Untypical, page 5
Let’s start with the process of an autistic person discovering something’s wrong with their health. This part alone is fraught with difficulties. First, there’s the issue of interoception – the ability to identify and act upon the sensations and requests made by a person’s body. This sense is crucial in discovering that there’s a problem, and it often doesn’t work for autistic people. Some, for example, will fail to be notified by their body that they’re hungry or thirsty. I have this problem myself – I never seem to feel thirst until it’s extreme, and I can go a whole day without drinking anything, only realising at around 8 p.m. that I’ve a dreadful dehydration headache and a dry mouth. Similar issues can be found in sensing the signals telling us to go to the loo, with predictably stressful consequences.
The most insidious presentation of this, however, is in the way our bodies communicate pain. Being able to tell our healthcare professionals what level of pain we’re in is pretty useful. It seems to me that doctors kind of rely on this in order to make their judgements – after all, it’s impossible to access the inner systems of a human patient in the way an IT technician can figure out what’s wrong with a computer. Doctors and nurses rely on people to be able to say that their pain levels are, say, 6 out of 10 and for this to mean something.
Trouble is, ask me what my pain levels are and I’ve no idea. This is to some extent yet another example of interoception problems, but it’s also a result of our erstwhile communication issues. I can’t take the question at face value, and I find it impossible to be presumptuous enough to answer with confidence. After all, I don’t know what 10 out of 10 for pain would be. I can assume I’ve never experienced pain that severe – for all my migraines and cluster headaches, I’m certain that someone else somewhere has experienced way worse pain than that. Without a frame of reference I’m lost, so the safest and most logical thing to do is hang around the average and say ‘5’.
The problem with this is that most doctors will immediately think, ‘Oh, well in that case, it’s not too serious,’ and make a note that all is reasonably well. Trying to be careful and logical, avoiding being ‘grandiose’ or exaggerated, could cost us care that we desperately need, because unlike most neurotypicals we may be more averse to exaggerating or saying things that feel ‘untrue’ or ‘inaccurate’. It may seem silly, but it’s a real problem. The solution is either to get autistic people the world over to somehow ignore their aversions, or to educate doctors in these simple facts so that when they’re speaking with autistic patients they know that subconscious understatement is a possibility, and adjust their practice and decision-making accordingly. I know which of these options is easier and more reasonable …
Communication issues aren’t limited to this one example, however. They go all the way through the healthcare process, starting with the absolute bane of my existence – telephones.
For reasons best known only to God, or Cthulhu, or whomever you subscribe to, British GP surgeries still seem to prefer to arrange doctor appointments via the time-honoured system of forcing people to make a desperate phone call the minute the surgery opens, hoping against hope they’ll snag an appointment. It’s as if the revolution of the internet, with its email and online booking systems, has completely passed them by. Although there are some surgeries where online booking is possible, or even necessary, phone is still king in the world of the NHS. When I asked the autistic internet about this, 500 out of just over 900 respondents said they were still forced to make phone calls to book an appointment; that’s over half autistic people having no choice but to pick up the phone when they’re ill. Many of them mentioned that they struggle to see their doctor for that very reason, with one person (‘@Charliesays’) saying that they actively avoid making appointments because of the stress of phone calls. All this is a result of ableism.
As we’ve just seen, it’s known that scores of autistic people are petrified by phones to the point of avoiding ever using them. This is also absolutely known by everyone in the medical profession. As stereotypes of autism go, it’s a well-known and unusually accurate one. And yet here we are, in 2022, still forcing them to make phone calls when they’re unwell. It simply won’t happen, and as a result autistic people all over the country and indeed the world may be missing out on vital care, because we cannot overcome the first hurdle. I once tried to set up the ‘online booking’ system at my own GPs, but failed because the first thing I had to do to establish this means of securing medical help without having to pick up a phone was make a phone call. As a result, whenever I want to speak to my GP – perhaps about a serious condition such as my high blood pressure – I have to make a phone call that causes my blood pressure to spike alarmingly, and usually leaves me with a migraine. This cannot be the correct way for medical care to operate.
Even if we do manage to overcome this hurdle, there’s the communicative difficulty of having a conversation in person with the doctor at their surgery. I find this so stressful that I rush it, and find myself back in the open air having failed to ask three of the four questions that I’d carefully prepared. Just like all instances of communication, explaining a health complaint to a doctor is riddled with potential issues and opportunities for misinterpretation. Personally, I’m intimidated by the power imbalance that exists between doctor and patient, and I spend most of my time trying to ingratiate myself with them in the hope that this will encourage them to take me seriously. Part of this involves not taking up too much of their time, so once I have the first thing explained and out of the way, I feel unable to mention any of my other problems for fear of irritating them. In my case, I think this is yet another trauma response around communication generally, but it’s very debilitating as I find myself either having to make a follow-up appointment – by phone – or simply moving on and hoping that the symptoms I wished to discuss go away on their own.
