Konrad Bleyer-Simon: You were diagnosed with autism at the age of 23. What changed in your life after this?

Jodie Hare: First and foremost, a diagnosis provided me with language that helped capture my experience – it started to feel easier to explain to the people in my life what it feels like to be me. This has been immensely helpful during periods of distress or when I feel overstimulated or need time to process things.  

Beyond that, I sought out autistic community, online and offline, which helped me meet other people who shared similar struggles or enjoyed similar things. It felt easier to accept the parts of my autism I find difficult after I could see them reflected in people I care about. I sought out support at university, in jobs, in therapy, wherever I needed it, and used this new language to explain what I find hardest. 

How did you feel at the time, and how was it different from the neuronormative experience?

I think this can be a tricky question to answer because just like anything else in life, my experience of autism will always differ in some ways from that of others. One way I’ve tried to describe how I felt socially is that it seemed like neurotypical people were on a dancefloor, all dancing with one another, hand in hand. I felt that there was something about the way I am as an autistic person that meant whilst I could get myself on the dancefloor, I could never get as close to other people; I couldn’t take anyone’s hand or dance with them and move in the same way as others; I couldn’t move in the same rhythm. It felt like there was a block between me and others, and I couldn’t get them to meet me where I was. These feelings haven’t necessarily gone away as I’ve gotten older – I just understand them better now.

In your book Autism is Not a Disease: The Politics of Neurodiversity, you recount how an employer started to speak to you as if you were a child after finding out that you were diagnosed with autism. Many neurotypical people don’t know how to behave when they are with neurodiverse people. What would be your advice to them?

I would tell them to lead with respect and compassion, the same way you would with any other person. Don’t make assumptions, ask respectful questions if you’re unsure, and allow people to set boundaries about what they do and don’t share.

Respect that people have communication differences but don’t infantilise. Always remain open to learning and doing things differently.

Can you briefly explain what neurodiversity is and why it makes sense to group together, among other things, ADHD, Down syndrome, Parkinson’s, and long-term mental health conditions? 

Neurodiversity is the understanding that the human race contains a large number of neurotypes and that a breadth of cognitive functioning is a natural part of biological variation. The political campaign that promotes this understanding rejects the pathology of these neurotypes, critiquing and combating the idea that there is a “normal” type of brain.

Neurodiversity is the understanding that the human race contains a large number of neurotypes.

Whilst the original research and campaign work framed autism at the heart of neurodiversity, the term has quite rightly expanded in an inclusive manner. Neurodiversity is now thought to include autism, ADHD, dyslexia, dyscalculia, dyspraxia, learning disabilities, acquired neurological conditions, Down syndrome, schizophrenia, dementia, Parkinson’s disease, and long-term mental health conditions (like bipolar disorder). 

You highlight that neurodiversity is not a disease. What would you consider it instead? Is it a disability? 

Yes, many neurodivergent conditions are understood to be disabilities. There is much about the experience of these conditions that can be disabling, particularly in our current world, which is largely inaccessible and hostile to those perceived to be different in some way. 

I think sometimes people think that in order to oppose the pathologisation of neurodivergence we must reject that it is disabling, but this is not correct. We can absolutely acknowledge that a condition like autism is a disability and that much of the current abuse and alienation that autistic people face is a result of wider ableism. Accepting autism as a natural variation in neurotype does not need to negate the fact that many autistic people find it inherently disabling. 

In your book, you discuss the gendered aspects of neurodiversity. For instance, before your diagnosis, you did not consider the possibility that you might be autistic, because the typical examples you had seen usually involved boys diagnosed early in life. Do you see improvements in this area?

I think in many cases, the increasing number of diagnoses is a result of attempts to fix diagnostic inequities. Many marginalised groups – whether they are discriminated against based on gender, race, or class – have been neglected by medical bodies, with little understanding of how neurodivergence might manifest differently in these populations, leading to underdiagnosis and misdiagnosis. Of course, factors like racism and ableism also affect a person’s access to adequate medical care.  

So yes, the increase in diagnoses shows there are improvements being made, even though it is currently a bit of a controversial topic. More conversations are being held about the neurodivergent experience, and we are beginning to unpack misconceptions about what autism and other types of neurodivergence can look like. However, the work is far from done, and it will require continued knowledge sharing, an open dialogue for different communities to have their voice heard, as well as continued attempts to unpick the biases that we see in medical spaces.  

There is also a lot of discussion these days about high-functioning autism, especially since Elon Musk publicly spoke about his Asperger’s diagnosis. Musk’s neurodiversity makes him a superhuman in the eyes of many people, but is this perception useful for the neurodiverse community? 

It is not at all helpful to autistic people to refer to Elon Musk as superhuman; in fact, I would go so far as to say it is potentially dangerous to do so. Using words such as “superhuman” in relation to autism can be linked to the idea of “aspie supremacy”, which is the belief that some autistic individuals are superior to others due to factors like the absence of intellectual disability and/or communication abilities.  

Such misconceptions create a hierarchy within the autistic community, promoting exclusion and marginalisation. This kind of behaviour promotes lateral ableism amongst neurodivergent people and is the opposite of what the neurodiversity movement is aiming for.  

