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Creating Autistic Suffering: Autistic safety and neurodivergence competency

This article was co-authored by David Gray-Hammond and Tanya Adkin

The business of autism is littered with buzzwords and catchall phrases and strategies. Largely dictated by non-Autistic people. Perhaps one of the most common terms you will encounter as an Autistic person or parent/carer to an Autistic person is “Best Practice” or “Framework”. Both of these terms have an intrinsic relationship with each other, with best practice being dictated by frameworks, which then (in a circular leap of logic) is used to justify frameworks again.

Many things that have previously been defined as successful or best practice have later proven to be at best unsuccessful, and at worse, harmful. There is a seeming acceptance that Autistic people exist in homogeneity. Meaning we are often subjected to one-size-fits-all approaches in the form of best practice (strategies, gold standards, behaviour management).

“When you’ve met one Autistic person, you’ve met one Autistic person”

This is one of the mantra’s of the Autistic community, and underlies our reasoning for the rallying cry of “nothing about us without us”. This is completely incompatible with any framework or practice that assumes the position of a general approach.

We also have to consider the issue of who is implementing best practice strategies and frameworks. You could create the most neurodiversity-affirming strategy that could ever be created. If that strategy is then delivered by someone who is medical model aligned, and ableist, it has very real potential to be harmful.

Autism + Environment = Outcome

Environment is not just the physical environment, it also encompasses the attitudes and people that we are surrounded with.

People fear difference, they fear that which they do not understand. From that fear comes poor attitudes, vicitimisation, and bullying. This is true of the experience of any marginalised group. It’s the way human beings operate in our existing culture. It is the culmination of groupthink upheld within the concept of survival-of-the-fittest. There is an assumption that difference means liability and weakness. Education is the only antidote to this.

Our experience is that in order to successfully support an Autistic person you need two things;

  1. Safety
  2. Competency

Let’s consider what we mean by these two words.

Safety

Autistic people rarely feel safe. As we have discussed in previous CAS articles, the world is, by design, traumatic and unsafe for Autistic people for a myriad of reasons. Therefore, key to supporting Autistic individuals is safety; both relational and within the individual. Many dysregulated Autistic people do not feel safe, and struggle to self-regulate. They need a safe, regulated ally to co-regulate with. This is why the relationship and relational safety is so very important. As is ensuring the wider environment is safe, to optimise the feeling of personal safety.

Beardon (2023) talks about the concept of Autistic safety in much more depth than we can explore here.

Competency

Competency can not exist without safety, and safety can not exist without competency. In the context of Autistic safety, one must have neurodivergence competency. A person having knowledge of their own experience and having the understanding and language to advocate for themselves increases safety. This can not be taught without competency.

We have previously spoken about fear and lack of understanding creating poor attitudes and the victimisation of Autistic people. Therefore, the only way to successfully combat the fear that drives these attitudes is through understanding. This understanding needs to take a deeper form than that of basic neurodiversity-affirming “strategies”.

How can anybody be expected to successfully support an Autistic person without a comprehensive, non-pathologising understanding of Autistic neurology and experience? Without this foundation what you get is neuronormativity and subsequent trauma.

What might neurodivergence competency look like?

We are not the font of all knowledge. Nor do we presume to impose our experience and opinions on the wider community (reading is optional). We can only speak to our own experiences.

Feel free to add any suggestions that you may have, or spark a discussion about this.

Here are some of the things we think might be useful;

  1. Awareness of positionality– It is important that a person have the self-awareness to know of their relationship to the topic and person, and be able to challenge their own internal biases.
  2. Understanding of neurodivergent culture– Use of identity-first language, preference for social models of disability rather than the medical model.
  3. Awareness of the harms of the pathology paradigm– Understanding the impact of different paradigms and why the neurodiversity paradigm is vital to empowering neurodivergent people.
  4. Knowledge of historical autism theory– A requirement to understand the history that has contributed to discourse around autism and neurodivergence in general.
  5. Practical knowledge of Autistic autism theory– Monotropism, double empathy, burnout, masking, etc
  6. Comprehensive understanding of the effects of intersectionality– One size does not fit all. We are individuals living at multiple intersections of experience.
  7. Practical and working knowledge of Autistic sensory experience– Understanding issues surrounding interoception and alexithymia.
  8. Co-occuring conditions– We rarely come in one flavour.
  9. Understanding of power imbalances– Understanding how the different power structures in people’s lives impact upon their wellbeing.

This is a non-exhaustive list. Actually, it is way smaller than the current AET good autism practice guidance.

Is it time that Autistic people were given the space and platform through which to create their own “best practice”? Or have we already done that, and it is embedded into Autistic culture? Maybe someone should write it down, or would it just be considered a case of cultural competence?

For further discussions like this, check out David’s Substack and Discord.

World Autism Day 2023: A reflection on the work still to do

The date is April 2nd, 2023. This means another World Autism Day (part of the wider Autism Acceptance Month) has arrived, and as the month progresses, we will, as a community, share in the triumphs and comfort one another in our losses.

