It is just after 7 pm on Autism Day (the United Nations one on 2 April). I have attended two events today, one a Yellow ladybugs art event for girls and teens on the Autism spectrum and their parents / grandparents / carers and the other a panel of clinicians which I chaired. I was very glad to be included in the panel discussion but it was quite challenging. I was the only Autistic voice on the panel and some of the clinicians held views I disagree with and / or find unhelpful. I am giving myself a metaphorical pat on the back for this one as I feel my chairing was positive and professional and I asserted the Neurodiversity / different not less / nothing about us without us sort of perspective quite well.
After the event I spoke to several of the audience members – many of whom were buying my books. One of the staff from Marymead who organised the event drove me home and I got talking to her and one of the clinicians, a psychologist just as I was leaving. We were talking about Autism and empathy (‘groan!’ I hear from lots of the readers). But the discussion was good as, among other things, I had a bit of an epiphany.
The thought I had has almost certainly occurred to someone other than me in the past. In fact I think Dr Wenn Lawson has a similar take but from a professional perspective. Wenn is one of my role models and an amazing advocate for Autistic people the world over so I hope I don’t step on his toes in any way. I am not a clinician, I have no medical or psychology training but this was my thought on empathy which I certainly hadn’t understood before but which I think is worth sharing with all of you in blog reader land.
Autistic people are frequently told we don’t have empathy but most often we do. I think the issue is often one of receiving information. Imagine that Autistic people tend to struggle with decoding facial expressions and body language but non-autistic people generally do not. Imagine a non-autistic person sees their mum and she is scared or sad or happy but she shows those things only via her unspoken language – through her eyes, facial expression and body language. The non-autistic person would see their mother and probably understand she is experiencing whichever emotion and respond accordingly. Now replace the non-autistic person with their Autistic sister or brother. The Autistic person most likely does not see or understand the non-verbal cues. When they don’t respond in the way a non-autistic person would, they are told they lack empathy (insert ABA here presumably). But I don’t think this view is necessarily correct. The Autistic person lacks the ability to pick up on non-verbal cues and KNOW their mother is experiencing an emotion. If their mother says to them ‘I am really sad because of…’ and they understand the verbal description they will probably respond with empathy and caring in their way.
So Autistic people are being painted as lacking empathy because they don’t respond to something they probably cannot see, understand or even be aware of – body language and facial expressions. I have heard a few clinicians and other professionals who work with Autistic people comment that they ‘lack empathy’ but they are also ‘very thoughtful.’ This is an apparent contradiction but I imagine the Autistic person in question may be thoughtful most or all of the time, it’s just they are unaware of what the person they are with is feeling unless it is stated. It is like someone saying an instruction in Italian to someone who doesn’t speak Italian – they are not being thoughtless, they just don’t understand the communication.
Given that Autistic people often have alexithymia (emotion blindness) they may not understand when someone says they are experiencing sadness or anger – or particularly more subtle emotions. This can once again result in the label of lacking empathy but is essentially resulting from gaps in the information that the Autistic person needs to understand what the other person is feeling.
I often talk about my own experience of cognitive empathy. That is, I can’t somehow emotionally pick up on what others are feeling but if they tell me or I have experienced a similar thing, I have a lot of caring and empathy. I think a lot of other Autistic people are similar to this. I made a conscious decision to be more caring and engaged wiht people when I was younger so I spent many years working out what different situations did to people’s emotional states and what worked best in response to that. In fact when I have taken EQ tests, my EQ (Emotional Intelligence Quotient) is off the scale. I think this is because I put my mind to building my emotional connectedness, so even though I have no idea what someone’s facial expressions are telling me and can’t feel many emotions myself, I have built a parallel set of emotional intelligence based almost entirely on thinking rather than feeling. As I often say in my talks ‘do what works!’
It is a bit much to accuse Autistic people of being cold-hearted and lacking in care if the information everyone else uses to build their own empathy is not available to us. Cognitive empathy is just as valid as the more typical emotional empathy. There is also intuitive or hyper-empathy which some Autistic people experience and which means they can pick up on feelings in people without seeing or speaking to them. Once again this tends to be misunderstood or dismissed.
Yup, as I so often end my blog posts, we are most certainly different not less.