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Jan 26 2023
Understanding Autistic mental health in a broader context

We often discuss anxiety and depression amongst the Autistic population. Some such as myself and Autistic and Living the Dream have pushed to get lesser discussed mental health concerns into the zeitgeist, but there is a problem with how it is framed in a more general sense. When most people discuss Autistic mental health, they discuss the individual experiences, I feel it is necessary to look at the bigger picture.

One of the reasons we centre our conversations on individual experiences is because of the medicalisation of acquired neurodivergence. Medical models of psychological wellbeing centre the experience of distress as the defining feature of what is then described as a disordered mind. It teaches is that acquired neurodivergence is the source of our suffering, placing the responsibility on us to adapt to an unchanging environment.

This is where Autistic mental health becomes complicated. In general, Autistic people favour social models of disability and neurodiversity-affirming approaches, and yet we are taught that further neurodivergence is a disorder. It directly conflicts with our understanding of our Self. It partitions off parts of ourselves and teaches us to eliminate them rather than co-exist. What we actually need is to recognise that distress from traditional “Psychiatric conditions” is as much of a reaction to our environment as an Autistic meltdown is.

The environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our responsibility to recover from that. In truth, the responsibility lies with the environmental factors that cause our distress. You are not suffering because of “illness”. You are suffering because the world is not made with your needs considered. When the world consistently abuses us, crosses our boundaries, and fails to meet our needs, we suffer.

Autistic people need to be allowed to co-exist with themselves. We need a world where the experience of distress doesn’t require us to get better but requires the world to do better. Lack of accessibility and invalidation of people’s lived experiences might well be one of the biggest causes of psychological distress in our society.

David Gray-Hammond 0 Comments
Jan 25 2023
Spectrum 10k will never be acceptable: Here is why

During my time in the Autistic community, I often heard murmurings of eugenics projects, but in all honesty, I was unaware of the reality of just how many sought to eradicate Autistic people. Perhaps then you can understand just how upsetting Spectrum 10k has been; not just for me, but for tens of thousands of Autistic people, for whom eugenics has been a mythical creature. This project has served as a rude awakening to a world in which we are not welcome. Such a world as the ones found in dystopian fiction.

They say that ignorance is bliss, and truthfully, it was. I yearn for a world where experts are only wrong, and do not harbour genocidal ambitions. Unfortunately, the Autism Research Centre in Cambridge, UK, are engaging on projects that each day take us closer to a world where Autistic people no longer exist.

Myself and the rest of the team at the Boycott Spectrum 10K campaign have literally given our wellbeing to this cause. Many, if not all of us, have been in some state of burnout since this started. We have fought hard to make it clear that we won’t stand idley by while things like this are enacted upon our community. So this latest attempt to draw us into consultation over this project has been a slap in the face.

Some may believe we can achieve more by coming to the table, but I want to tell you why that won’t work. There is no version of the current project that is acceptable. As the project stands, any input from Autistic people would be tokenistic. It would still have the same goals, it would still produce the same data with the same ethical issues. In order for this project to be acceptable, it would no longer be the same project. It would require new goals, new data collection, and new ethics approval. They would likely lose their funding as well as the people who provided it had very specific goals in mind.

For our input to mean anything, this entire project would need to be abandoned, and a new one co-produced with the Autistic community.

Unfortunately, this will not happen. The people involved in this project do not care for what research we actually need. Their values do not align with our community. If we came to the table, they would write down our views, and bin them once we left. Involvement with this project will bring nothing good, but it will empower them. If we come to the table, we legitimise their ambitions. We can not allow that to happen.

David Gray-Hammond 0 Comments
Jan 25 2023
A brief history of Spectrum 10k

In the summer of 2021, it was announced that a new study would be seeking the DNA of 10,000 Autistic people and their families. They wanted to do this to look at co-occurring conditions amongst Autistic people and improve our wellbeing.

Great right?

Wrong.

Upon further scrutiny, it became clear that there were no guarantees on how data would be used beyond the scope of the project. While project leads were quick to deny any eugenics oriented goals, they were going to sell the data on, and even stated that they “couldn’t guarantee” that buyers wouldn’t use the data for eugenics.

The researchers tried to distance themselves from eugenics claims, especially as one of the project leads had ties to an overtly eugenics oriented organisation.

They hired Autistic celebrities as representatives of the project. This was a blatant attempt to manipulate people. One of those celebrities went on to out themselves as a bigot, and all round awful person. Unsurprisingly, those celebrities are quiet these days.