This month can be a bitter tasting pill for many, with World Autism Day representing a day that should be ours. Sadly, it is often claimed by those whose agenda does not align with the very Autistic people that they claim to support. Today, and all of April, for that matter, serves to remind me of the Autistic people who have left us. The ones for whom this world was simply too cruel to withstand. I often see positivity that change is slowly happening; the change isn’t fast enough, there are no acceptable losses on the road to liberation. Every Autistic person we lose is a scar on our history, and an indictment of the world we live in.

Yes, perhaps the days of asylums is coming to an end, but what of the countless Autistic people here in the UK who are locked away and abused in psychiatric institutions? Can we truly say that the asylums are gone when one can be placed into carcerative care, simply for being Autistic and in distress?

What of the CAMHS crisis that has been ongoing in perpetuity? Can we really say that Autistic people are liberated while our children are being denied their identities and/or turned away from help for being Autistic? Every single day, Autistic people are fighting to exist. While the nature of our fight might be becoming less overtly life-threatening, we still have to recognise that our dramatically reduced life expectancy lists filicide and suicide as to of the biggest factors.

Yes, the world is changing, but it’s not changing fast enough.

Speak of normativity and structural oppression to the average person, and you will be met with blank stares or even gaslighting. To create a truly inclusive world we have to start from the bottom up. We have to consider the foundations that our world’s power structures are built upon. You don’t destabilise oppressive regimes from the top, you foment revolution amongst the people it rests upon.

If I can ask one thing of Autistic people this World Autism Day, through out Autism Acceptance Month, and moving into the future; be resolute in your commitment to shifting the views of the masses.

While change at government and legislative level is vital, it ultimately will fail if we do not change the hearts and minds of our similarly downtrodden friends, family, colleagues, and loved ones. We have to recognise that we are all sharing in oppression and that we have the collective force to cut free from the chains of normativity. We can, together, create a neurocosmopolitan society. We can lay a new foundation for those that come after us to build upon.

I am Autistic, I am proud, and I refuse to accept the way that things are.

Autism, disability, accommodations, and the status quo

Let me start this piece with a massive shout out to Lyric Holmans (Neurodivergent Rebel). Their recent livestream with Aucademy provided a huge deal of inspiration for me to write this, and I can’t go ahead without giving credit where credit is due.

Autism. Is it a disability, or not? That question will have different answers depending on who you ask. The prevailing opinion is that, yes, it is a disability, but under the social model of disability. To define that in a nutshell, autism is a disability because society is not designed for autistic people.

So, why make accommodations?

By adapting the environment to be more comfortable for autistic people, autistic people feel less disabled. Our world is full of sensory bombardment, requirements for neurotypical time management skills, and things that need our attention. All of these things can be distressing to autistic people, and it is when an autistic person is distressed that they are at their most disabled.

But Lyric also illustrated a flip side to this. When we make the environment more comfortable for neurodivergent people, we generally make it more comfortable for everyone. When people in charge respond with “But everyone wants that!”, that’s the point. Make the environment comfortable for EVERYONE. No one group should get special treatment, neurotypical or neurodivergent.

This also feeds into “cure” culture. I am yet to see a “cure” or behavioural intervention that doesn’t increase an autistic person’s distress. However, making accommodations, in general, reduces distress. Lyric Spoke of square pegs being forced into round holes, why not adapt the hole to fit any shape of peg?

It is the status quo in society that makes autism a disability. That’s literally what the social model tells us. What we need is to rethink society to be inclusive of everyone, not just to have special designated spaces where autistic and otherwise neurodivergent individuals can feel comfortable. This applies to Autistics of any age.

Until we liberate society from its neuronormative approach to inclusion, many autistic people will continue to be disabled. It’s on all of us to create a world where anyone, regardless of disability, can enjoy a society free of ableism and truly inclusive of all.

Accepting Autistics and other radical notions

It’s April, so you know it’s about to get real bloody frustrating trying to be heard over the like of Autism Speaks and other problematic groups claiming to represent “people with autism”.

When it comes to the notorious Autism Speaks there is one thing in particular that we should facing up to. Cure culture.

Cure culture is the ultimate way to show autistic people that you do not accept them for who they are. It starts with better known interventions, such as ABA, and spreads all the way to dangerous quack cures such as Miracle Mineral Solution/Chlorine Dioxide abuse.

Why does society want to cure us? Because it values the status quo over the beauty of human diversity. Unless your quirkiness somehow makes you economically valuable, the world seeks to stamp it out. It’s the ultimate way that capitalistic society harms autistic people. Some people will literally murder autistic people rather than embrace our neurodiversity.

Let me lay it out for you. There is no cure for autism. Taking autism out of the person is like taking the engine out of a car. The car no longer functions as a car. Being autistic is our physical wiring, without it, we would not be who we are.

This is what upsets me so much when I see parents and carers seeking to “cure” their autistic children and loved ones. Yes, we face daily struggles, but how much do you have to resent your child in order to want to change them into a completely different person?

That’s what it comes down to. Resentment. The world resents us for existing. It resents us because we demand equal rights, and the world has to put in work to meet those demands. The old rules of “more rights for me, does not mean less for you” has never rung more true.

If I could stamp out one thing this April, it would be cure culture.

This April, please listen to and amplify #ActuallyAutistic voices. Be an ally to the autistic community.

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