There has been a lot of hostility to the Spectrum 10K project on twitter. In this blog post I will reflect upon this, alongside mention some additional aspects of Spectrum 10K which I have not seen commented upon.
Some autistic people are against all biological investigation of autism. For example, they might think it is eugenicist, a waste of time or a far lower priority compared to changing society. So it makes sense that people with these views would reject Spectrum 10K. However, given the level of hostility to Spectrum 10K, it seems that lots more autistic individuals are against all biological research on autism than I realised or a lot of people think there are specific problems with Spectrum 10K which are not present in at least some other biological research on autism. It is the latter group I have in mind for this discussion.
One reason why I was surprised by the hostility is that Spectrum 10K seems less problematic than most biological research (which is not to say it is problem free, I will discuss problems below). Most biological research on autism aims to correlate biological factors with autism itself, i.e. with people who meet the diagnostic criteria. So far as I can see, Spectrum 10K is aiming to do something different. It aims to correlate biological factors present in autistic people with environmental factors. In this regard, Spectrum 10K is studying an area which is completely ignored by much biological research on autism. It is actually including the environment in scientific research. If you think, as I do, that issues of flourishing and disability ultimately involve both biology and the environment (and much besides them) then this is a good thing.
It opens a range of possible practical benefits compared to most biological research on autism. For example, imagine it was discovered that some biological factors are correlated with some sensory issues caused by particular environments. This could lead to two options. Firstly, change the environment. Secondly, develop a medication which specifically targets that biological factor, alleviating the sensory issue. Contrast Spectrum 10K’s approach with typical biological research on autism. It generally just finds endless biological complexity. But imagine if typical biological research on autism found a relatively strong biological factor present in most autistic people. What practical benefits could follow from this? It does not give us information about what part of the environment to change. It also means that any medication developed would probably affect lots of autistic individuals in a major way. That starts to look like a so called ‘cure for autism’ which so many autistic individuals are against. So it seems to me that Spectrum 10K has more likelihood of producing practical benefits and less likelihood of being eugenicist compared to most biological research on autism.
There are certainly significant potential issues with Spectrum 10K. Firstly, scientists have lots of sophisticated tools for investigating biological data. Are they going to use equally sophisticated tools for investigating the effect of the environment? They need make sure that they study a wide range of environmental factors and categorise those environmental factors in a nuanced way. They also need to understand how these environments affect autistic individuals through using sophisticated measurements of wellbeing and through understanding the phenomenological experience of autistic individuals. Secondly, Spectrum 10K will have much more statistical power compared to most biological studies given the sample size. This could be a significant positive but it also could cause more harm than good. A larger sample size can often drown out individual variation. It might only find commonalities at a broad level and miss smaller groupings of commonalties which only exist on a smaller scale within the sample size. Thirdly, there is the problem of epigenetics. Spectrum 10K will look at the relationship between biology and the environment, such as establishing that people with a specific gene have problems in a specific environment. However, another relationship is possible, namely that the environment might turn on the gene. So Spectrum 10K might mistake one causal relationship, biology plus environment resulting in lower wellbeing, for another, biology being present due to the environment and is unconnected to lower wellbeing. I do not know how Spectrum 10K will tackle these problems but certainly many studies are deficient in these matters.
Finally, some people think that, in contrast the claims of Spectrum 10K, that this data may end up in the hands of other organisations which will misuse it. This is a potential problem inherent in all biological research on autism. If anyone has any detail on what track record Cambridge has in relation to breaking promises or on data breaches, I would certainly be interested to read it.
Overall, if someone rejects all biological research on autism then it makes sense to reject Spectrum 10K. However, for all its potential problems, it seems to me a step in the right direction compared to most biological research on autism. It might, like most biological research, produce nothing of use. However, as much as I think we need to radically redress the balance of funding between biological investigation of autism compared to non-biological investigation, I do think this type of biological research has more potential than most biological research on autism.