Supporting the

Neuroendocrine Cancer Community

Neurodivergence is wider than autism, but this piece specifically refers to autism.

Autism is a spectrum disorder, so it is variable: no one with autism experiences being autistic in the same way, so although this is my experience, and there are likely commonalities, others may experience things differently.

I have both autism and neuroendocrine cancer (NEN, or neuroendocrine neoplasm).

Autism complicates healthcare, due to communication and social difficulties, somatic and sensory sensitivities, and also because there are differences in physiology differences that are not always anticipated or appreciated.

Most people are aware of the socialaspects of autism, but not the wider impact. The tragedy of Oliver MacGowan proves that we do not always respond to medication as neurotypical people do, response to ill health can be different, and that a failure to be aware of those potential problems can be detrimental or even fatal. 

Pain is a good example.

I had infective discitis, one of the most painful infections possible, but it was not diagnosed for nearly 6 months because I didnt display pain properly. People with autism tend to have altered pain response they feel pain, but it may not show physically or emotionally:

I was told If the pain was that bad, you would be writhing

People with autism mask, and that can include masking pain – I truthfully responded I dont writhe 

I prefer to hide it because I can neither control it nor deal with it. 

Because of sensory perception, we may interpret and report symptoms in uncommon or unexpected ways, showing enhanced sensory or somatic awareness: For example, I can feel when a cannula enters my vein:  

I will say youre in, or youve missedwhen being cannulated – the reaction is inevitably you cant feel that: . . .Yes, I can, and I do. 

Its common to have an intolerance to sounds (misophonia), lights (especially fluorescent), smells, and textures. Imagine being examined under a bright fluorescent light when those lights make you feel anxious and nauseous, or waiting for a considerable time for someone to turn off the alarms on a beeping IV. 

Some of these intolerances can be extreme. 

Some common intolerances may seem less so but aren’t, including people chewing and slurping, and repetitive high-tone beeps. 

Imagine being in a hospital ward, and feeling assaulted by food and body smells, the cacophony of everyone talking, TVs, phones, radios, eating sounds, and then IV and air mattress alarms beeping away. 

Its pure hell and trying to express the degree of actual physical discomfort it causes can lead to being accused of entitlement”, intolerance, and “selfishness. Add a layer of please dont use your phone without headphonesand the distress from the sound is compounded because the person is breaking a rule meant to prevent the sound from upsetting others.

Part of autism is an affinity for rules, order, consistency, and structure. We like things to happen the same way and at the predicted time. If something is dueat a certain time, deviation causes not only anxiety but a feeling of unsafeness”. We find rules reassuring and comforting, so when people break or ignore the rules, we can feel unsafe and confused – and feel those who have not followed the rules are not trustworthy.  

This is just as true of minor socialrules as of policy, law, and professional guidance – we will tend to weigh them equally. It can seem very pedantic and lead to being called Karen, but our sense of security relies on consistency and order. We dont have any other way of figuring things out.

Becoming overwhelmed can result in extreme agitation and distress, which others will often perceive as rudeness, sarcasm, passive-aggressiveness, and generally unreasonablebehaviour. The persons tone of voice, volume, and word choices can result in being perceived as “arrogant, bossy”, or superior when in reality it is unlikely this is intended. This puts the autistic person at odds with the people they need.

Severe anxiety can lead to a meltdown, an embarrassing decompression that looks like, and will be accused of being, a tantrum – when in reality it is the manifestation of fear and absolute panic. 

When the overwhelming stimulus becomes too great, a shutdowncan occur. This is when the autistic persons mind says, I dont know what to do – I quit. The person will isolate themselves emotionally, but also, actually refuse to engage with others, to speak, or even acknowledge the presence of others. This leads to accusations of being a drama queen (or king)” . . .or being a nut”, . . .but the reality is, it is involuntary and represents an extreme and completely overwhelming sense of panic, anxiety, and confusion:  

Its like when a fuse blows, and all the appliances shut down.

How does all this complicate having neuroendocrine cancer? 

In neuroendocrine cancer, the rules are ambiguous, information is scarce and often contradictory, and the physical symptoms like palpitations, flushing, abdominal discomfort, and heaviness in the chest are difficult to cope with emotionally. The odour of the diarrhoea can be triggering, and the sense of no one knows, the pervasiveness and levels of uncertainty, can be overwhelming – especially when you present for help, . . .   and the health care professional you’re talking with has never heard of it, so says it “does not exist 

A person with autism who also has neuroendocrine cancer needs friends, family, but most of all health care professionals to understand the impact of autism on the person and their needs, and to help them understand, feel safe, and communicate.

Some truths: 

  • people with autism do not intentionally become upset or difficult
  • medications and treatments might react differently
  • sensory and somatic sensitivity must be considered and accommodated.
  • clear, accurate, and honest, communication is essential
  • autism is a spectrum – get advice from the person, their carers/ family, and experts.

 

People with autism will always face challenges, even those who appear to have very high intellect. 

Every person with autism is unique, so care planning must accommodate that individuality. 

Anxiety is exceptionally common but can be ameliorated with good communication.

For me, as well as weaknesses, autism gives me strengths – but being a recipient of healthcare isnt usually an easy place to showcase those skills. Others just need to accept us as we are – just as we accept neurotypical people. 

‘Accept that you might not understand us, or that our presentation might be different 

because thats who we are.’ 

Bethann 2024 

 

Further Support

The National Autistic Society: www.autism.org.uk/  

We are here to transform lives and change attitudes to help create a society that works for autistic people. 

The Government has introduced a requirement for Care Quality Commission (CQC) registered service providers to ensure their employees receive learning disability and autism training appropriate to their role. This is to ensure the health and social care workforce has the right skills and knowledge to provide safe, compassionate and informed care to autistic people and people with a learning disability.  

This requirement is set out in theHealth and Care Act 2022. 

You can visitThe Oliver McGowan Mandatory Training on Learning Disability and Autism webpage for further information and updates. 

 Neuroendocrine Cancer UK: www.neuroendocrinecancer.org.uk 

A patient co-founded charity: we exist to address the unmet needs voiced by the Neuroendocrine Cancer community and to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.