Part 53: The Spectrum 10k Puzzle

Hello, and welcome back to The Autistic Writer. I had such lovely plans for this week’s blog. It’s the first anniversary of The Autistic Writer, and I had visions of writing a light-hearted article looking back at the fifty-two posts so far, summarising the things I’ve learned, the issues I’ve encountered, and the memes I’ve shared. It was going to be fun. Well, that idea has been torpedoed, thanks to the sudden arrival of the Spectrum 10k project, and the waves of shock, misery, frustration and anger it has sent through the autistic community. So the one-year retrospective has been postponed until next week, because I simply could not let this week pass without tackling Spectrum 10k. Hold on to your hats.

In the days since Spectrum 10k’s launch announcement, many autistic people have had their say on the matter, and some blogs on the subject have been simply brilliant in their forensic examination of the background. But I want to tackle the subject my way. I want to lay out some facts and some observations which – with no little irony – I want you to imagine as puzzle pieces. It will be up to you to decide how you want to relate these pieces of information to each other, and what picture you think they make when they are put together. Some of these puzzle pieces will be nuggets of information that are already more than familiar to you. Some, possibly, not so. But as you read, I hope they will provoke some thought, and encourage you to draw meaningful conclusions. Here we go…


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So what exactly is Spectrum 10k? Tell you what, instead of me trying to answer that question honestly, let me talk about what Spectrum 10k claims to be. After all, I’m expecting you to collect the following puzzle pieces to decide for yourself what Spectrum 10k really is. According to their website, Spectrum 10k claims to be the largest study of autism in the UK. Led by a team of researchers from the prestigious University of Cambridge, the study intends to involve ten thousand autistic people of “all ages and abilities.” Participants sign up via questionnaires, and then donate a saliva sample so that DNA can be examined. The participants also give consent for the researchers to access their electronic health records. The website claims that genetic factors are important in autism, hence their requirement for DNA samples. The website claims that the aim of Spectrum 10k is “to better understand how biology and environment contribute to autism, to improve diagnosis, support, clinical care and quality of life of autistic individuals and their families”. In a different part of the website, this is clarified with the stated aim of investigating the “biological and environmental factors that contribute to autism and common physical and mental health conditions for autistic people, such as gastrointestinal problems, epilepsy, anxiety and depression.”


A regularly quoted statistic about autism is that roughly 1% of the population is autistic. In relative terms, that’s a small number. However, it is almost certainly wrong, when you consider changes in diagnostic criteria, the potential numbers of autistic people who are either not diagnosed, or completely unaware that they are autistic. Many undiagnosed autistic people will have been, like me, diagnosed with other conditions instead, such as anxiety, depression, OCD, and so on. There is also great concern that many female autistic people have been missed out, as diagnostics focused on males for so long, and it is thought that social pressures have resulted in female autistic people behaving in ways that have made it less likely for their autism to be recognised. The situation with non-binary autistic people is likely to be more complex, still. Global racial and cultural factors add yet further complexity. All this means it is very likely that the true number of autistic people in society is higher than has been traditionally thought. This does not mean that we autistic people are not still a minority – we are very much in the minority. But we are a significant minority; and by this, I mean we are a minority group with significant numbers. This does not mean that we are more deserving of anything than a smaller minority group. It does however mean that the more of us there are, the louder our voices; the more of us can demand equality and fair treatment. None of this is a secret. In fact, the autistic community is loud and proud on social media. So, it is reasonable to expect that anyone involved in autism in a professional capacity would know all this. Of course they do. It is all common knowledge.


Speak to autistic people, and you’ll find a bewildering array of opinions about autism, because, well, we are all individuals, with our own thoughts and views. You know, like human beings. But certain common opinions do tend to emerge from the autistic community. Most of us feel that we encounter problems in the world, and these relate to how difficult it is to function happily as an autistic person in a world which isn’t set up to accommodate autistic people. It’s stressful. It’s hard work. We struggle with it. Autistic burnout is common. And yet many of us have safe places, or safe times, or safe routines, in which things feel better. Consequently, large numbers of us feel that the problems we experience stem not from autism itself, but from an environment that is often hostile to autism.


The difficulties experienced by autistic people are what has led to the classification of autism as a disability in many countries. In the UK – the country in which the Spectrum 10K project is based – autistic people are protected as disabled under the Equality Act 2010. This should mean that as a protected group, we are protected from unfair treatment and exploitation.