Honestly, it’s a wonder that I’m still alive.
The problem is that doctors, despite their necessarily close proximity to developments in understanding neurology, are often just as prone to believing in the old stereotypes as anybody else, and the NHS doesn’t have a very good history of providing cutting-edge training on autism (something that’s beginning, finally, to change with the introduction of the new Oliver McGowan Mandatory Training in Learning Disability and Autism for healthcare professionals – look closer into the tragic story of what happened to Oliver McGowan, a young autistic man, to see how bad things had to get before real positive change was permitted). Many doctors simply don’t know all that much about autism and the way that being autistic affects our communication and our ability to access medical care.
Personally, I think a few minor tweaks and changes could have huge ramifications for autistic people’s health care: making email contact standard in accessing GP appointments would be an excellent start, and surely not beyond us as a technologically advanced society. Doctors who understood autistic people’s communication differences and executive dysfunction would be a fantastic follow-up. Imagine if doctors were trained to ask if we had any other concerns in a way that didn’t sound as if they were about to attack us if we were unwise enough to say, ‘Well, there is one other thing …’ If they knew that their autistic patients might be struggling to tell them everything, then perhaps they’d expedite that process by giving us more opportunities to share our other concerns, or have a system whereby we could write down our health worries while arranging our appointments. Why does everything have to involve speaking, after all? Are they not aware that many autistic people are either non-speaking or selectively mute?
If the NHS were to introduce electronic appointment booking as standard, with the capacity to enable us to write down why we need to see the doctor, in sufficient detail, then I’m confident that thousands of autistic people would finally begin to receive the healthcare that they have a legal right to.
But I’m just a guy who has no power to make this kind of thing happen, so in the meantime my recommendation would be that autistic people might want to try getting used to taking a companion into appointments with them. Having a friendly second person (a family member, partner or friend) to make the phone call and help you cover all of the necessary aspects of the doctor’s appointment is invaluable – so long as you’re in a lucky enough position to have a person like that available. Having that second pair of hands, eyes and ears in the high-stress environment of a surgery is incredibly useful, and for the time being is probably the best way to ensure the best outcomes.
I just wish we didn’t have to rely on the kindness of others so much.
Perhaps, then, you might now understand how important it is to consider changing your expectations when it comes to communicating with autistic people and to be compassionate towards our differences:
Be aware that we wear masks much of the time, and as a result we may be struggling with the conversation (and life generally, sadly) much more than you realise. Some of us are so expert at this that we manage to hide being autistic even from ourselves.
Remember that wearing ‘the mask’ is exhausting. If you’re part of the reason we’re wearing it (i.e. because you cannot tolerate being around us unmasked), then it’s worth reflecting on that …
Don’t judge us if and when we mess up with small talk and those little extraneous bits of communication. If we overshare a little, is it the end of the world? If we’re obviously trying to get away from the conversation, is that too much for your ego to bear? Be kinder, and realise we don’t all like talking as much as you might.
If we do have a meltdown, then follow these rules of thumb: back off, give space, reserve judgement. The last point is so important: don’t contribute to the shame we already feel for losing control.
Understand that our communication differences can have drastic outcomes, especially when trying to get healthcare. Be prepared to help ‘translate’ our experience to busy, uninterested professionals if you can.
2
Autism and Friends
The empathy myth
I first properly heard about autism at school. Not when I was a student – I often wonder what life would have been like if I’d been identified as autistic at a young age – but in my career as a teacher. ASD (autistic spectrum ‘disorder’), as it’s known in such circles, is something that comes up a lot when you teach. After all, the number of children being diagnosed as autistic has been rising rapidly now for many years. Many people, usually from a position of considerable ignorance, cite this fact as evidence of some terrible ‘epidemic’ of neurodivergency, suggesting that a nefarious something (famously the MMR vaccine) is causing this terrifying increase.
This is looking at the phenomenon from entirely the wrong angle. The truth is that our understanding of autism has developed in leaps and bounds since the early 1990s. We are now, as a society, far more aware of the fact that autistic people exist in all demographics. The revelation that girls and women can be autistic in considerable numbers – imagine! – has increased overall numbers hugely, as has a better awareness of autism in indigenous, Black and other marginalised communities. In such circumstances it would be strange for numbers not to increase.
It’s common now for every class to have at least one autistic student, often three or four, so teachers have quickly begun to understand more about autism.
Or so you might think.
The unfortunate reality is that, generally speaking, autism understanding in education is pretty old fashioned and of poor quality. It’s driven strongly by debunked myths and stereotypes, and struggles to keep up with contemporary theories and concepts. My training on the topic, delivered by non-autistic teachers and trainers, was therefore befuddled and riven with mis-information. Out of the many stereotypes on offer, the worst offender was the myth that autistic students don’t have the capacity for empathy.
