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What is the double empathy problem and how does it relate to autism?

Within the Autistic community, there is theory that we speak about as though it is commonplace in human lives. In part, this is the double empathy problem in practice. However, not all theory that we speak of is known by wider society. Thus, it is my intention to demystify a small part of that theoretical knowledge in this article.

What is the double empathy problem?

The double empathy problem is a theoretical basis to explain why people with vastly different experiences of the world find it difficult to empathise with each other. It states that individuals and groups with differing cultural and life experiences struggle to understand the experience of the other due to having no point of reference within that opposing worldview.

How does the double empathy problem relate to autism?

Autism is broadly viewed by the wider world as a diagnostic category. It has been framed as a disorder affecting social communication that is pervasive and lifelong in nature. Autistic people, however, see autism differently. Autistic people view autism as an abstract concept with the only tangible aspect of it being the existence of Autistic people. That is to say, autism does not exist, only Autistic people exist.

Within this worldview, being Autistic has been conceptualised as an identity bound within the remit of the neurodiversity paradigm. As opposed to being a disorder, being Autistic is a natural variation of the human mind that prevents Autistic people from performing neurotypically, i.e. we can not assimilate yo neuronormative standards.

Consequently, perceived deficits in social reciprocity and communication are, in fact, the double empathy problem in practice. Because we are a minority group, our ability to communicate and empathise with others is viewed as deficient as opposed to just “different”.

Why is the double empathy problem important to Autistic people?

The double empathy problem allows us to demonstrate the fundamental power imbalance between Autistic and neurotypical individuals and groups. Autistic people’s position as a minority group results in our existence being pathologised and medicalised, while neurotypical embodiment is seen as something to be desired.

The double empathy problem highlights the exclusionary and oppressive nature of neuronormative thinking while highlighting the issues with cross-cultural and cross-neurotype communication and social reciprocity. Thus, rather than view Autistic people as anti-social, and deficient in communication and empathy, it would be more accurate to say that we have differences in these areas.

Why are Autistic people different?

Due to differences in brain functioning, Autistic people experience and process information differently. As a result, Autistic people utilise and understand language differently, resulting in the evolution of an Autistic culture and sociality (AuSociality). These fundamental differences in our use and understanding of language, sociality, and processing of information constitute a cultural divide that prevents neurotypical society from truly empathising with our experience.

Further Reading

Dr. Damian Milton- The Double Empathy Problem Ten Years On

Creating Autistic Suffering: The Self-Diagnosis Debate

This article was co-authored by David Gray-Hammond and Tanya Adkin

There are many other nuances to Autistic self-diagnosis debate considering colonialism, racism, misogyny, and transphobia (to name a few) that others with more lived experience would be better placed to highlight. This article is not the whole issue (links at the end). We seek to address some of the most obvious points within the confines of a blog post.

There is a long-standing debate around the validity of people who self-identify as Autistic without formal diagnosis. One of the main arguments we see against self-identification is “what if they get it wrong?”. We would respond with “how can it be wrong?”. Autism is an abstract concept, the diagnostic criteria is fundamentally flawed, based only on white western boys who are displaying trauma responses. Autism does not exist as a tangible entity. You can’t touch it, manipulate it, you can’t interact with it. What actually exists is Autistic people.

So, what if it is wrong?

Notwithstanding the above point that self-identification cannot actually be wrong, lets just pretend that it can be for the sake of this next section. What if somebody identifying as Autistic is in fact experiencing a different flavour of neurodivergence? The rate of co-occurrence between Autistic people and other neurodivergences, conceptualised as “mental health conditions” is ridiculously high (more on that here). Tanya and David often joke that we have never met a ‘ready-salted’ Autistic; that is to say, we have never met an Autistic person that comes in only one flavour, without co-occurring conditions. This means that statistically, Autistic people are more likely to be recognised with co-occurring mental health differences than the neurotypical population.

“It’s trendy to be Autistic”

People who make the argument that self-diagnosed individuals are following a trend fundamentally misunderstand the neurodiversity movement. The neurodiversity movement is born from the collective frustration and mistreatment of neurodivergent people. No one is identifying as Autistic for fun. We come to this understanding because we are desperate to find relief from a world that has systematically oppressed and harassed us. Another misunderstanding here is around what being neurotypical is. We have a false dichotomy of ND vs NT, but neurotypicality is a performance, not a neurocognitive style (Walker, 2021). It is an ability to fit in with the world neuronormative standards. To consider it another way, if you identify with the Autistic label, you almost definitely can’t perform neurotypicality at the very least.

What is the neurodiversity movement and how does it relate to self-identification?

The neurodiversity movement is, at it’s core, a social justice movement. Those who identify as neurodivergent are situating themselves within the social model of disability. It is a political stance, one that places the person in opposition to the medicalisation of human minds. It is a movement that exposes the flaws of our current capitalist and neoliberal culture in the west that seeks to pathologise anything that does not conform to an attitude of profit-driven, self-reliant, neurotypicality. When we tell people not to self-diagnose, or identify outside of diagnostic models, we are inadvertently bolstering the psychiatric industrial complex that serves to medicalise dissent from our current systems of oppression. Therefore, by opposing self-identification, we are policing peoples political expression, which is a product of privilege and frankly makes you a bit of an arsehole.