Some autistic people do not consider themselves disabled; they do not identify as disabled, and reject the disability label, at least for themselves. Some autistic people do consider themselves disabled, although not all of them see autism itself as the disabling factor – many autistic people have co-occurring conditions which they consider disabling. Some autistic people consider themselves disabled in the sense of the social model of disability – in other words, they feel that autism itself is not intrinsically disabling, but that the society, culture and environment we live in disables autistic people.


Various online polls regularly show that the overwhelming majority of autistic people value their autism, and would not want a cure. It’s not 100% – a small number of autistic people have had such a horrible time that they say they would accept a cure. I am not dismissing their views; in fact, I feel their pain, and it saddens me. But most of us reject the notion of a cure for autism, because we see autism as intrinsic to who we are. A cure for autism would mean, at its logical conclusion, the eradication of autistic people. However, as much as the subject of a cure for autism is discussed, it is an impossibility. As autism is a genetic difference from what is considered normal (actually just a majority, which is not the same), then even if you could administer a cure to every autistic person on the planet, the next generation of people would still throw up the genetic variations that lead to what we call autism. That’s how it works; it is the very basis of the genetics of evolution. You can’t cure autism, but that doesn’t mean you can do anything with it…


CRISPR genetic editing is a highly controversial, growing area of biological science. It is a technique of genetic engineering in which the genomes of living things can be modified. There are optimistic signs that CRISPR could be used as a cancer treatment. It is also expected that the method will be used to treated genetic diseases. To be able to modify genes, it stands to reason that it must be known how the specific genes relate to any given area work; the genes have to be mapped and functionally understood. Research using DNA samples is involved. Once a specific area of genetic function is understood, CRISPR can be used to make changes. Various scientific bodies are carrying out research into using CRISPR on human embryos. There is potential for hugely beneficial scientific and medical advance, and, as always, huge potential for abuse and unethical practice. Genetic screening is the process of testing a group for a genetic disease, either to see if the participants have the disease, or if they can pass it on to their future children. Antenatal screening in the early stages of pregnancy is a series of tests, for example, scans, blood tests, and so on, to determine if there are any health risks or anomalies affecting the foetus. This can involve testing for genetic diseases. As a result of antenatal screening in which problems, or the likelihood of problems, are identified, some parents choose to terminate the pregnancy.


Interlude: A brief message

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Autism is not an illness. It is not a disease. It is a neurological difference from what is generally considered to be normal, or standard. Hence the use of the terms neurodivergent and neurodiversity in relation to autistic people. However, the field of autism research, study, and identification is fraught with terminology that pathologises autism, making it appear to be people who do not know better that it is indeed an illness or disease. Autism is generally diagnosed – a term associated with illness and disease – rather than identified. Autism is referred to by medical professionals as autism spectrum disorder or autism spectrum condition. Autistic people are said by medical professionals and so-called experts to have deficits. In fact, almost all the language used to describe autism characterises it as problematic. There is a vast worldwide industry claiming to offer treatments, therapies, and interventions for autism, even though, as autism is not an illness, it is impossible to treat it.


The aforementioned worldwide autism industry turns over billions upon billions of dollars annually. People get rich on the back of this industry. Part of it is the so-called treatments, therapies and interventions. Part of it is the sale of vast quantities of autism merchandise, much of which is adorned with the highly problematic puzzle piece design (oops, my irony slipped out). But another aspect of the worldwide turnover of autism-related cash is the high-flying careers of autism professionals who acquire fame, fortune, and prestige as a result of their endeavours. One such person is the well-known face of autism research, Simon Baron-Cohen. According to Net Worth Post, Baron-Cohen’s net worth is $20 million. Baron-Cohen is considered one of the world’s leading experts on autism. He is also a director of the Spectrum 10k project.


Autism Speaks is a USA-based organisation, sometimes characterised as a charity, sometimes characterised as a research organisation. Autism Speaks states that its mission is, “dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions”. Autism Speaks has become known for a number of controversial stances on autism, which has led to the organisation becoming almost universally despised by autistic people. The controversies around Autism Speaks include, but are not limited to: 1.The production of a film in which the real mother of a real autistic child said that she had contemplated killing the autistic child. 2. Backing the disgraced physician, Andrew Wakefield who created and perpetuated the false theory that autism is caused by vaccines, in order to make financial gains. He has been struck off, but the damage he caused beggars belief. 3. Previously backing a search for a cure for autism, and desiring the eradication of autism. The organisation claims to no longer back searching for a cure for autism, but continues to characterise autism as a problem, and nurture attitudes to autism that most autistic people find unhelpful, discriminatory, and highly problematic. In 2007, Autism Speaks merged with Cure Autism Now – the name of which speaks for itself. When Cure Autism Now was formed in 1995, its first chairperson was the geneticist Daniel Geschwind. Mr Geschwind’s net worth is a measly $1.9 million – peanuts compared to Simon Baron-Cohen, and yet an absolute fortune to myself and many other autistic people. Daniel Geschwind does have something very much in common with Baron-Cohen, however. He is a “Chief Investigator” at Spectrum 10k.


