Creating Autistic Suffering: Professionals, why don’t they know?

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

Trigger Warning: Injustice, professionals, Autistic suffering, mentions of theory of mind, weak central coherence, and older autism theory.

We often sit and have conversations about our work. We never cease to be astounded at the lack of basic autism knowledge out in the world. We’re not talking about Theory of Mind or Weak Central Coherence.

You would think after so many years in advocacy we would have become desensitised to it by now. Unfortunately, every day we attend social care meetings, school meetings, meetings with clinical commissioning groups, etc, who are genuinely perplexed by what they call ‘complex presentations’. Let us make it clear, we are not talking about Joe Bloggs off the street, we are talking about those that are considered highly qualified, and are responsible for Autistic peoples wellbeing in one way or another.

This raises the fundamental question, why are these people lacking such basic knowledge as monotropism and double empathy? We are literally talking about consultant doctors, social workers, departmental heads. People with a great deal of power in the lives of their Autistic patients/clients. Yet, whenever we mention the aforementioned theories, or neuroqueer theory, or burnout, masking, shutdown, we are met with blank stares and sometimes even derision. We can never figure out if they think we have come from a different planet or reinvented the wheel.

We take these theories as basic knowledge, however, for the vast majority of ‘autism professionals’ these are radical notions on the fringe of their world. One might ask the question as to why this is, the answer, sadly, is that the system within which they operate is not fit for purpose.

We don’t consider what we do to be ground-breaking. We can never figure out if we are respected or disregarded as being fringe radicals. Some professionals have full-blown identity crises when they encounter Autistic-led theory (yes, there have been tears).

Let us consider the system within which these professionals exist. The external part of the system, which one might consider the world of every day life, is a world of normative violence against those who diverge from the status quo. I’d like to think that no-one enters caring professions to inflict harm on purpose, unfortunately we know this can be the case sometimes. There will always be those within the system who operate with an aggressive disregard for all but their own ego and wellbeing.

Thankfully, we would like to think that the vast majority do not share this overt lack of empathy, and instead inflict harm through a lack of knowledge, these are the people that we can help and work with.

We need to first consider why they have these gaps in their knowledge.

We find this absolutely bewildering, considering the information is readily available from a wide variety of sources. Despite well over a decade of neurodiversity-informed work into Autistic experience, this work has not made it into standard training packages. While we don’t find these theories particularly difficult to understand, it is important to note that we as Autistic people have raging imposter syndrome, and are constantly encouraged to underestimate our own level of expertise and how we are perceived by others in the autism field. So maybe it is complex?

Considering the advent of the internet, and the ability to have an academic library in your phone, or even if you don’t have access to that, there are organisations such as Aucademy (shameless plug) that provide much of this education for free. For us it seems to boil down to three main reasons, but of course as with everything, it’s intrinsically linked and clustered with a whole host of other stuff that creates Autistic suffering.

The first, of course, is the money.

With the recent news of the national autism strategy, and the governments promised investment into this area, it seems that people are very aware of the knowledge gaps and financial issues. Our government in the UK has promised £74.88 million as part of their new policy named “The national strategy for autistic children, young people and adults: 2021 to 2026” (Department for Health and Social Care & Department for Education, 2021), while this could be considered a significant investment, recent figures available indicate that there are over 962,000 people working full time, in state schools in England (Office for National Statistics, 2022), this is exclusive of local authority employees that work directly with children and young people or NHS staff, even if this entire budget was invested in training alone the per head figure would be an offensively small donation at best, with not enough investment to even consider the costs of a trainer, resources, continual professional development, and the time it takes to train people. We could consider it a step in the right direction, we certainly won’t say no to it, but it absolutely does not solve the current crises that the system is facing regarding the care and support of Autistic people.

To summarise, it’s probably a lot cheaper to use the outdated training and save the budget, than it is to pay actual Autistic professionals to teach the new theory.

The second point to consider is the issue of who is providing the training. Who has the knowledge base required to actually train the professionals? The current system seems to operate on the model of ‘the one-eyed king in the land of the blind’.

One study conducted across health, education and care reported ‘the findings expose an acute lack of autism-specific training that has detrimental impacts. At best, this training was based on brief and very basic awareness raising rather than on in-depth understanding of issues related to autism or skills for evidence-based practice.’ (Dillenburger, et al., 2016). There is ample academic evidence readily available that shows education, health and care professionals do not have the knowledge, confidence, or training to work with Autistic people. Research has also found that those with minimal Autism training are then regarded as experts in the field and then become the trainers for the next generation despite the quality of training being severely lacking. This leads us to a position of credibility excess being afforded to poorly trained professionals and perpetuating a never ending cycle (Dillenburger, et al., 2016).

Finally, we have the question, Who defines what is and isn’t expert enough?

Ultimately, there must be more investment in training and development in public sector services so there can be increased expertise and confidence around Autism. We must define a basic national standard for what ‘expert’ is and the training required to meet that standard. Currently, ambiguous definitions place health professionals in a position of potential credibility excess, whereby they are assumed to be ‘expert’ and those receiving support from them may feel unable to challenge or question, this could serve to further exacerbate an already existing power imbalance (Joseph-Williams, N., Edwards, A., & Elwyn, G. 2014).

One might consider that it is time to “throw away the master’s tools” as Nick Walker so eloquently explained in her book Neuroqueer Heresies (Walker, 2021). The current system does not provide the means to overhaul and redesign it, we must look to a future built by those who need the system to survive.

You only have to scratch the surface a little to understand that this issue can’t be solved by throwing money at the situation. The entire system needs an overhaul, from the foundations up.

There is another solution… Listen to Autistic people. Parents are starting to understand, and access resources and community created knowledge (that is lightyears ahead of the academic research). Why are professionals not jumping on this bandwagon with us? No doubt we’ll answer this question in a whole other entry to this series. Models of disability, testimonial and hermeneutical injustice, just a couple of the reasons.

Are professionals at risk of making themselves obsolete? There certainly is a risk of highlighting ineffectiveness in a highly competitive field, is this ego? We’re afraid this conversation will have to be saved for another day. The conversations on Autistic suffering appear to be never ending.

We leave you on this note; “you wouldn’t call an electrician if you had a leaky tap” (Mary Cartilidge, Specialist Independent Social Worker, 2021).

Bibliography

Department for Health and Social Care & Department for Education, 2021. National strategy for autistic children, young people and adults: 2021 to 2026. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026

Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

Office for National Statistics. (2022) School Workforce in England https://explore-education-statistics.service.gov.uk/find-statistics/school-workforce-in-england

Walker, N. (2021) Neuroqueer Heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

Published by David Gray-Hammond

David Gray-Hammond is an Autistic consultant and trainer, educating on the topics of Autistic experience, mental health, and drug and alcohol use. He has several years experience in this area as well as personal lived experience. You can find out more about his consultancy services at www.dghneurodivergentconsultancy.co.uk

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