The validity of the autism diagnostic criteria

Problems with the diagnostic criteria are well documented, we don’t have space to list every single issue, but there is more to be found here. What should we do about identification? Does this mean that nobody should ever be identified as Autistic? Absolutely not. There is research specifically on the flaws within the diagnostic criteria, so what do we have as an alternative? This is where Autistic-led theory comes into it’s own.

Specifically, the double empathy problem (Milton, 2012). Research tells us that Autistic to Autistic communication is more reciprocal and of better quality than Autistic to non-Autistic communication (Crompton et al, 2020). Research also tells us that neurotypical people perceive Autistic people unfavourably (Mitchell, Sheppard, & Cassidy, 2021). Botha (2021) evidences Autistic community-connectedness as a buffer against minority stress. To bring these points together, if you communicate more effectively with other Autistic people, if you find that neurotypical people dislike you for no reason, and if you find being part of an Autistic community massively reduces the minority stress that you experience; the research suggests that these things are far more effective at identifying Autistic people than flawed diagnostic criteria from old white men who studied little white boys.

To conclude

So, next time someone tries to tell you they are Autistic, try believing them. We don’t need old, stale, and pale neurotypicals to validate our internal experience of the world, and give us permission to exist. We are more than capable of knowing ourselves. If it helps us live more authentically, and reduces the stress we experience, then we should not be policing that. To speak against self-diagnosis is to parade one’s own ignorance for all to see.

If you think you’re Autistic, welcome to the community, we hope you find your home here.

Further reading

Racism- https://journals.sagepub.com/doi/10.1177/13623613211043643

Gender-https://www.forbes.com/sites/anuradhavaranasi/2022/08/31/autism-diagnosis-has-a-gender-bias-problem/

Transphobia- https://www.theautismcoach.co.uk/blog/transphobia-and-autism

References

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Crompton, C. J., Sharp, M., Axbey, H., Fletcher-Watson, S., Flynn, E. G., & Ropar, D. (2020). Neurotype-matching, but not being autistic, influences self and observer ratings of interpersonal rapport. Frontiers in Psychology, 11, 2961.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.

Mitchell, P., Sheppard, E., & Cassidy, S. (2021). Autism and the double empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39(1), 1-18.

Walker, N. (2021). Neuroqueer Heresies: Notes on on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

BBC’s “Inside our Autistic Minds” documentary has some awful resources online

To put this in context, you can visit the Open University web page where these resources are housed here.

Many people are talking about the BBC’s latest documentary on autism and finding it refreshingly validating. However, the resources that have been put up online by co-producers at the Open University are exceedingly outdated and missing key advances in knowledge of Autistic experience. It is clear that while the documentary itself may be okay, those behind it have learnt very little about the reality of Autistic experience.

The first thing you need to know is that the interactive documents take an obvious deficit based approach. This is evident in the theories they promote and the language used throughout. You can tell a lot about organisations from the way they talk about marginalised communities, and the OU are marking themselves as unsafe and ignorant. Using neurodiversity-affirming language and up-to-date theory is the minimum expectation one can place on an institution that provides degree level training to people who will work with Autistic individuals.

Being more focused, the most obvious issue that stands out to me is the references to Baron-Cohen’s now debunked theory of mind claims. They reference the claim that we struggle to understand the minds of others and understand their feelings as different to ours. This is largely baseless and incredibly harmful. Quoting Baron-Cohen on matters of Autistic experience is like quoting Freud in modern psychology; he is a relic of the past and has not ages well.

I would next like to discuss their claims that Autistic people struggle to communicate and follow social conventions. Even newcomers in the field of Autistic experience become aware of The Double Empathy problem exceptionally quickly. Rather than positioning us as having a deficit in social reciprocity, this theory demonstrates that the issue is one of experience. Autistic people have different cultural experiences to that of non-Autistic people, resulting in difficulties with communication on both sides. Unfortunately, due to the power imbalance in our society Autistic people are labelled as having a deficit and required to conform to non-Autistic communication.

It is not okay that the Open University are upholding this power imbalance.

My final note is that they espouse the view that cognitive behavioural therapy is the gold standard for the treatment of anxiety. Autistic people have been reporting for some time now that due to the double empathy problem and a lack of understanding of Autistic culture and experiences, CBT is more of an exercise in gaslighting than a beneficial treatment for what is a very reasonable response to systemic oppression.

These issues highlight to me the short-sightedness of so-called professionals and academics. You can make all of the wonderful documentaries that you like. If the resources you are sharing are harmful, then your allyship is performative at best.

Society has a long way to go in order to treat Autistic people equitably, but a good first step that will benefit everyone is to consult Autistic voices from diverse backgrounds on Autistic matters. We are not the ones with a deficit. Society is.

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