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Autism “cure” culture and normative violence

TRIGGER WARNING: This article contains detailed discussion of harmful “cures”. It also mentions ABA, MMS, Chelation, and has in depth discussion around normative society and the murder of Autistic people.

For as long as I have been an advocate, many of my fellow Autistics have spoken out against cure culture. From Applied Behavioural Analysis (ABA) to Miracle Mineral Solution (MMS), there are myriad “treatments” that claim to purge the autism from autistic people. I could speak at length about the direct harm that these quack interventions inflict, but there is a deeper level of conversation to be had.

We are engaged, at present, in a culture war. On the one hand, we have Autistic culture which teaches us to be neurologically queer in every sense of the words. Be ourselves, connect with the self and express it in a way that honors our neurocognitice style. On the other hand, is cure culture.

Cure culture teaches us that who we are is broken, deficient, unrelentingly burdensome. Curists would have you believe that our lives are empty, broken, that we are trapped in a living death. Alive but somehow non-existent. The discourse around autism “cures” is dominated by non-autistic people who believe they are performing acts of mercy by pouring bleach solutions down our throats, and chelation drugs into our veins.

All of these things are a form of violence against a minority group that simply wants to live in peace. A minority group that intersects with many other oppressed demographics.

This is why Autistics get angry, this is why our lives revolve around our Autistic identity. Not only do we have to be Autistic in a world that desires normativity, we have to justify why we shouldn’t be tortured and murdered by people that are often (incorrectly) described as “well-meaning”. We constantly have to justify our existence. We are begging to be allowed to live while the world at large seeks to destroy us.

And yes, my Autistic self is defined by that which they seek to remove. Remove the autism, and you remove the person. Autism doesn’t even exist, only the Autistic-self exists. I am Autistic, not a person with a fucking carry-on bag where I store my quirks.

Do you want to know why pretty much every Autistic person you meet is at some level of burnout? It’s because we are dealing with this bullshit every second, of every minute. Every hour, of every day. By their nature, our lives require us to educate people on why we should be allowed to carry on existing. Have you tried to every account while teaching literally everyone you meet why being Autistic is not something to be grieved and/or corrected? It’s exhausting.

This is the culture war that we are fighting. We have no choice but to join the frontlines. We have to raise our voices above those who would speak over us.

After all, isn’t the whole point to leave a better world for our progeny?

More on Zeno’s Paradoxes and the issues with Autistic to non-Autistic communication

As you may have noticed from my most recent blog post, I am somewhat down a rabbit hole at the moment. In my previous article I discussed Zeno’s paradox of plurality and how it applies to the dehumanisation of Autistic people and the double empathy problem.

Today I would like to consider another of Zeno’s paradoxes and how it applies to the double empathy problem.

This particular paradox was known as the Dichotomy Paradox. Essentially, it explains that when travelling from point A to point B, one must first travel to the halfway point between the two. To then travel from that point to the destination, you must travel half way again. This continues infinitely when travelling towards a fixed destination and thus Zeno argued that you can never reach point B.

When considering communication across different neurocognitive styles, one must also consider what the goal is. If we presume that the goal is “successful communication” then the double empathy problem tells us that this is very difficult due to the different styles of communication. Despite this, Autistic people are always expected to be the ones to put the emotional labour into communicating. This has been discussed by Rachel Cullen, a recording of a livestream with Aucademy featuring them can be found here and here).

We then encounter the dichotomy paradox. Neurotypicals remain a fixed point in the goal of successful communication, while we as Autistics are constantly expected to move towards the goal by accommodating their preferred communication styles. It is as if we are constantly reaching the halfway point, and never reaching our destination. No matter how well we accommodate neurotypical preferences, we are caught in an infinite regression of distance, not achieving the aim.

This to me, highlights the deeper issue of dehumanisation and objectification of Autistics. Neurotypicals (perhaps subconsciously, sometimes consciously) consider themselves the pinnacle of humanity, a goal that all should be striving for. We know from the existence of the various compliance based behavioural interventions, that Neurotypicals do believe this in many cases. Evidenced by the fact that it is considered “gold-standard” to teach Autistic people to hide their Autistic nature.

