On Tuesday, the National Autistic society reported on the recent episode of The A Word, in which an autistic character is ill and suffering from a fever. The episode suggests that fever may improve behaviour and ability in autistic children.
Image alt: Little Asian girl with a thermometer and cold compress. Image by kdshutterman.
The short note published by the NAS was accompanied by a tweet.
#TheAWord is talking about the ‘fever effect’. Little evidence yet – more at https://t.co/CGtdeDoJVH – but what’s been your experience?
I will deal with that in a moment. First, let’s have a look at the information they linked to.
So far there have been no in-depth studies into the ‘fever effect’. The idea of the ‘fever effect’ came from parents saying they thought they had noticed their children behaving differently when they had a fever. This led to a small study in the US in 2007 of 30 children, with a high percentage of parents recording that autistic behaviours reduced in at least one area, such as hyperactivity and irritability.
They get points for noting that this was a parent led hypothesis, not one put forwards by autistic people or medical professionals.
They get points for mentioning the age of the study, and how small the sample was. Although, there are few studies into autism with a test group of more than 35, most of whom are male. I’m going to deduct marks for not driving home the point on sample size.
The researchers concluded that the changes in behaviour ‘might not be solely the by-product of general effects of sickness on behaviour’, but ‘more research is need to prove conclusively fever-specific effects’.
To an experienced reader of junk science paper abstracts, this screams “inconclusive, put no stock un these findings”, but to the layperson, the fact that the study does not categorically conclude against “fever effect” can be interpreted to mean that it exists. NAS loses marks for making statements that are likely to mislead, intentionally or otherwise.
Research work is continuing, with a large investment from Autism Speaks in the US to study the effects of body temperature on behaviour (read more about this here). This research is using mice-modelling. It will certainly be some time before we have rigorous and reliable scientific evidence about whether the fever effect really exists.
The link goes straight to the Autism Spraks article on the topic. Let me pluck out the key points not mentioned in the NAS statement.
The NAS mentions that the study is on mice. Here’s a more detailed explanation from the Autism Speaks article.
Their team will examine two types of mice: those with genetic mutations that lead to autism-like social dysfunction and those whose ability to generate heat and regulate body temperature has been impaired.
First off, we know that animal responses are not always analogous to human ones. If we trusted animal testing on its own, we would still be vehemently denying that smoking increases the risk of lung cancer, because it doesn’t commonly work that way in dogs.
According to a 1957 medical journal:
- “the failure of many investigators to induce experimental cancers, except in a handful of cases, during fifty years of trying, casts serious doubt on the validity of the cigarette-lung cancer theory.”
[CN: descriptions of inhumane animal testing]
SourceWatch – Smoking Beagles
With regards to that source, see RationalWiki’s analysis of their credibility, particularly on tobacco coverage.
So we have established that animal analogues are not particularly reliable. We are not dogs, nor are we mice. Our bodies will not always respond in the same ways.
Another point that has to be highlighted is that that it’s also debatable whether it is autism that the mice are experiencing. The scientists call it “autism-like social dysfunction”. What that means in practical terms is that they tweaked the genetics of mice until they found a way to make them act as desired. The problem here is that we are defining autism in neurotypical terms.
S.R. Salas (blog sadly not available) had written an excellent piece on the problems caused by defining autism by the standards of people who are on the outside looking in. I have done my best to recreate the key points in Defining Autism, do give it a read.
So far we have an inadequate definition of autism being used to test effects in a non-human analogue, founded on the theory of non-medical personnel and a study involving parent reporting and a miniscule sample size. The “fever effect” and research into it is already on shaky ground.
The most distressing issue with this post, though, is that the NAS didn’t add a warning. No highlighted box warning parents that fevers can be dangerous and should be treated, and that anyone with a high fever should be seen by a doctor. No warning of the dangers of encouraging a fever (including seizures, brain injury and death). Nothing.
Most parents of autistic children are sensible people, but as the rush on quack treatments such as MMS, hyperbaric oxygen, chelation and various faddish diets have shown, not all of them. There are people in the parent community who are willing to try anything, no matter how dangerous, to “recover” their child.
Opening up this kind of discussion to laypeople who may just be desperate enough to try some kind of fever therapy is simply too dangerous.
I want to add one last thing: If you had a fever, wouldn’t you be looking for comfort from your family? Wouldn’t you be inclined to slow down, rest, and engage in calmer activities until you felt better? With fewer distractions and less excitement, wouldn’t you also be more receptive to those activities?
It’s my belief that the observed effect is nothing more than the interplay of illness and energy limits. If your child is poorly and tired, or uncomfortable, they are expending energy to cope with that. This leaves less energy for sensory distractions or highly stimulating play. Some children may well choose different activities and have different skill levels in this situation. It’s not a “fever effect”, it’s the fluctuation of ” functioning” that autistic people have been describing for years in opposition to functioning labels. That NAS is tacitly promoting the idea of a “fever effect” disappoints me greatly.
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