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Jul 24 2023
Hyper-empathy, mirror-touch synesthesia, and the Autistic experience of pain

Autism is often conceptualised as a neurocognitive style that leaves a person entirely more concerned with their needs than the needs of others. Autistic people, in particular (when compared to attitudes around non-Autistic people), are often positioned as lacking emotional and cognitive empathy. However, for some Autistic people, their experience of empathy can be so intense that it is almost debilitating. Where this gets interesting is when it instersects with synesthesia, more specifically, mirror-touch synesthesia. Let’s start with some explanations of what we are discussing.

Emotional and cognitive empathy

Cognitive empathy allows us to imagine what another person might be feeling. This is essentially the “what would you feel if you were in their shoes?” question. Emotional empathy then is when we experience another person’s feeling as our own. We feel their feelings with them. This can be a complicated experience for alexithymic people who already struggle to identify and express their emotions.

Hyper-empathy

Hyper-empathy is quite common amongst Autistic people. Unsurprisingly, a Google search will turn up various medicalised and pathologised takes on such a phenomenon. However, this can be understood as experiencing greater levels of empathy than expected.

Synesthesia

Synesthesia is the experience of one’s senses crossing over with each other. One might hear colours or see music. While not unique to Autistic people, synesthesia is significantly more common within out community

Mirror-touch synesthesia

Mirror-touch synesthesia is a specific kind of synesthesia where a person can feel the sensation of another person being touched. For example, if you saw someone be poked in the arm, you may also feel a poke in the arm.

The overlap

As you might imagine, the intersection between the experiences of hyper-empathy and mirror-touch synesthesia can be quite intense. Seeing someone injured themselves can trigger anything from a nervous jolt at the site of the person’s injury, through feelings of every nerve in your body firing or literally feeling their pain. When we consider overestimated states of emotional empathy on top of this, a person could literally go through someone’s else’s traumatic accident as thought it were their own.

This is interesting to consider and has far reaching ramifications for therapists working with traumatised Autistic people(and we experience a lot of trauma!) Not only do we have to manage our own trauma, it’s possible that we have to now process trauma we have witnessed. Given the neuronormative nature of the medical field, this opens us up to a great deal of invalidation and gaslighting with regard to our own experience.

Aside from this, there are other considerations to make. Some Autistic people report having this experience while watching films or other media that contain violent content. Should we now be considering that some forms of media may add to the trauma load that a person is carrying with them?

It raises questions about the ethics of depicting violence in creative media.

Whatever your experience, existing on this intersection can be exhausting, leading to burnout and deterioration in one’s mental health. We need more research to consider these kinds of issues that have an impact on our quality of life.

David Gray-Hammond 0 Comments
Jun 24 2023
Autism and pain: When pain management options are limited

I have recently been writing about the Autistic experience of pain and the risk that it presents to Autistic people when medical professionals do not understand the way we display pain. Some of us, however, live with chronic pain and are prescribed painkillers. For a lot of people in that position, narcotic pain relief serves as the only option. What people often don’t realise is that being able to use narcotic pain relief is a privilege, and not all of us have that privilege.

I am not only Autistic, ADHD, and Schizophrenic. As of this year (2023), I am seven years sober from drug addiction. The drugs I was using that are most relevant to this conversation were opioids, benzodiazepines, pregabalin, cannabis, and spice. I was using all of these drugs very dangerously and, as a result, have chosen a life of complete abstinence. If I hadn’t, doctors would not prescribe anything similar to them anyway.

This has left me with very few options for the pain I experience related to my hypermobility. Realistically, I can only take paracetamol and naproxen. Neither of these offer much relief from bad pain days, but they do reduce the pain just enough that I can mask it.

Addiction isn’t the only exclusionary factor that can stop people from accessing the privilege of strong pain relief though. Allergies, or an intolerance to side effects, make the use of strong pain relief impossible. Even in countries where medical cannabis is legal, cannabis is not suitable for everyone. For me personally, cannabis use always ends with me using harder drugs. For some, it affects their mental health or makes them experience unpleasant thoughts and feelings.

This has landed many Autistic people in a sticky situation. We have nowhere to turn for pain relief. Pain we may not express in a “typical” way or be able to articulate. It means living in a state of constant dysregulation. Despite this dire need for strong pain relief that does not have mind altering effects, pharmaceutical companies are yet to create anything.

Autistic people are significantly more likely to experience chronic pain, with Autstic children being twice as likely to experience it as their non-Autistic peers. We then have to consider the risk of addiction in Autistic people due to self-medicating. To top that off, just over a third of addicts in this study were abstinent upon successful discharge from treatment. To me, these statistics say that there are a significant number of Autistic people unable to manage their pain effectively without the risk of relapse into addiction. Let’s also not forget the risk of habituation among people new to opioid pain relief.

