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Commentary on “Why requiring Autistic people to be diagnosed is a betrayal of the Neurodiversity movementWhy requiring Autistic people to be diagnosed is a betrayal of the Neurodiversity movement”

For this commentary to make sense, it may be worth reading my other recent articles on the liminal nature of the neurodiversity movement and the reality of Autopia. My recent articles have all come from my recent preoccupation with creating a utopian neurocosmopolitan society, and I have used my writing to try and imagine what such a world might look like for Autistics.

When I wrote the article that is the subject of this commentary, I was not intending to denounce diagnosis, at least not in the world we currently live in. What I was trying to do was highlight how forcing people through an ableist and bigoted diagnostic system in order to gain access to support, further pathologises the Autistic experience.

Like many supporters of the neurodiversity movement, I take offence to the medicalisation of my neurotype. I feel it is inherently wrong to treat autism as a pathology. I do not believe that any Autistic people require fixing or curing.

My reasons for this are complicated, but in a nutshell; I believe that our current society judges us on our ability to create financial value and drive up profits, when we can not fit into that requirement, society deems us as having deficits and views those deficits as reducing our value.

When we can not meet our cultures standards, we are forced into the medical system, to prove our neurotype in order to attain the support that we need to survive.

Not only are we a Autistics forced to do this, but our family and carers are required to jump through the metaphorical hoops, often with little to no support. They face institutional violence and parent/carer blame the whole way.

The article I wrote was me dreaming of a society where everyone is treated as equal, no one is considered “standard” or “typical”. Things like universal basic income exist, social care has been reformed. Autistic people are no longer treated as broken or defective. We are not forced to prove we need support because the support is freely available to whoever needs it.

It was utopian thinking, and never did I intend to make people feel as if they were doing the wrong thing, or that I believe diagnosis is bad on current society.

I hope that with this commentary, people can further understand where my line of thinking came from, and understand the point I was trying to make.

Diagnosis is necessary on our world at the moment, but can we not dream of a better world? Where all are equal and supported. Where no one has to feel broken.

Autopia: The reality of accommodating Autistics

At Aucademy we have long talked about our vision of a perfect Autistic utopia, affectionately called “Autopia”. The vision is of a collective living scenario, away from the pressures of a world that puts neuronormative standards and culturally accepted neurotypicality, ahead of any neurocognitive type that does not fit into its restrictive box. We often imagine a world with sensory safe spaces, collaborative living arrangements, and a distinct lack of hierachy.

Such a world would be brilliant, and beautiful. However, the reality of creating a world where Autistics can live in peace and comfort as their authentic selves is more complicated.

As discussed in a previous article, we are at a transitional point for the world. The neurodiversity movement fights every day to ensure equitable and fair treatment of all neurodivergent people, but we are still some way off from a world in which no one is given privilege, and all can access the world comfortably.

What would such a world look like?

The world we wish to create is not as simple as safe spaces and collaborative living. It first must do away with the pathology paradigm. Currently, neurodivergence is treated as a medical issue, with any associated disability often being viewed through the lens of the medical model of disability. Converse to this we have the social model of disability.

Our first steps towards Autopia require us to understand the ramifications of the social model. Under this model, disability can be considered to be the result of oppression. Rather than arising from a medical deficit within the person, the social model suggests that we are disabled by a society that fails to give us equal access to the environment. Thus, this failure can be considered a form of oppression. In some cases the oppression is a direct thing, with those responsible intentionally refusing access to disabled people, in other cases the oppression is more indirect, caused by a lack of understanding that inadvertently perpetuates the oppression of the disabled person.

Ableism is also another consideration. Once society has effectively oppressed and disabled a person, it then discriminates against them. Many disabled people are forced out of the work force by such ableism, forced to survive off of whatever money their government decides is appropriate (often with little care as to whether or not that money is enough to survive on). People are judged by societies standard of what a disabled person should look like, and what they are capable of, with little interest in what the disabled person has to say about their experience.

Understanding the ramifications of the social model, and the ableism that follows societies oppression of those who do not fit into culturally accepted standards, allows us to start seeing the pathology paradigm that has kept the neurodivergent on a lower rung of the ladder for quite some time.

This is where the neurodiversity movement comes in, and where an understanding of the neurodiversity paradigm becomes paramount.

To create Autopia, we must do away with cultural neuronormativity, and accept that human minds are diverse and beautiful. We must understand that no single neurocognitive style is superior to another. Ultimately, we must create a world where words like neurotypical and neurodivergent become irrelevant. This bold new world would not need such words, because no one is considered “normal” or “typical”, and no one is considered “different” or “atypical”. It is a world in which we all simply co-exist. No one has privilege over another. The world and society at large are accessible to all.

