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.