As Dr. Monique Botha mentioned in their recent seminar, there is a reason why researchers and professionals insist on person-first language. “I want to eradicate autism” sounds much less like genocide than “I want to eradicate Autistic people”. However, both of those statements mean the same thing. This is justified because whether or not they overtly see it, neurologically queer behaviour and experience is seen as non-human. Remi Yergeau argued this dehumanisation was due (at least in part) to a perceived lack of rhetoricity in their book Authoring Autism.

Autistic people are viewed as husks, mindlessly performing nothing, controlled by an abstract spectre called autism. This then is perhaps why so many neurotypical people insist on person-first language, and ignore our preference of identity -first language. Why would they take a step towards the all consuming spectre? Surely it is better to leave such a thing trapped in that infinite journey towards a goal that is never to be reached.

This, then, is the appeal of neuroqueering to me. When I embrace my neuroqueer self, I no longer have to be trapped in the infinite journey towards performative neurotypicality. I escape the dichotomy paradox by abandoning societal expectations, and being true to myself. True to what nature intended for me. I am Autistic, I am divergent, and that divergence is a thing of beauty.

We need to raise up our fellow Autistics, high above the dichotomy of neurotypicality and neurodivergence. We need to embrace a world in which these words are redundant in meaning because no one group has the power to oppress another; and when our fellow Autistics are lost in the dark, we need to shine our own light, and guide them back to the daylight.

Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

Untitled poetry regarding S10k

Written anonymously by a friend

On the 24th august an announcement was made
Alarm bells rang as a friend was disdained

On mainstream media on a pedastool
Research was announced treating us like we are fools

Processing began…. Numb, shutdown, uncertainty
Then came the realisation, this was aimed at me

A direct insult, a direct threat,
to me, my children and those I respect

Anger and tears, meltdowns took over
Tears in the car, crying over and over

I think of my children so innocent and pure. We have to protect then… keep the scientist from the door

Autistic communities are loyal, fierce and strong

We will keep fighting, you won’t silence our song

Dystopia: A story of “Autism Research”

Since autism first entered the zeitgeist, and probably before, research into it has focused largely on what causes it. The reason for this is clear to pretty much the entire autistic community.

Rather than embrace the existence of a neurominority, and validating our right to exist, science largely wants to eradicate us.

Now with the looming spectre of Spectrum 10k (S10k), never has it been more obvious that our wellbeing and our needs as Autistics do not matter to the Autism Research “Industrial Complex”.

Looking at our genetics is what attracts the big money, and (as in the case of S10k) they won’t guarantee what will be done with that data.

The general population worships the genetic research being done, believing only that they are helping us. While we, the neurominority, beg them to help us improve our quality of life, our wellbeing.

While we beg for scraps of validation and recognition of our needs, groups like the ARC in Cambridge ignore us.

Certainly, their is a premise for a dystopian fiction novel in this scenario, that would require little more than an accurate glance into the future. One need not embellish the truth to tell this tale in a truly terrifying fashion.

Perhaps, then, you can understand why the Autistic community is suffering so greatly right now. I am watching my fellow autistic advocates burnout and shutdown in the wake of yet more research that cares not about the lives of our neurokin.

I will not stand idle while this community is decimated. This community saved my life, I am certain it saved countless others. Now is the time to unite, and shift the scientific paradigm to one that listens to the minorities it claims to act for.

I will not be erased, and I will not allow my fellow Autistics to be erased either.

I believe a future without Autistic people is a bleak one. A world without diversity is a world without a soul.

Diversity is at the heart of any healthy society, civilisations that fear diversity are known to crumble. S10k goes beyond the very valid concerns of the Autistic community, it is a symptom of a world that fears it’s own diversity.

We must root out the ableism endemic to our communities, and the world at large.

The time to stand up and be heard is now.

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