Autism from different points of view: two sides of the same coin

Abstract

Two articles by autistic authors but with very different views were published in the March 2018 volume of Disability & Society. One article expressed concern that there is a growing disdain for scientific knowledge among autistic autism researchers and an atmosphere of hostility towards non-autistic autism researchers. The other article provides concrete evidence of these concerns. It attacks the scholarship of non-autistic authors whose work offends them and proposes that non-autistic authors be excluded from ‘Critical Autism Studies’. This Current Issues present article critiques these two publications and proposes a way forward that involves critical thinking and proposing alternative interpretations. A couple of examples of what this might look like are given. The article argues that both autistic and non-autistic researchers have a part to play in moving knowledge about autism forward and both should be allowed to critique the other.

Keywords:

• Autism
• neurodiversity
• social model
• Critical Autism Studies
• theory of mind

Introduction

Two articles were published in the current issues section of Disability & Society volume 33, number 6 on 30 March 2018. These articles were ‘With the Silence of a Thousand Cries: Extremes of Autistic Advocacy’ (Bolton 2018) and ‘Redefining Critical Autism Studies: A More Inclusive Interpretation’ (Woods et al. 2018).

Both articles are written by autistic authors but with very different points of view. Bolton expresses concern at developments in what autistic people are talking about on social media. He says there has been a shift towards civil rights activism and autistic advocacy, and is particularly concerned with a growing lack of respect for different viewpoints, hostility towards non-autistic autism professionals and researchers, and ever louder cries for ‘Nothing about us without us’.

The second article demonstrates what Bolton is referring to. It is an attack on the book Re-Thinking Autism (Runswick-Cole, Mallett, and Timimi 2016). Woods et al. are upset with this book because it is a direct attack on the ‘neurodiversity movement’ and autistic identity. Woods et al.’s title is misleading because although they claim that autistic researchers should be actively ‘included’ in all research about autism, they also claim that the scholarship of non-autistic authors in this field is not valid. Therefore, Woods et al.’s article is not arguing for greater inclusivity but for a restriction as to who can write about ‘Critical Autism Studies’ and a restriction of what should come under this heading.

I too am autistic. I believe that the questions raised by Runswick-Cole, Mallett, and Timimi (2016) are valid and that they deserve a well thought out answer. I have never identified with my autism, but have always believed that I am so much more than autism. However, I have no problem if others choose to identify with their autism.

Contrast between lived and observed experiences of autism

Re-Thinking Autism (Runswick-Cole, Mallett, and Timimi 2016) is a challenging book because it challenges the status quo about autism. In particular, it questions the following:

1. Whether there is any such thing as autism, given that autistic people vary so much. To date, no underlying theory of autism has been published that fully explains autism.

2. Whether autism can have a neurobiological basis when there is no conclusive evidence of differences in the brain and no conclusive evidence that autism is genetic in origin.

3. What is the point of a diagnosis of autism when:

   1. it predicts nothing about the prognosis of the diagnosis – some children who are severely affected when young can grow into independent adults with their own families; while others need lifelong care; and

   2. there are no treatments that have been proven to work with all autistic children.

This is a direct attack on the neurodiversity movement, a political identity movement which claims that autism is a neuro-biological difference and that autistic people are not disabled by their autism but by society. Society needs to change to accommodate autism.

If there is no evidence that autism is neurobiological then this casts doubt that autism is actually a biological condition and not just a mental health problem. Questions about whether there is any such thing as a coherent condition of autism and whether a diagnosis has any real value is a threat to those who identify with their autism to the point where autism becomes their identity – a key aspect of neurodiversity ideology.

Woods et al. could have pointed out that Happé, Ronald, and Plumin (2006) demonstrate strong inheritability of the individual components within the triad of impairments (deficits in social interaction, communication, and restricted repetitive interests) which make up autism and that this is strong evidence that autism is genetic in origin. But instead of doing this or coming up with a reasoned counter argument, Woods et al. attack the authors and their scholarship. They claim that because the authors in the book are not autistic they are misrepresenting the neurodiversity movement and autistic culture. Worse, they claim that non-autistic academics do not have the right to publish in this area without including autistic authors who agree with the neurodiversity ideology.

Woods et al. feel that the area of ‘Critical Autism Studies’, started by autistic authors, should remain the preserve of autistic authors. What they feel Critical Autism Studies should do is as follows:

1. assume autism is a biological neurological difference (i.e. brains are structured differently);

2. not challenge the idea of autism being an identity;

3. investigate the power dynamics that operate in discourses around autism (i.e. autistic people are oppressed by non-autistic people);

4. question the deficit-based definition of autism (this is the foundation of neurodiversity in claiming autism is a difference not a disorder);

5. consider ways in which biology and culture intersect to produce disability; and

6. be emancipatory (i.e. free autistic people from the oppression of non-autistic people).

So, instead of making the field more inclusive, they are making it narrower and restricting those who can take part to autistic academics who believe in the neurodiversity ideology. Basically, they are attempting to censor the work of those (autistic or otherwise) who disagree with the neurodiversity movement.

This fulfils precisely the fears expressed by Bolton. They are demonstrating a disdain for science and a fundamental lack of respect for different viewpoints. Instead of reasoned argument as to why they disagree, they attack the scholarship of the authors of the book Re-Thinking Autism. They then go further and try to exclude non-autistic authors from the field of ‘Critical Autism Studies’.

