I have been following the reaction to the Spectrum 10K project by monitoring the #Spectrum10K and #StopSpectrum10K hashtags (Spectrum 10K is a project aiming to gather the DNA of 10,000 autistic individuals). I have often seen the claim that the depression and anxiety which many autistic individuals experience cannot be caused by autism. Therefore, if we want to reduce the level of depression and anxiety in autistic people there is no point studying the causes of autism. In this blog post I will analyse this claim.
It is commonly claimed that many autistic individuals have such high levels of depression and anxiety because our society does not accept them or accommodate them. Some people can be hostile to other people who are different and this rejection can have a negative impact upon those people who are different. Also, society is set up to accommodate some people whereas other people whom it is not set up for face many barriers in daily living. These claims seem correct. The question is whether the cause of autism could cause depression or anxiety in addition to the depression and anxiety caused by societal response. I will now outline two possible reasons for thinking the causes of autism can cause depression or anxiety.
In relation to non-autistic individuals, depression and anxiety can result from many factors. Some people get depressed or anxious because how their life is going. To say they get depressed or anxious due to their genes would be a mistake. However, other people get depressed or anxious even though there life appears to be going well. There is no detectable environmental trigger of the depression or anxiety. In these cases it is plausible to say that causes internal to the individual are causing the depression and anxiety. So this is an example of depression and anxiety occurring for reasons other than how their lives are going. Could the same sometimes happen in autistic individuals? Now, it could be claimed that if this is happening in autistic individuals then this is due to the causes of depression or anxiety and not the causes of autism. However, do we actually know this? Is it possible that some causes of autism play a causal role in the characteristics associated with autism and can separately also play a causal role in producing depression and anxiety? I do not think this can be ruled out. The sheer complexity of genetics is immense, with any particular gene potentially acting very differently depending upon which other genes are present and what environmental interactions occur. We have only a very limited understanding of this. So it is possible that the causes of autism actually do also result in depression or anxiety which arise irrespective of an individuals life situation. To be clear, I am not saying this is the case, rather, I am saying we do not know enough to rule out this being the case.
Another reason to question the claim that autism cannot cause depression and anxiety is the possibility that what we call depression and anxiety in autistic people is different to depression and anxiety in non-autistic people. When an autistic person reports that they are depressed, and when an non-autistic person reports that they are depressed we take them as to both be experiencing the same thing, namely depression. However, it is possible that actually the phenomenological experience (how it actually feels) of autistic individuals when they report depression is different to the phenomenological experience of non-autistic people when they report depression. This phenomenological experience could arise because what autistic individuals and non-autistic individuals report as depression actually stems from different causes. This would give reason to think that actually what is being reported as depression is actually different in both cases. All this could also be the case for anxiety. If what we call depression or anxiety in autistic people arises from the causes of autism then the causes of autism actually can cause depression or anxiety in autistic people. Now, is there any evidence for this claim? The problem is that phenomenology is very difficult to do and it is very rarely actually done today, so this is not the sort of thing which we have much evidence upon (although I have often felt that my experience of depression seems different to phenomenology I have read relating to non-autistic individuals). Additionally, it raises a whole bunch of metaphysical and conceptual issues about what make two things instances of the same thing (I have published a couple of papers which partly discuss this sort of issue in psychiatry, but ultimately philosophers have discussed these issues for literally multiple millennia in areas other than psychiatry). Seeing depression and anxiety as the same, or not the same, in autistic and non-autistic people seems to be compatible with the evidence and with credible metaphysical and conceptual approaches. Again, I am not suggesting it is the case that depression and anxiety are different in autistic and non-autistic individuals, rather, I am showing that it could be a possibility.
In this blog post I am doing philosophy, aiming to show alternative possibilities rather than showing a particular interpretation is true. I aim to show that we cannot simply dismiss or discount the claim that autism can cause depression or anxiety. As such, I think this is not grounds, in itself, to object to biological research on autism. Of course, I have not addressed many of the other potential problems with biological research on autism in general and Spectrum 10K in particular which may give good reason to reject Spectrum 10K (I have discussed some scientific problems with Spectrum 10K in another blog post).
Monthly Archives: August 2021
The potential and pitfalls of Spectrum 10K
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.