Given the lack of guarantees on how data would be used, not to mention a number of other ethical issues that myself and the rest of the Boycott Spectrum 10K team observed. We started the #BoycottSpectrum10k campaign.

One of the main things to come out of that campaign was our collective joint statement. The statement featured input from Autistic thought leaders, academics, and activists detailing every issue with the project.

This statement was given to the Health Research Authority.

It turned out, we were not the only ones who had contacted them about this. They took our statement and gave a promise to investigate our concerns.

We waited.

And waited.

We waited some more…

While we were waiting, Spectrum 10k was placed on pause, pending wider consultation with the Autistic community.

After what felt like an eternity of waiting, the HRA got back to us, claiming that they felt the promise of consulting the Autistic community vefore continuing with the project was sufficient.

For some time, there was little more than murmurings.

Then, recently, as 2022 was ending, and 2023 was starting; an Autistic academic made a post in a Facebook group asking Autistic people to come forward and be consulted.

Again, the use of an Autistic person was tokenistic, and for no other reason than to disarm our community.

And so, the Boycott team resurfaced.

Finally, approximately a week ago. Leaked screenshots of a communication came to our attention.

It was asking people to take part in a focus group about a project to use amniocentesis to investigate hormone levels and how that related to the development of Autistic babies.

So, as of now, it is undeniable that the Autism Research Centre in Cambridge, UK, has eugenics oriented objectives.

I hope that this gives you some idea of where we have been and where we are now. Honestly, many of us on the BS10k team have sacrificed a great deal of our wellbeing trying to put a stop to this.

The truth is, we probably won’t stop it, but we can make it so that others will think twice before trying anything similar.

David Gray-Hammond 0 Comments
Jan 22 2023
Spectrum 10k researchers have given up on hiding their eugenics agenda

CW: Termination of pregnancies, amniocentesis, pre-natal testing, eugenics

Edit: This is just a focus group at this point, but it is terrifying none-the-less.

Spectrum 10k is being run by a team from the Autism Research Centre (ARC) attached to the University of Cambridge. The scandalous research project has been a source of contention for a couple of years now, with researchers showing their flagrant disregard for the wishes and wellbeing of Autistic people in overt ways. Despite their claims that this project has no ties to eugenics, a leaked communication from ARC has now confirmed their intentions.

Find images below

The above images detail a project that will use amniocentesis to investigate hormone levels during pregnancy and how that relates to the development of autism in infants. This is troubling for a number of reasons.

You have probably heard of amniocentesis if you have had a child. It’s a test that involves taking a sample of amniotic fluid from the womb. Typically, this is used to test for Down Syndrome. If a pregnancy is found to test positive, the mother is offered the opportunity to terminate the pregnancy. Regardless of the complex reasons why someone might choose this, it is still eugenics.

Amniocentesis represents a huge ethical issue in medicine. Not only does it put the viability of a pregnancy at risk, it also provides parents with the opportunity to abort disabled children. It raises questions about quality of life, and right to life. Many people have this test, it is an everyday occurrence. Unfortunately, most people are not active in disability communities and can not conceive of why such practices are harmful and upsetting to our community.

In fact, doctors and midwives can be very pushy about amniocentesis. I have heard stories of mothers being tricked into consenting to the test. It highlights an issue where disabled people are viewed as less-than human and as a drain on resources and parental wellbeing. We ate told it is a kindness to prevent the birth of disabled people because we have been conditioned into believing that disability is a tragedy.

So why is it significant that the ARC is running this study?

It has one logical conclusion. The development of a pre-natal test for autism, that will allow for the termination of Autistic pregnancies. When you consider this alongside the Spectrum 10k project, it really shows just how desperate this research centre are to end the existence of Autistic people.

This sort of research comes from the twisted “ethics” of people who are so unaware of their own privilege that they are unable to conceive of Autistic people’s humanity. These people do not care for Autistic people. They only care about eradicating us. Neuronormativity in society has reached a terminal point, where we are willing to end the lives of people who are unlikely to conform to cultural norms.

If you threaten the status quo, they threaten your right to life.

Simon Baron-Cohen and his team are eugenicists. There isn’t any question about it. The research that has come from them over the years has been harmful (to say the least), but now the future of the Autistic community is in jeopardy. All Autistic people have a right to life, no matter how inconvenient it is for others.

I ask any of you who are approached to join this project to refuse. Tell them why they are harmful. Tell them why we will not stand for this flagrant disregard for the sanctity of Autistic lives.

