When empathy isn’t quite empathy…
An autistic friend recently posted online, asking for help on how best to self advocate and be open about her ‘Aspieness’ when people, colleagues in her life automatically compared issues that she brought up to their own as “I do that too” (you’re no different) and often appeared embarrassed when autism was discussed.
This was something I and many people in my online autistic group related to and I had this to offer her….
I THINK the reason people say “I do that too” etc actually comes from a place of kindness — society views ‘norms’ and we are ‘pack’ animals so the natural thing is to try and empathise, show understanding and demonstrate we aren’t really that different. The concept that ‘people like people like themselves’.
We all do this on other subjects, think about when someone tells you a loved one has passed away, a natural reaction is to talk about a similar experience to show the person you understand what they are going through.
This is Empathy — being able to put yourself in someone else’s shoes!
As autistics however, we want our differences to be understood, because we know we think and feel differently from others — we have spent our lives on the outside looking in and not understanding why, until we found out we were autistic.
With this new found knowledge we want to be understood.
Non autistic people generalise, so I believe their assumption is to only look at a behaviour level — of course some people will also have some similar behaviours eg ‘I don’t like speaking on the phone’ or ‘I’m tired after a night out’.
What people don’t or aren’t able to do so easily is to go to a deeper level and understand the ‘experience’ we as autistics are feeling, that leads to these behaviours. They don’t understand the panic, the uncertainty, the need for structure in certain situations, the sensory experiences. This most likely is two-fold, as an autistic I can explain quite easily behaviours, but connecting to my emotions and communicating how I ‘feel’ without appearing as if I’m describing another person is extremely difficult — although I can write about it!
If I can’t describe it, it becomes difficult for another person to understand it. One of the ‘triad of impairments’ as put forward by Lorna Wing and is often used in diagnosis, is a lack of ‘social imagination’ or lack of ‘Theory of mind’. I have mixed feelings about this, as this is what often leads to the perception that autistic people have no empathy.
However, if 1 in 68 people are autistic, it stands to reason that 67/68 people are thinking and feeling in a fairly similar manner, therefore if they are relating to their own experiences, social imagination is not that difficult. Empathising with another ought to be relatively easy, although we know there are plenty of unempathic people in the neurotypical population, given by conflict and misunderstandings in this world!
If you take one very self aware autistic person, who understands that they do not think or feel like ‘others’, they most likely realise that they feel different and are on the outside but quite probably don’t know why. They are processing information very differently from others and experiencing the world in a unique way, they process details and facts and information and see the world in a very ‘literal’ way, but they don’t realise others don’t have the same experiences as them. It stands to reason, their ability to imagine the world of a non autistic person is going to be extremely difficult. Many autistic people however, have good universal reasoning skills, based on logic and they can often get to a similar place using a different means (which can sometimes be more accurate than social imagination but if they are very honest and direct at expressing this, it can lead to unintentional conflict). This universal reasoning will allow them to perform very well at a Theory of Mind test.
There is such an irony — the people we are telling about our autism, I believe genuinely think they are being empathic towards us, yet we can feel very let down that no one makes an effort to go beyond the behaviours and truly understand us.
The double irony is, get an online group of autistic females together, communicating in writing, sharing blogs etc and there is no lack of empathy. Every time a post is made, everyone goes ‘yeah I really understand this’ and shares at a very deep level, their experience, their advice or just simply “We know what you are going through, we are all here for you”.
This is why I write my blog and encourage those who know me as well as those who don’t to read it.
When I told people I was autistic, I had the responses of ‘I do that’ etc — I also had the ‘so what’ and ‘I’m ok with you being autistic’ etc. Whilst I realise much of this was an attempt at empathy, it often left me feeling very invalid as a person. Some people have delved further, made comments “I like your personal posts as I get to know you better”. Some people have talked to me beyond behaviours and actually described what they experience. These people for me are the true empathisers, I feel understood and they allow me to understand them, even if our experiences are very different.
Telling another person you are autistic is a very personal event and the response is so important….
This post led me to write a further post “What I would like you to know about how to respond when I tell you ‘I’m autistic’”
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