Unfortuantely, such a world is quite some time away. There is a great deal of work to be done to achieve it. The current world we live in traumatises Autistic and otherwise neurodivergent people on a daily basis. For more reading on how society harms Autistics, please see the Creating Autistic Suffering series housed on this blog, the series is authored by myself and Tanya Adkin.

To achieve Autopia, we must challenge our beliefs and thoughts. Society has done a good job of forcing the pathology paradigm on us. Now is the time to unlearn those lessons.

Why requiring Autistic people to be diagnosed is a betrayal of the Neurodiversity movement

It has long been accepted that diagnosis is a privilege that many are not afforded. What is not discussed is how diagnosis itself feeds into the pathology paradigm that has surrounded Autistic people since Autism was first conceptualised.

Requiring that a person be diagnosed Autistic is in and of itself a pathologisation of that neurocognitive-style.

One no longer expects a homosexual to be diagnosed with a disorder or condition, and yet we strive to be diagnosed as Autistic. While I recognise the privilege that having a diagnosis has given me, and I admit that my diagnostic paperwork saying “condition” instead of “disorder” filled me with joy; it has taken me some time to realise that my need to be diagnosed was in fact a perpetuation of medical models and pathologisation.

Being Autistic is an identity based on a specific neurology. It is not inherently good or bad. There is nothing to be fixed or cured, so why force people to acquire a diagnosis?

If a person largely identifies with the core experiences of being Autistic, then why should we deny them the right to identify as who they are? Should we not have accepted by now, in the 21st century, that neurodiversity is a natural phenomenon, and not a collection ailments requiring intervention.

Of course, a move away from diagnostic approaches would undermine what I would refer to as “the autism industrial complex” which largely consists of behavioural therapies and quack biomedical solutions, sold as the only way to separate your neurotypical child from the autism that has infected them.

Indeed, when one considers all the harm that the pathology paradigm has done, it seems to me that a world where being Autistic requires a medical diagnosis is not one designed in any way to accommodate Autistic people.

Should the neurodiversity movement wish to achieve its aims of acceptance and equitable treatment for all neurotypes, then we must strive to move away from all medicalisation of the natural diversity of minds. Until this is done, the neurodiversity movement can not succeed.

Neuroprovincialism, neurocosmopolitanism, and the liminal nature of the neurodiversity movement

Before I start, I highly recommend reading Dr. Nick Walker’s book Neuroqueer Heresies alongside this blog article. In particular, the chapter on Neurocosmopolitanism. It has heavily inspired this piece, and it would not exist without it.

Liminality is essentially the point of transition between two states. If one were to walk from the living room to the hallway, the doorway would represent the liminal point between the two rooms.

The neurodiversity movement then, can be considered the liminal point between neuroprovincialism and neurocosmopolitanism.

Prior to the neurodiversity movement’s creation, the world can be considered largely to have fallen under provincialism. There is no equity, cultural neuronormativity was the standard by which everyone was measured, all that fell outside of that standard was considered deviant, or broken. The pathology paradigm ruled our viewpoint. It was a narrow-minded world lacking the sophistication of an equitable society.

The future that the neurodoversity movement ultimately works towards, is what can be considered a neurocosmopolitan society. In such a society, no single neurological identity is considered standard. Terms like “neurotypical” and “neurodivergent” cease to be relevant, because the world recognises and actively celebrates the diversity of minds. We are still a long way from that future, but change is happening.

Thus, the neurodiversity movement can be considered the liminal point between the two. It serves as a doorway between two different worlds, one in which autistic and otherwise neurodivergent people are pathologised, oppressed, and hated, and another where we are treated as equals, seen as a fact of life, and not something to be fixed or eradicated.

When we consider liminality, doorways between places, we have to consider whether that doorway is suitable for all people to use.

Some will choose simply not to pass through the liminal space. Many of us are terrified of the unknown, and stay with what is familiar, no matter how detrimental. Some will leap forth, embracing a new state of existence. But what of those for whom the door is not designed?

It is known that the neurodiversity movement still has work to be done when it comes to fully including particular minority groups. Often non-speaking members of the movement find themselves talked over, although many are working to reduce that. BIPoC individuals have long been the victims of provincialist societies racism and oppression, and sadly such prejudice and bigotry can still be found in various movements for societal change.

Simply put, it is vital for us to ensure that the doorway can accommodate all who wish to pass through. If the neurodiversity movement can not serve as an appropriate liminal space for all, then a neurocosmopolitan society will be impossible to achieve.

Each of us contains inherent prejudice, passed down from the old society. If we wish to move through this liminal place, and emerge into the light of a new world for all, we must dismantle the thinking of yesteryear.

Dismantle the egotistical side of ourselves that centres all conversation around the ‘me’, and extend our viewpoint and attention to include every voice. We all have something to say, but we don’t all have the privilege of a platform.

The first step to building any doorway, is to design one that all may use should they wish.

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