We owe it to the Autistic people yet to come to make this kind of research unviable. It needs to have career ending ramifications for anyone who tries to end us.

David Gray-Hammond 3 Comments
Jan 13 2023
Autistic drug-users and the lack of solid guidance in support services

In the UK the majority of mental health support and treatment is guided by an organisation called The National Institute for Health and Care Excellence (NICE). Their guidance sets out how each and every person treated in a clinical setting should be managed, and what treatment modalities are appropriate and inappropriate. Except there is a glaring gap in this guidance, this gap is with regards to the treatment of Neurodivergent drug-users. They have guidance on the dual-diagnosis intersection where drug-use and “severe mental illness” meet, but nothing regarding neurodivergence.

This presents a unique challenge to practitioners working in the field of substance-use; it certainly contributes to the misconception that drug-use is a non-issue for Autistic people. Of course, if it was an issue, why wouldn’t it be in the guidance?

Neurodivergent people exist at multiple intersections of race, gender, sexuality, socioeconomic status, why is it so hard to understand that we often turn to drugs in order to self-medicate the trauma of our improper society? Weir et al (2021) showed definitively that while we are less likely to report using drugs, we are more likely to report self-medicating with what can be considered “recreational substances”. This pulls the plight of Neurodivergent people into the spotlight. Where self-medication exists, the potential for escalation to addiction exists.

Without concrete guidance in place, support for those existing at this intersection of experiences is likely to continue down a path of inadequacy. Some might ask what guidance should look like, while I have some specific ideas, I believe there is a wider need for understanding of Neurodivergent experiences in service providers. Guidance can’t just be drawn up in a “one-size-fits-all” manner, clinical commissioners and others involved in treatment policy need a nuanced understanding of our experiences.

This understanding can only come from co-production of material guidance. Autistic and otherwise Neurodivergent people need to be involved in the generation of guidance and policy. Having worked in service user involvement models, I have seen first hand the vital impact that the voice of those affected has on steering policy.

The truth is that many people writing guidance and policy have little to no experience of the real world effects of drug-use, let alone the real world impacts that drug-use has on Neurodivergent people in particular. Most of them are still rooted deeply in medicalised ideas of neurodivergence. Their are broad issues to consider.

Drug-use is intrinsically linked to socioeconomic status and further marginalisation. When you consider that only 22% of Autistic people are currently in any form of employment in the UK (Office for National statistics, 2020), not to mention the number of us existing in the court and judicial system; Neurodivergent young people represent a particularly large portion of youth offending populations (Day, 2022). We are 7 times more likely to be permanently excluded from mainstream education (Gill et al, 2017), representing 44% of all permanent exclusions (Vibert, 2021).

It seems as though Neurodivergent young people exist on a school to self-medication to prison pipeline, and that is assuming the drugs don’t end their lives before they have begun. The guidance is not only needed, it needs to consider all aspects of life that are contributing to it. We cannot claim that we are engaging in harm reduction while such things are happening. Let us not forget the horrifically traumatic experiences that Autistic people face (Gray-Hammond & Adkin, 2021). It’s a perfect storm for drug-use and addiction. We need guidance from official governing bodies.

It’s vital to mention that neurodivergence doesn’t end at 18. Neurodivergent young people turn into Neurodivergent adults. We need support and guidance across all age groups.

Until NICE and other clinical governing bodies work with Neurodivergent populations to produce guidance that is fit-for-purpose, we will continue to see the premature death and imprisonment of Neurodivergent people who are doing nothing but trying to survive in a system that sets them up to fail. We need guidance across all settings, but especially clinical ones.

Please sign this petition regarding the lack of NICE guidelines

References

Day, A. M. (2022). Disabling and Criminalising systems? Understanding the experiences and challenges facing incarcerated, neurodivergent children in the education and youth justice systems in England. Forensic Science International: Mind and Law, 3, 100102.

Gill, K., Quilter-Pinner, H., & Swift, D. (2017). Making the difference: Breaking the link between school exclusion and social exclusion. Institute for Public Policy Research.

Gray-Hammond, D & Adkin T (2021) Creating Autistic Suffering: In the Beginning there was trauma. Emergent Divergence

Office for National Statistics (2020) Outcomes for disabled people in the UK: 2020

Vibert, S. (2021). Briefing: Five things you need to know about SEN in schools: February 2021.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.

David Gray-Hammond 0 Comments
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