeting the needs of themselves and their children.
This is often painted as a moral failing, but truthfully it is a systemic failure on the part of a society that demonises and punishes people for living in poverty, after putting people into poverty in the first place. Even now, in 2021, huge swathes of the population rely on food banks and other social welfare to survive. Could this problem be mitigated by the system? Absolutely. Sadly, the people in charge of that system tend not to do anything about that.
We also have to consider that for Autistic people, they are much more likely to experience violence and bullying at the hands of their peers and family. Continuous mistreatment by peers and family members can create a perfect storm for the development of trauma related mental health concerns, and subsequent dependence on addictive behaviours.
Autistic people live in a social context that forever tells them that who they are is wrong. For me this amounted to wishing that I could exchange my social identity for one that could better assimilate. That new identity was one of a drug user, a person who regularly went out partying, and revelled in the hedonism of the culture he was trying to assimilate into. However, this soon was not enough.
To keep my mental health at bay, I needed access to appropriate treatment for my mental health concerns. Unfortunately, Autistic people have considerably less access to mental health services because of the prevailing belief that mental health issues are “part of the territory” of autism. This is obviously a mistruth, but it is a prevalent belief.
Without access to mental health services, my substance use began to spiral as I sought stronger and stronger relief from my suffering.
This leads neatly into the next part of the social context of addiction; crisis-driven intervention.
Western society in particular, will only intervene and provide support when a person is deep in crisis. For Autistic people this can mean that we are ignored for years, because we don’t present like a neurotypical person when in crisis. These types of interventions literally kill people, and I suspect that if more effort was made to identify Autistic addicts before they died, this particular intersection would be discussed a lot more.
We also have to consider that society as a whole is not designed for Autistic people. Even the simplest of tasks can lead to burnout and anxiety, driving people towards emotional outlets that could ultimately lead to addiction.
Autistic people are a socially vulnerable group, not because of a lack of social skills, but because of a system that is not only not designed for us, but actively penalises us for being Autistic. Until that system is fixed, Autistic people will forever be at risk of trauma and subsequent addiction issues.
Is it any wonder we get “hooked” on things that feel rewarding when society is doing its best to oppress us?
Edit: I am in no way saying that Autistic researchers work is tokenistic in this post, I am trying to talk about how studies such as S10k claim to have included Autistics in the planning of their studies purely to try and justify unethical research.
It seems with each passing day there is a new article about a piece of autism research being conducted. There are always two common themes. The first is that the research is conducted by non-autistic researchers, who generally only include Autistics in a tokenistic way at best. The second is that pretty much all of the research aims to reduce the number of Autistic people, either by reducing diagnoses, or literally erasing us.
One could be forgiven for thinking that ableism is having a renaissance, but the truth is much more grim than that. The truth is, that ableism isn’t re-emerging, it never went anywhere. The main observable difference that I find now, is that people (researchers in particular) are being much louder about their efforts.
Their want to erase us, reduce us, eradicate us, has become much more overt.
Is it any wonder that Autistic people around the globe are suffering right now? Our entire lives we have endured systemic oppression and (not to mince my words) systemic violence, and now we face a world where we are literally being shown how much we are not wanted. It’s sickening.
We have the notorious Spectrum 10k project, who definitely don’t support eugenics *wink wink*, but also can’t guarantee that the data wont ultimately be used for that. Canada now has the Q1k study, which to me seems to just be S10k lite. We also have the study that pushed me into writing this. Reported by various news outlets as an “early-intervention baby therapy”.
This therapy, supposedly, reduces Autism diagnoses by teaching infants “better” social communication. One need only read the published study to realise that these researchers don’t care about the wellbeing of Autistic people.
The medical model is strong with this one.
The study is riddled with pathologising language. The study outcomes are also highly questionable. Why do you want to reduce the number of people receiving an autism diagnosis? From where I am sat, it seems that they either don’t want us to have support, or they have a problem with Autistic people and the number of us who exist.
No, there is no renaissance for ableism. It’s here, and it’s always been here. Society is afraid of us. To quote a term I recently saw used by Dr. Nick Walker, it’s autistiphobia. Something about our existence makes non-autistic society deeply uncomfortable, and in a more literal sense, hateful.