A common worry for autistic people is that we feel othered by society. It is common for us to feel ostracised, misunderstood, and even feared. Non-autistic people have been led by negative media reports to expect us to be unpredictable, dangerous and violent. We are often unappreciated in workplaces, and struggle to make the same progress as our non-autistic peers (although that is not a problem for the many of us that cannot even get jobs). When we find people in social or professional settings that are sympathetic to us, we often find their sympathy is misguided, and we are infantilised by them. We are seen as strange, odd, and very often as problematic. We are more likely than the general population to be unemployed. Rates of depression and anxiety are higher in autistic people than in the general population. One of the top three causes of death in autistic people is suicide. And yet, as already stated, autism is not an illness. Time and again, people in the autistic community say that that they don’t want treatments, cures, or therapies. What we want and need is acceptance, equality, and a society that understands that we see the world differently than non-autistic people, we interact differently from non-autistic people, and we need the world to adapt to include us. Just include us. None of which needs genetic testing.


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The anti-vaxx movement largely owes its existence to Andrew Wakefield, who falsely claimed vaccines cause autism. Despite this claim being totally discredited, it persists, and now goes beyond autism. Current anti-vaxxers have claimed, for example, that the covid-19 vaccines insert 5g chips into the recipients, so that they can be tracked / mind-controlled (delete as applicable) by the government. Most people accept that vaccines have been incalculably helpful to the health of humanity. But when Wakefield made his ridiculous claims that were, for a long time, very widely believed, some people began to believe that the health benefits of vaccines were more than outweighed by the risk of “giving a child autism”. As a result, measles outbreaks, for example, soared, meaning many children suffered and indeed died completely unnecessarily. In other words, some parents would rather risk the serious illness and death of their child than allow their child to “become autistic”. And as the anti-vaxx movement still persists, so does this ridiculous belief about autism; that is quite literally worse than death. But why?

Why is autism seen by so many as so awful? That full answer is long and complex, and stretches back to the earliest days of autism research. Unhelpful and widely discredited ideas have a way of sticking around in subtle, unexpected and evolving ways. This is what Richard Dawkins understood when he first coined the term meme. Briefly, ideas have been perpetuated from the days of Hans Asperger, whose special children, he thought, were useful, but the less useful ones could be sent to their deaths. The memetic heirs to this are the concepts of severity and high-functioning versus low-functioning autism (concepts roundly rejected as misleading and grossly unhelpful by most autistic people), and the fear of some parents that a so-called low-functioning autistic child is simply not worth living, and by extension not worth giving birth to. It also stems from the days in which autism was thought to be caused by bad parenting, the so-called refrigerator moms, or refrigerator parents effect; another idea now completely discredited, but which lurks in the social consciousness, meaning many people just do not want to be parents of autistic children. It is also to do with the constant pathologising of autism in the media and the medical and psychiatric literature. It is to do with the social othering of autistic people, that way of seeing autistic people as odd, strange, suspicious, dangerous, unpredictable, and violent; people don’t want to be the parents of such children. It is to do with the so-called changeling effect; a child might seem “normal” (non-autistic) in early developmental stages, and then after a while parents notice things that lead to an autism diagnosis, and all the negative connotations already discussed that accompany it. Parents in this situation have sometimes characterised this as their real child being taken away by autism and replaced by the autistic changeling. As long as autism is pathologised as a condition, a disorder, a problem to be solved, this othering will persist, and autistic babies will be seen as undesirable.


The Spectrum 10k project proclaims loudly and proudly on its website, “The study will not look for a cure for autism and does not aim to eradicate autism. Every member of the Spectrum 10K team values and respects autistic differences and are working to promote inclusion, acceptance and dignity for autistic people throughout society.” I have already stated that Daniel Geschwind is an integral part of the Spectrum 10k project, and that he was the first chairperson of Cure Autism Now. The term cure is a medical term, adding to the drip-drip of pathologisation of autism. When the Spectrum 10k disclaimer says it does not aim to eradicate autism, it is a reference to eugenics; the idea that the human race can be improved by making changing genetic changes. This supposed improvement can theoretically be attained in various ways. Controlled reproduction, and the euthanising or reproductive sterilising of genetically undesirable individuals is one method. As science progresses, CRISPR could be utilised in eugenics, too. But Spectrum 10k assure us that this genetic eradication is not in their plans. Of course, this raises a question: What factors are or could be outside the control of their plans? Future changes to legislation could mean that Spectrum 10k’s promises aren’t theirs to keep, for example. Once the DNA is collected, and the database created, that data is not going away. The metaphorical genie is out of the bottle. Governments have a habit of exerting control over reproduction, with abortion laws, etc. There can be no guarantee that the Spectrum 10k data, its findings, and its conclusions will never be deployed in ways they did not intend. Indeed, Spectrum 10k director Simon Baron-Cohen has admitted, as quoted in an article from 2019, that genetic research may be used in unintended ways: “There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”


