The world of academia and knowledge-production is renowned for it’s disinterest in lived experience. While it is true that anecdotes are almost impossible to generalise in the statistical sense, the positioning of external observation by a meritocratic expert as being above that of the experience of the subject of observation represents an ethical dilemma that has plagued not only academia but also the people being observed for many years.
Autistic people are a classic example of a group that is often spoken about rather than spoken to. This is why we held an Autistic Mental Health Conference. Marilyn Charles writes in their essay Madness And Mysticism in the anthology The Entanglement Of Culture And Psychosis (Lambrecht & Lavis, 2026):
Knowing about is not the same as knowing
This is itself the basis of Milton’s Double Empathy Problem. Deficits in empathy, through this framing, can be seen as mutual experiential mismatch rather than deficits.
I, as an Autistic man, can not personally understand a non-Autistic man’s experience, and therefore can only “know about” non-Autistic experience and not “know” it. However, this is not because i lack empathy for the non-Autistic man in question, I can empathise quite well with other Autistic people. The non-Autistic man in question experiences the same in reverse.
It should be noted that the double empathy problem could succesfully be applied to any experiential difference. Professional to non-professional. Cis-gender man to woman or gender diverse person. White person to Black person. We can not know what we don’t experience. At best we can know about, which is perceptibly superficial at best.
So, why did we hold the Autistic Mental Health Conference? Autistic people are often victims of epistemic injustice. Our accounts of our experience are seen as invalid or untrustworthy. For me, it would seem that two things form the basis of this epistemic injustice, first would be Yergeau’s demi-rhetoricity; we are both too Autistic and not Autistic enough to have a trusted voice on autism. The second is that those who know about autism are gifted a meritocratic superiority over the people who know what it is to be Autistic.
The Autistic Mental Health Conference took a different approach, however. We platformed Autistic people who know Autistic experience. That doesn’t mean that we were able to encompass all Autistic experience. What it does mean is that we shifted the power balance away from those who know about autism towards those who know for three days, on an international platform.
This was important for more than just reasons of being Autistic. Autistic people are more likely to experience mental health concerns with some research suggesting a prevalence of 8 in 10 people in the Autistic population compared to 1 in 4 in the general population. Further to this, Autistic experiences of mental health and it’s associated happenings often depart from those of non-Autistic people.
This presents a nuance that a non-Autistic expert can know about, but only the Autistic person can truly know. Given the rates of negative experiences, amounting to significantly increased suicide risk, it is vital that we primarily platform the people who know over the people who know about.
It’s not that academic expertise does not have value, it’s that expertise in the absence of the context of lived experience is similar to learning to speak a language but never visiting the country where it is natively spoken.
The Autistic Mental Health Conference aimed to bring that Autistic lived experience, the culture that underlies that experience, to the forefront. It was a demonstration of the collective impact that Autistic people have when given the platform to voice their experiences and be heard. That is why we held this conference.
Here are some photos from the in-person day of the conference on August 15th 2026.