The thought that keeps going through my head is this; if they can’t bring themselves to actually improve our lives in a meaningful way, can they not at least let us live those lives? Why do we need constant reminders that our existence is so offensive to them that they will either ignore us, or erase us.
We are human beings with a right to live happy lives.
At what point did “Autistic” become synonymous with the word “broken” or “burden” in the non-autistic world? Even as I write this, researchers rush to speak over us, presuming, it seems, that we are incapable of speaking for ourselves. The world has a saviour complex, but we don’t want a saviour. We want people to listen to us.
We are treated like a perplexing puzzle that needs to be solved immediately. As if our existence is a public health crisis.
We have been explaining ourselves for long enough. It’s time that society at large began to listen to us. Where millions are poured into erasing us, there is a deficit in the support of those Autistic people who have been trying to help us for years.
I am not a crisis to be fixed. I am a human being, and I am sick of being held down.
There are many myths about psychosis. Chief among them that those of us who experience it are dangerous individuals. While there are predictors of violence towards others in psychosis (such as co-occuring substance use), generally those experiencing psychosis are more likely to be victims of violence than perpetrators.
As Autistic people, or parents of Autistic children, we can often find ourselves lost when it comes to mental health support systems. For many years, poor mental health has been treated as a part of the diagnostic criteria.
This is 100% incorrect.
While mental health issues are incredibly common amongst Autistic people, they are generally the result of trauma, and never a direct result of being Autistic. I know for myself that being in the CAMHS system, my mother and I were invalidated at every turn.
What they never managed to recognise in me was that I was entering what would be called the “prodromal phase” of psychosis. What this essentially means is that they missed the warning signs that I was heading towards psychosis.
What were the warning signs?
One of my earliest memories is of a hand materialising out of my mothers bed, to offer me a chocolate bar in my cot. I believe I was around 2-3 years old. When I reached out for the chocolate bar, the hand disappeared. I cried and cried until my mother came to comfort me.
I was unable to voice what I had just witnessed.
Throughout childhood and teenage years, I experienced terrifying “night terrors”. What they actually were was hallucinations and waking nightmares that were so vivid I still remember them to this day. They were put down to fevers by doctors, even when there was no evidence of a fever.
Finally at the age of 18, my mind snapped. I started hearing voices and suffering paranoid delusions. No one would be aware of this until I was well into my twenties, because the psychiatrist believed my mask, and I buried the experience under mountains of prescription and illicit substances.
Now, at 31, I have been stable for around 5 years, finally receiving appropriate treatment and care for my mental health conditions.
So, how can you recognise psychosis in your child or teenager?
First of all, look for a change in affect. This means a withdrawal from usual behaviour, often manifesting as a depressive state. Alternatively, they may experience a euphoric state that leads to them taking risks to their personal safety, known as mania or hypomania.
Perhaps they have become irritable or aggressive? While psychosis can’t be used as a solid predictor of violence, they may become more overwhelmed.
Does your child or teenager appear to interact or react to stimuli in the environment that doesn’t exist? When I am stressed, I often hear phones ringing, doorbells chiming, or people calling my name. None of it is actually happening.
Finally, are they becoming suspicious or paranoid? People experiencing psychosis can often develop paranoid delusions. For me this included beliefs such as my food being poisoned, or that I was trapped in a computer simulation.
While full blown psychosis doesn’t usually manifest before the late teenage years, it is important to be aware of the signs. I often wonder what my life would have looked like if someone had spotted the indicators earlier.
We can’t allow mental health services to fail our Autistic children and adults.
As Autistic people, we are uniquely wired to find the truest forms of beauty in the world. Our eyes can catch every detail of the rainbow in the mist of water, or the delicate complexity of a spiders web. Still, many of us bring havoc, wilfully and determinedly breaking that which should bring us comfort.
No human is above their destructive nature. Autistic and allistic alike.
One might look to more inclusive minds for hope, yet still they harbour thoughts that contribute to oppressive behaviours and attitudes. What hope then for Homo Sapiens when our greatest minds can not tear out the weeds at their root?
Even as I write this, I am aware of my own internal biases, and aware that I am unaware of many more.