The cherry on top of all of this is that recovering addicts who ask for pain relief are often accused of drug-seeking and ignored. This can only be compounded by professionals who do not understand Autistic presentations of pain. There is a great deal of stigma around addiction in professional circles. With chronic pain being a risk factor in already elevated suicide rates amongst Autistic people, this is an issue that can not be ignored.

When researchers are spending millions on looking for why we exist, rather than trying to improve quality of life with regards to things like this, is it any wonder that there is a gulf between us and them?

David Gray-Hammond 1 Comments
Jun 17 2023
Autistic people are dying early; medical perceptions of pain are contributing

I recently posted about Autistic people and the expression of pain. One thing that has become clear to me is that not only do we not have the same relationship with pain as non-Autistic people, people in the wider environment constantly invalidate that relationship because they don’t want to believe our lived experiences.

Original post on Twitter

There are a lot of aspects of Autistic life in which we don’t highlight the disparity in cultural competency amongst professionals. Unfortunately, healthcare is not a battle we cam choose to walk away from. Our lives literally depend on being taken seriously and treated respectfully. There are some troubling statistics around Autistic life expectancy and mortality. In my opinion, there is correlation, if not a causative relationship between medical mistreatment of Autistics and these harrowing statistics.

Of the statistics, I have seen life expectancies around the age of 36 to 39 years of age (see here and here) for Autistic people. I have also seen suggestions that we are 51% more likely to die in a given year than the general population. I don’t think I need to push the point much further. It is clear that we are not a demographic that necessarily has the best outcomes in life.

Our experience of pain is intimately linked with our sensory experience. In particular, interoceptive differences mean that we can have a completely different response to pain than our non-Autistic peers. Monotropic brains mean we might not be able to stop thinking about the little pains, but may not even notice something significant or life-changing.

The way we embody pain is different as well. Autistic people are known for having different physical expressions, and when you throw in the significant relationship between the Autistic community and the chronic pain community, we can see why an Autistic person may not appear to be in as much pain as they claim to be.

This doesn’t absolve medical professionals of their lack of understanding. When a person works in healthcare, they should be taking people seriously, regardless of whether an ailment presents in the way that is expected or not.

I posit that dismissive attitudes amongst medical professionals and medical gaslighting lead to further health complications from i jury and illness. To consider it another way, if doctors took us seriously, we would probably live longer and happier lives.

For those working in healthcare, I applaud the care you give to many, but there is so much not being done for Autistic people that it can not be ignored. Autistic people are dying every day from ailments that needn’t have been terminal. Next time someone tells you their experience, believe them.

David Gray-Hammond 2 Comments
Jan 30 2023
Neuroqueering and the Autistic expression of pain

Neuroqueering is a liberational practice. It allows the person to express themselves authentically. But what if authentic expression of Self could cost you your life? What if the people observing you are basing their judgements on a majority group that does not express themselves in the same way that you do?

This is why we need to talk about Autistic people and pain. When we express pain, both emotional and physical, we often embody thar experience differently to the neuromajority. Autistic people have a complicated relationship with pain, and for the sake of simplicity, I would like to consider physical pain.

In hospitals around the world, pain is often recorded using numerical and visual scales. These rely on a person being able to articulate the way they are feeling on a numerical scale and be witnessed to display pain visually in a way that marries up to that figure. One might think it’s a simple system, but if you are Autistic it presents a significant challenge.

Autistic people often experience alexithymia. We struggle to put internal sensations into words. We often can’t articulate what we’re feeling to ourselves, let alone a doctor on a numerical scale. At the same time as this, we often do not express pain in the same way as those of a predominant neurotype.

How many of us find paper cuts unbearable while walking around daily experiencing delirium inducing chronic pain? An example from my own life is the 10 hours I spent walking around with a collapsed lung. I was in agony, but I didn’t respond “typically” to that pain, nor could I articulate its severity in a way that made sense to others.

Enter in the era of the neuroqueer. We are witnessing the birth of a post-normal society. This is a world where Autistic and otherwise Neurodivergent people feel more and more like they can embody their experience in a way that means something to them, and not for the benefit of others. This means that modern medicine needs to also evolve.

Unless healthcare professionals familiarise themselves with the Autistic expression of pain, many of us will be failed (or even killed) by a lack of clinical competency. That is what it is. There is no clinical competency that should not, or does not include an understanding or minority groups experiences of pain.

Neuroqueering is a wonderful thing, but it really does shine a light on the failings that befall Autistic people.

David Gray-Hammond 0 Comments
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