Seduction of the neurodiversity movement

The neurodiversity movement is extremely seductive. Even Runswick-Cole admits that she was attracted by its ideas because it ‘offers confirmation and a political identity that allows people to celebrate their sense of self’ (Runswick-Cole, Mallett, and Timimi 2016, 24). What people get from the neurodiversity movement that should not be underestimated is contact with people who struggle the same way as they do and an echo chamber that makes them feel that they are not alone. These are extremely powerful. Many autistic people do have a desire to connect emotionally with people and to fit in. The neurodiversity movement meets these needs and often this is the first time that someone has felt at home with a group of people.

The problem is that this comes at an extremely high cost: people get trapped in their own minds, their self-esteem reduces in the long term, and it generally disables them because they end up living in an ‘autism bubble’. Society does not listen, does not change, and there is no way forward for them. Autistic people who suggest a way forward that involves meeting the world on its own terms (while requesting reasonable adjustments) are accused of ‘internalised ableism’.

A way forward

In the other Current Issues article, Bolton expresses a very different view. He highlights several key works by Simon Baron Cohen that have met with a lot of criticism from autistic people and argues for respect for science.

I wonder whether a more constructive way forward would be for autistic researchers to critique work by non-autistic authors by re-analysing the data from the autistic perspective to come up with alternative explanations.

Body odour social cues are misread by people with autism

As an example of reinterpreting the data, consider the article ‘Altered Responses to Social Chemosignals in Autism Spectrum Disorder’ (Endevelt-Shapira et al. 2018). This is a study of the reactions of autistic adult males versus non-autistic adult males regarding the smells of fear and calm. The results are that non-autistic men become more aroused when they smell fear and their arousal is reduced when they smell calm, but the opposite is true (in general) for autistic men. The interpretation is that body odours’ social cues are misread by people with autism and that this might provide an explanation regarding the difficulties autistic people have with social interaction.

There appears to be an assumption when interpreting the results that the reaction to these subliminal smells is innate and not learnt. Given this assumption, the interpretation seems reasonable.

What if the reaction to subliminal smells in not innate, but learnt? Then the reaction could be because of the difficulty with social interaction. Perhaps in the context of social interaction, interacting with someone who is afraid is easier because they are less likely to want to engage in (meaningless from the autistic point of view) social chitchat. Perhaps if you are feeling anxious about engaging socially with other people, finding someone else who is also anxious helps. Perhaps they might be autistic too.

Conversely, someone who is calm will be much more likely to want to engage in social chitchat, which might provoke an anxiety response in the autistic adult. Note that the experiment was not performed in an environment designed to produce fear in participants.

This might be an alternative valid interpretation of the results, especially if it is not known whether reactions to subliminal smells are innate or learnt in humans.

Theory of mind

Now look at Baron Cohen’s work ‘Theory of Mind’ (Frith 2003). This theory is the interpretation of data from a number of carefully thought out experiments where autistic children perform differently both to normally developing children and to those with Down syndrome. A few of these experiments are as follows (Frith 2003):

1. The Sally Anne Test: Sally puts a marble in her basket and leaves the room. Anne moves the marble to her box. Participants are asked where Sally will look for her marble. Autistic participants answer ‘in the box’; other participants answer ‘in the basket’.

2. A pencil is hidden in a tube that normally contains smarties. Participants are asked what is in the tube. All answer ‘smarties’ but then discover there is a pencil inside (a disappointment). Participants are then asked what the next participant will answer. Non-autistic participants answer ‘a pencil’; the others answer ‘smarties’. The autistic participants do remember that they thought there were smarties in the tube.

3. A sweet is put in the box and participants are expected to tell a ‘friend’ that the box is open, but a ‘thief’ that the box is closed. Autistic children find it extremely difficult to tell a lie.

These experiments among a few others are the foundation of the idea that autistic people lack theory of mind, which means that they are unable to understand the knowledge, beliefs, and intentions of others.

One way of challenging this theory might be to posit an alternative explanation to the data. All of the experiments involve some kind of deception or theft. Autistic children perform in the same way as other children on similar experiments that do not involve deception or theft. Perhaps an alternative explanation is that autistic people lack or have an underdeveloped theory of deception. They cannot understand why people would want to lie or act in a deceptive way. So, if you ask them whether they like your new shirt/hairdo/car, you will always get an honest answer. Unfortunately, many non-autistic people are offended by such honesty.

Could the notion that autistic people have an underdeveloped theory of deception be useful both in diagnosis and in pushing towards a society that is more accommodating of autism? Would it be helpful to try to persuade members of society to be more honest both with others and with themselves?

Conclusion

Both autistic people and non-autistic people have a part to play in moving knowledge about autism forward. But, in order to do this, we need humility on both sides and a constructive dialogue. Both should be able to critique the other as long as it uses well thought out logical arguments.

Bolton reminds us of the ‘double empathy problem’; that non-autistic people have just as much difficulty understanding autistic people as autistic people have understanding non-autistic people.

With such differing points of view, it is inevitable that data will be interpreted in different ways. Surely, the two sides coming together to see whether some kind of consensus could be reached in the interests of improving and increasing understanding of autism is worthwhile? Surely this has to be good in the long term for autistic people?

Disclosure statement

No potential conflict of interest was reported by the author.