It’s been stated that one of the gifts that autism brings is that it allows our community to experience the world as it is; free of prejudice, living in the moment and letting actions speak for themselves. But, as fate would have it, this gift doesn’t come without a price – as, in exchange for this perspective, autistic people are forever viewed as disengaged, disinterested and apathetic – no matter how many times we say otherwise.
As an autistic man/boy/person, you can only imagine how frustrated this makes me, and so to understand this frustration (and to help others understand how I understand this frustration), today I wanted to explain what autism means for emotional understanding. It’s time to put the long-outdated autism and apathy rumours to rest.
What is Interoception/ Alexithymia?
When we think of the most commonly known senses, often the thing that links them is how they are all responses to external stimuli. For example, when we are touched, we feel, when we are listening, we hear. But what about the things we experience internally like hunger, thirst, the need to breathe or the responses to our emotions? Well, when it comes to these things, interoception has your back.
In short, interoception is the forgotten older brother of the classic 5 senses which are more commonly known. It allows us to know what is going on inside our bodies and, without thanks, has spent years relaying messages from our body to the brain – such as, letting us know we are a bit peckish when we haven’t eaten, or telling us we need to whiz when it’s coming up to the most important part in a movie.
However, like the more commonly known senses, it seems that interoception isn’t exactly looking after EVERYONE, as when it comes to the autism community, it has been theorized that some 50% of all autists struggle with interoception (as a result of our old nemesis Sensory Processing Disorders).
This can mean many autistic people are prone to complications like:
- Anxiety, as we don’t pay attention to our pulse racing
- Eating disorders, as we don’t listen to our stomach shouting at us
- Insomnia, as we don’t know when we’re tired
- Understanding or regulating our emotion, as will be explained
That isn’t all though as, in recent years, studies have shown that not only do autistic people struggle with interoception but, 1 in 2 autistic people are also likely to have alexithymia: a newly theorized (extremely difficult to pronounce) personality trait; which is defined by deficits in interoception and an inability to articulate the emotions we do successfully process.
Make no mistake though, this doesn’t mean autistic people can’t feel emotions. Instead, it explains how, in some of us, our bodies can be challenged in regulating these feelings and we can subsequently be hard-pressed to find the correct emotional response at a socially appropriate time – for example, during moments when someone might expect a smile or frown we may come up with, well, nothing.
What about Theory of Mind and Mindblindness?
If you’ve played the match the emotion game with an autistic person, where you say a feeling and match it to the face, then you’re probably already well versed in what theory of mind is but, to put it simply, if interoception and alexithymia can make understanding our own emotions a pain then a lack of theory of mind can make interpreting other people’s like a swift kick to the nut sack.
Conceived by autism-guru Simon Baron-Cohen, theory of mind is best described as the art of ‘thinking about thinking’ or, in other words, it’s the ability to apply intent, beliefs and values to other’s actions.
As you might well guess, a lack of theory of mind can be problematic in autistic people (as well as fairly common), which is why, those of us who do struggle with it, may find things like idioms and metaphors challenging. Additionally, theory of mind is often the reason why autistic people are perceived as ‘literal’ – because we work on facts instead of unspoken rules.
When someone does struggle with theory of mind, they will often be described as having mindblindness or ‘not being able to put yourself in someone else’s shoes’. However, in my experience, it’s more accurate to say that mindblindness is seeing those shoes, putting them on and then quickly throwing them in to the sea when I realise they don’t go with what I’m currently wearing, i.e. it’s not that I don’t see your point it’s just that it doesn’t make sense compared to the knowledge I already have.
Many will witness this and assume that autistic people are all shortsighted. However:
- Not every single autistic person struggles with theory of mind (and many autistic people even OVER empathise)
- Those that do, can easily overcome this if people stop dressing up their messages with sarcasm and overwhelming jargon
How to help autistic people understand emotions?
Okay, so I’ve had a change of heart. While I generally wanted to finish this article with a list of therapies for autistic people who struggle to convey emotion, I couldn’t help but think that although social stories, speech therapists and the more bizarre use of flotation chambers all make for great talking points, it seems odd that we place the burden on improving communication on those with the deficits.
We all know that communication is a two-way street but, despite even the best of intentions, there are many people out there who will misinterpret the direct way in which some autistic people can communicate as an autist not trying to open up at all. This is a problem as even the least independent and non-verbal autists have something to say and ignoring us will only make us more withdrawn.
As such, while I would be a fool to completely disregard all therapies on offer for people with mindblindness and alexithymia, I would first encourage people to take a step back and look in from a different perspective. Ask yourself, is it really the autistic person who needs to change the way they communicate, or can we adjust our listening to recognise the emotions that are already there?
Carry on the Conversation:
What do you think of the autism and apathy rumour? Where do you think it comes from and what can be done to dispel it? Let me know in the comments below. And, if you want to hear more about autism and emotions check out this gooey article in which I interviewed my now fiancée to understand: Can a Person with Autism be in a Relationship?
As always, I can also be found on Twitter @AutismRevised and via my email: AutisticandUnapologetic@gmail.com.
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Thank you for reading and I will see you next Saturday for more thoughts from across the spectrum.