Empathy is an important part of being human. The ability to recognise and share the emotional experience of other people is a huge part of our shared society. And apparently autistic people don’t have it. This isn’t a niche or uncommon view. It’s everywhere, and one of the most widely circulated myths about autism. The idea is that autistic children have no comprehension of the fact that other people have separate thoughts and beliefs, nor do they possess the ability to understand that others may be feeling different emotions from themselves. As a result, they behave awfully – in short, they’re presented as self-obsessed monsters.
If you establish that a group of individuals lack empathy, then you’re immediately prejudicing the rest of the population against them. Thoughts quickly turn to the similar media stereotyping of ‘psychopaths’ or ‘sociopaths’, who are often displayed as subhuman nightmares, despite both being neurological conditions. From there it’s only a short jump to images of Patrick Bateman (Christian Bale) in his waterproof onesie in American Psycho or the terrifying eponymous child in We Need to Talk About Kevin. These are not fictional touchstones that autism deserves, and the continued spreading of the myth of unempathetic autistics will only make the situation worse.
The fact is that autistic people can and do possess empathy. Some have more than others, just like in the neurotypical community. Certainly, the form of empathy that deals with emotional and physical pain is often in abundance in autistic people. I cannot see a person suffering (for example a baby crying) without feeling intense sorrow and worry on their part, to the point where my absorption of the emotions of the moment can be debilitating. Autistic people regularly report feeling like ‘emotional sponges’ – upon walking into a room where some kind of conflict has taken place, we’ll so frequently immediately take on board all of that negative emotion (some might call it the ‘vibe’ or ‘atmosphere’) that it can result in our having to sit down, or even bursting into tears. I’ve walked into rooms where it has been so obvious to me that the inhabitants have swiftly paused an intense argument, despite their smiles, and have walked out again feeling sick with the tension and misery in the room. It might not be identical to neurotypical empathy, but to suggest we have none at all is just plain daft.
However, as with all stereotypes, there are nuggets of truth in there – not enough to make it a valid proposition, mind – and it certainly is worth examining them. For all the feeling of emotion going on like a frothy, boiling tumult inside of us, autistic people very frequently don’t show that emotion, nor do we quite know what to do with it. For example, there’s a particular trait of autism (and some other neurodivergencies, such as schizophrenia) known as ‘flat affect’. You may recognise it if I mention two similar concepts – ‘poker face’ and ‘resting bitch face’. However, while poker face is usually a purposeful thing and resting bitch face has distinct negative effects, flat affect is a total neutrality in facial expression. No matter what’s going on inside, the face will not reflect it. This can lead to the awkward situation where an autistic person may be absolutely emotionally floored by the sadness of a friend, but look completely nonchalant and unbothered. As I’m sure you can imagine, this might lead to some problems. Although flat affect is by no means universal to all autistic people – many of us are very expressive indeed, and I count myself as one of those – it’s common enough to mean that you’ve probably met a few folks who display it.
And then, even if we do manage to show our sympathy for and understanding of your emotional state, we may have no idea what to do in support. This seems to me to be a common situation, and it’s one that I recognise all too well. Feeling deep human empathy with a good friend or partner as they sob about some awful occurrence, I sit there awkwardly, kind of frowning, perhaps pursing my lips a little. It might be that the idea to give them a hug materialises in my head – though equally it might not – but I’m often so wracked with uncertainty that I never get around to doing it. Instead, like the character of Benjamin Poindexter in the Daredevil TV show, I rely on stock phrases that I know will work: ‘I’m so sorry, that must be so hard.’ Not because I’m grasping at straws for what emotional event is actually occurring – I get that – but because I just don’t know how to respond; I’m lacking that part of the social script, in the same way I’m lacking the rules of ‘small talk’.
There’s another part of empathy that’s very interesting, from an autistic point of view at least, and it’s related to something called the ‘theory of mind’. Generally speaking, this is a person’s ability to recognise that other beings have their own thoughts, agency and emotional states – that they are, essentially, autonomous creatures separate from you and your particular thoughts and ideas. So, as an example, if I were to ask you to guess what I was thinking, as an autonomous being yourself you’d probably not assume I was thinking about exactly the same thing as you happen to be (i.e. ‘Why is this strange man asking me questions, and where did he come from?’). Congratulations! You have theory of mind, and are consequently viewed as a fully fledged human being. Good for you.
Unfortunately, theory of mind has long been said to be missing in autistic people. Never mind that theory of mind is used as a standard test of sentience in animals, which raises uncomfortable repercussions when suggesting a human is lacking it – it’s about as standard a concept in autism research, at least in the 1990s and 2000s, as you’re likely to find. The assumption is based on bizarre research that I’d like to outline here, involving a story about two children who hide stuff. An autistic child is shown the situation in the tale – that one child hid one of the other child’s toys in a bag while they were away on the toilet or whatever – and asked where the returning child would look for the toy when they realised it was gone.
