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.