In a way, it is not even necessary for Spectrum 10k to proclaim they are not looking for a cure for autism. As we have already looked at, autistic traits emerge from naturally occurring genetic variations that underpin evolution, and so even if you could wipe out all autism right now, it would emerge again in future generations. But that doesn’t stop the people who fear autism, the people who do not want to give birth to or raise autistic children, from desiring a cure or the eradication of autism. Wherever that desire for a cure or eradication persists, there will be a demand for research, and where there is a demand, there will be a budget. The many millions of dollars that pass through Autism Speaks come from donations. Spectrum 10k receives its funding from the Wellcome Trust, a huge charitable foundation dealing in vast amounts of money. I do not know if the likes of Simon Baron-Cohen and Daniel Geschwind receive and salary or retainer fees from the funding. I’ve asked, but I’ve not been given an answer. But as we have seen, both men are financially well-off, and have made careers out of autism. Baron-Cohen has made numerous statements about autistic people, and carried out research, and written papers about autism that many autistic people find hugely problematic. As I discussed in a previous blog, Mindless, Baron-Cohen’s depiction of autistic people as not having a theory of mind has been hugely damaging to public perception of autistic people, perpetuating the othering that feeds into the social consciousness as autistic people being undesirables. This is interesting. Simon Baron-Cohen has made a living from autism, so you could say his livelihood depends on his autism work. As long as autistic people are seen as problematic, and deserving of research to get to the root of the problem (by extension, the search for cures, treatments, and eradication) Baron-Cohen will be in the money. And because, as we have seen, that cure and eradication is unattainable, his funding is unlikely to run out. So he doesn’t really have to worry about what happens to the genetic database he creates. Any problems that arise in the form of unintended consequences of the Spectrum 10k will be left to autistic people to deal with. The very same autistic people who were not even consulted about the Spectrum 10k project in the first place.


Spectrum 10k launched on 24th August 2021, and to most, if not all, autistic people, it came completely unexpectedly and out of the blue. The announcement, along with celebrity endorsements came as a shock. It seems fair to ask the question of how this sudden appearance of the project, with no prior consultation with the autistic community, sits with the Spectrum 10k claim that, “Every member of the Spectrum 10K team values and respects autistic differences and are working to promote inclusion, acceptance and dignity for autistic people throughout society.” Inclusion? We were not even asked. This goes to the heart of some very important and emotive principles, such as that of nothing about us without us. It is self-evidently obvious that any project that purports to be serving the interests of autistic people should include those autistic people from the very inception. The fact that this did happen casts a shadow over the whole project, and entitles autistic people to doubt every aspect of the project’s stated claims and aims. How can autistic people aspire to social equality and acceptance when they were overlooked by such a high-profile project that is actually centred on them? This simply perpetuates the othering of autistic people, indicating that we don’t even deserve self-determination.


So, that is all my puzzle pieces laid out for you. Context is everything. How the issues I’ve covered relate to each other, and what it all means as a big picture is up to you to decide. As always, I welcome your thoughts.


That’s all for this week. Until next time, take care, be good, stay proud.

Darren


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


5 thoughts on “Part 53: The Spectrum 10k Puzzle

    1. It’s been on the news, but the coverage has been many positive, and at best vaguely neutral. It’s not helped by the fact that high-profile autistic person Chris Packham is acting as an ambassador for the project.

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  1. I’m never a fan of collecting genetic data that can be used to identify members of a group that faces high levels of social stigma. Especially when that could turn into prenatal testing.

    The point you make about this being sprung on the Autistic community is also a good one. Why is something so large and high-profile happening without autistic input? It sounds like they’re more focused on saying the “correct” words than on protecting autistic people themselves.

    I love that Red has an online community for autism-related support, but I don’t love the idea of them reading about things like this. There’s so much overt and covert messaging that autistic people aren’t wanted by society, you know? I don’t like that for Red or for any other autistic person.

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