The other example of a person whose neurodiversity was widely covered in the past years is Greta Thunberg. Again, her neurodiversity is often seen as the reason for her impactful activism. But once she started speaking out for justice in Palestine, she was quickly labelled antisemitic, or at least unable to grasp a complex situation. Does this show that neurodivergent people are only accepted if they do exactly as the mainstream expects them to think? 

Yes, I think quite often there is a thinly veiled layer of ableism that underlies critiques of neurodivergent people who are heavily involved in political life. It would not surprise me if there were people who believe Greta is naïve or unable to develop her own opinions because of being autistic.

Quite often there is a thinly veiled layer of ableism that underlies critiques of neurodivergent people heavily involved in political life.

What do you think of the current approach of scientific research and the state of the scientific discourse on neurodiversity? Do they sufficiently consider the interests of the neurodiverse community and give agency to its members? 

This is an area that is improving, but very slowly. There are still vast amounts of money being pumped into studies that seek to identify things like an “autism gene” or discover a cure for types of neurodivergence. Many of these studies can be linked back to eugenic aims.

Whilst there is an increasing number of studies where neurodivergent people are invited to be co-researchers and lead participants, there is still a huge gap between the research being done and the research the community would like to see. Many of the people I’ve spoken to would like to see research that focuses on quality of life, on how to build communities that adequately support neurodivergent people, and on how we can ensure disabled people have access to lives that are as joyous and meaningful as anyone else’s.  

Can you give some examples of good research done in the field? Whose works or what theories would need more attention?

I would recommend people have a look into the work of Damian Milton, particularly the research around the Double Empathy Theory; Nick Walker and her work on the Pathology Paradigm and Neuroqueer theory; and Robert Chapman, especially their work around neurodiversity theory as a field of philosophical analysis and their research on politicising neurodiversity. In addition, I’d also recommend Devon Price’s work.
As more people are diagnosed as neurodivergent, there are speculations that individuals who function in a neuronormative way want to get a diagnosis just because it is “popular”. Do you think this is the case, and if so, should it be considered a problem? 

I think there’s a lot of scaremongering in this area. In many places, it’s extremely hard to get a diagnosis, and people are stuck for years on waiting lists. So, I don’t believe anyone enduring this much trouble would be doing so with the hope of becoming part of a “trend”. I simply believe the influx of knowledge around neurodiversity is allowing us to recognise how much of the world we’ve built is inaccessible to a large section of the population.  

An increase in diagnoses should do nothing other than signal to governments that we need better provisions for disabled people. It should suggest that we need better funding and systems of care, and that we should begin reorganising society in a way that is more accessible for all. To me, that would not be a bad thing, given how desperately we need provisions.  

Can you mention some successful examples within the political movement for the rights of neurodiverse people?

The neurodiversity movement has achieved significant milestones as a political campaign in recent years. For instance, the movement has managed to influence hiring and workplace accommodation policies. It has also orchestrated boycotts, such as that against the Spectrum 10K study [a cancelled high-profile study that aimed to collect DNA from autistic people], the #StopTheShock campaign, and the proposal to ban electrical stimulation devices for self-injurious or aggressive behaviour (though this fight continues). Moreover, the movement has led to calls to shift research priorities from cure to support.

How is the neurodiversity movement organised?

I wouldn’t say that there is any kind of strict organisation in the movement, nor any people I would identify as “leaders”. Still, there are certainly people whose work is often seen as foundational, such as Jim Sinclair and xyr seminal essay Don’t Mourn for Us.

There are grassroots organisations whose work supports the politics behind the neurodiversity movement, such as Project LETS and the Autistic Self Advocacy Network. However, much of the work being done is very ad-hoc and informed by the work of individual advocates who come together to combat certain issues. I do believe this is slowly changing, though, as more organisations and groups are formed.

To what extent do you see neurodiversity represented in today’s mainstream politics? 

I don’t see it very much, to be honest. There are some organisations like Neurodivergent Labour, which have produced their own manifesto that aligns with their politics, but I wouldn’t say that this is mainstream. In the UK, the proposal for further cuts to disability benefits has sparked a lot of conversation around what it’s like to be neurodivergent and disabled in the country, but again, this topic is not necessarily of interest to a mainstream audience. The reality is that much of the general public is uninterested in the lives of disabled people, and this is of course a result of the ableism that dominates so much of our society.

Much of the general public is uninterested in the lives of disabled people, and this is a result of the ableism that dominates so much of our society.

Is supporting the demands of the neurodiverse community a “left-wing” topic?

That is certainly true. Supporting neurodivergent people means reconsidering access to healthcare and the funding of community care, creating a robust welfare system that adequately supports disabled people and the extra costs they face, improved accessibility in both public and private spaces, a restructuring and reprioritisation of the education system to ensure it is inclusive for all – the list goes on. Neurodivergent people are impacted by all the political issues that we discuss in left-wing spaces, and sometimes to an increased degree because of ableism and the effects of wider discrimination.

How can Greens and other progressives advance the case of the neurodivergent community? 

I think it requires listening to the community and fighting for the work and policies that would most benefit them, as well as supporting practices that emerge from grassroots neurodiversity advocacy. 

This work may be related to disability benefits, funding for disability services, addressing homelessness amongst neurodivergent people by providing secure housing, supporting peer-led support networks that place neurodivergent people front and centre. And finally, always focusing on cross-movement solidarity to ensure we consider the many intersections that contribute to a person’s experience of neurodiversity and disability.