The diversity of our world and society is where the truest forms of beauty lay, and yet mankind threatens to destroy that beauty in the name of personal gain, a gluttonous need to horde an abstract concept in a significantly less abstract vault (often unaware that the vault hasn’t existed for years).
The human race will sooner destroy itself than embrace difference.
We, the different, are marked for eradication, while those deemed to continue the status quo decide which of us are worthy of life.
All that is good decays, while we (the so called apex predators) quibble over what deserves preservation.
If we are to survive, the different must unite, and fight the rising tide of ‘sameness’ culture.
In this post, I will be showcasing the artwork of Blake Jackson, diagnosed with paranoid schizophrenia.
Blake draws pictures of his psychotic experiences, and it is my hope that you will all learn from these pieces of art.
This piece is called ” Beauty of the beast”
This creature first appeared to me around two years ago. It would perch itself on the end of my marital bed. Simply stare at my wife and I and occasionally snort to make its presence known. It terrified me so much I couldn’t sleep. It does appear to me still but not as much as it would have but believe me that is still too much.
This piece is called “The Smile”
I refer to them as the shadow creatures. They are very tall in appearance, I would say around the 7 ft mark. They attach themselves like a parasite to its host and will suck the life force from the human theyve chosen. They manifest through the strange rectangular portals.
This piece is called ” Tardigrade”
I will often see this one scurrying across the ceilings. When spotted it will stop dead in its tracks, like when you see a spider and it seemingly stops, aware that you’re looking at it. It has full control of its neck and can do a complete 180⁰ turn to stare directly at you.
Shes a seemingly innocent elderly Chinese lady to begin with. Has an issue of watching us through the windows of our home. Its only when she enters into the house that she transforms into this creature. Can be found hiding under the children’s beds just waiting.
I have had a real issue surrounding food and drink thats not prepared by myself or ive not watched over during the making process. I’ve had the very real belief I was being poisoned and the hallucinations surrounding drinks can range from warning symbols appearing in the drinks to just outright green bubbling liquid where there should be coffee. I tend to make it myself now or my wife will test it for me if she can see im uncomfortable.
“No drinks available “
For quite a while I had believed, after seeing, there was an octopus living in my kettle. The cephalopod had , for some reason, chose this new home to live in. It disrupted my coffee drinking as I would have to check to make sure it wasn’t real.
“The plague doctor”
There are two of these that follow me. They’re sort of like yin and yang. Good and evil. The white one is good and makes conversation with me and helps me to achieve goals. He even assisted me in the birth of my youngest son, having delivered him myself. The black one is evil, he doesn’t speak only taps his finger on the door and beckons me to come outside. His aim is to get me into the woods and for me to hang myself.
Originally started as a dream, but have since seen her and her sisters congregating in crowded areas and blessing the crowds as they walk by. They mainly like to do their hail Mary’s on the rosaries. If you get too close they can get a little snappy.
This is bobo the clown. He first appeared to me around two and a half years ago and has to be the most miserable clown there is. He has a completely lacklustre laugh and a broken horn. His effort is that of someone who has lost complete hope and is a pit of despair. He will pop out around corners hooting his broken horn at you.
Blake Jackson is a paranoid schizophrenic, he was diagnosed at the age of 30 but had experienced symptoms throughout his late teens and 20’s. He turned to drugs and alcohol to cope with the stress of having hallucinations but has been sober from these for many years now. He has developed a coping mechanism through the medium of art. He depicts his hallucinations and delusions in his artwork. Blake is a proud father to 6 boys which he and his wife Gemma take care of.
Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.
This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.
S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.
Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.
What happens next?
You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.
Here’s what our kids need.
They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.
Simply put, autism + environment = outcome.
The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.
Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.
Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.
“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”
This means, that this research, could possibly be used to prevent the birth of Autistic babies.
Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.
There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.
10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.
So this means, they are either being very arrogant, or they are lying.
How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?
The answer, very clearly, is it won’t.
So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.
Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.
Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.
It gets worse.
When speaking at a UCLA symposium in 2018;
“If we know the mechanism, then we can prevent it. Cure the autism”
They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.
Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.
And that is why we suggest #BoycottSpectrum10k.
This letter was a collective effort from the team at #BoycottSpectrum10k
To read the full statement (with images) and sign, please click here.
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).
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.
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:
Lack of transparency. There is a disconnect between what the study is telling the public and what they received funding for.
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.
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?
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.
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.
Ethical issues. We want to know any and all ethical issues that were discussed in the ethical review of this study.
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.
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.
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.
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 link: – SEE PICTURE BELOW WITH ALT TEXT).
It is also specified that the steering committee will include the “senior scientific investigator team,” (Reference link – 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.
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.
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.
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 link – 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” (Reference link – “Wellcome grants awarded 1 October 2005 to 30 June 2021 as at 12072021”)
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 (Reference link – 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.
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:
“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).
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” (Reference link). 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.
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.
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.”
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.
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; & Project Coordinator Job Description ) 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.
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.
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.
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.
As well as signing this statement below – which will be sent to Health Research Authority and the bodies that awarded S10K funding –
Autistic people are not okay, S10k has served as a stark reminder that we are treated as a burden upon not just the people that we love, but society as a whole.
Autistic people are subject to woefully inaccurate and outdated stereotypes that do a great deal of harm to us as a community. For a long time the Autistic community has pushed back against the idea of a linear spectrum, with the “severely disabled” at one end, and bright young mathematicians at the other end. Despite this we still have the likes of Simon Baron-Cohen espousing the need to preserve the young men who have mathematical skill, should a cure or pre-natal test be developed. This says a lot about his views on Autistic people as a whole. It’s eugenics, funded by a capitalist society that decides the value of our lives based on our financial productivity. Eighty years since Hans Asperger “saved” the useful Autistics, while dispensing the lives of those he deemed unworthy, we are still fighting for the right of all Autistics to exist, regardless of special skills or capitalist worth. In 2021 are we witnessing Simon Baron-Cohen morphing into the Hans Asperger of the 21st century?
The truth is, Autistic people are more than a medically diagnosed group. We are an identity-based minority, with a rich culture. A culture that we are excited to share with the world, even in the face of the worlds abject hatred of all that diverges from the neuromajority.
We are everywhere, we are your doctors, your lawyers, your shopkeepers, your shelf-stackers. We entertain you as artists, actors, directors. We are your friends, family, neighbours. Even if we aren’t yet identified (largely thanks to those inaccurate stereotypes skewing the diagnostic process).
We are human.
We have thoughts, feelings, emotions.
We have deepempathy and compassion. It can be overwhelming. S10k is overwhelming, which is how it felt last week when Spectrum 10k was announced, by non-autistic researchers, led by two non-autistic men who have strong links to organisations abhorred by the Autistic community, and supported and promoted by white men, cure culture, and an all round attitude of being pro-eugenics.
S10k has been peddled by people who are not autistic, don’t understand autistic culture, and don’t even understand the nature of this research. Indeed, nobody understands the nature of this research because of the secretive nature of those in control. The truth has been obfuscated in an attempt to gaslight Autistics into giving their DNA to those with ill intent, or for future use by those who mean us harm.
“There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”
Are we really at the point, in 2021, where we have to beg for our right to exist?
Because if that is the case, we are collectively pleading with you to boycott this study.
How can we ignore the fact that Baron-Cohen and Gerschwind have previous ties to Autism Speaks and Aims2Trials. Both of these groups are known to either look for a cure, or fund those who are.
Why are we pleading? The effects of this betrayal by society have taken a huge toll on our collective mental health. In the week since this has launched, the damage that has been done has been immense, imagine what further damage this study could do if left to fulfil it’s aims.
The study claims to be looking into the causes of poor wellbeing in Autistics. They already know what causes it, and it’s not in our DNA. It is, however, quite possible that the thought of our parents having the choice to abort us does cause the poor wellbeing they claim to be so invested in preventing.
Imagine what the Autistic community could do with that money; We could train the whole of the U.K on improving mental wellbeing for Autistics, training on supporting us in a disabling environment.
Are you Autistic? What would you do?
Will you stand by while our DNA is misused by those who seek to destroy us?
Please, do not give your DNA to these people. Do not allow them to destroy the rich culture that we have spent decades cultivating and nurturing.
The Autistic Community.
This article was a collective effort by the team at Boycott Spectrum 10k and the Autistic community at large.
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