Gwen: The following article was written by someone who’s guest blogged on Seeing Double before (see “Autism Services: a Parents Perspective) and also happens to be my Mum. She offers her own thoughts about autism and raises some interesting point about the neurotypical worlds understanding of empathy. I’m not sure I agree with everything she’s said, but I’ll save my own thoughts for the end of the article.

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Jane: Reading Gwen’s blog post about empathy set me thinking.  I’ve often wondered about empathy.  Where does it come from?  Is it something we can learn?  Is it genetic, instinctive, or maybe some random combination of all three?  My experience of Gwen, both as young adult and a child growing up is that she has never lacked empathy, if anything she has bucket-loads of it. She is usually the first in our busy household to realise when I am in pain or struggling with my own health condition, and offer the appropriate reassurance or practical support.  As a young child, when a close friend died unexpectedly she recognised my distress immediately, and just sat quietly holding my hand, offering a level of comfort and reassurance way beyond her years.  Her empathy with the plight of animals is well documented in our family history.  On the winter our house became infested with mice we couldn’t shift them whatever we tried.  It turned out Gwen was carefully protecting their “nest” in the upholstery of an ancient sofa, supplying shredded paper and crumbled cheese and biscuits whilst the rest of the house slept.

So what’s different about empathy for people with ASD, and where does this assumption come from that they lack empathy?  Looking back on my own family history and journey as a young adult offers some reflections, but raises more questions than answers.  As an adult, I would not consider myself to be a person with ASD.  A little quirky maybe, and someone who prefers the company of a small group of friends than a rowdy night out with the crowd.  But I have grown up in a family where several adults would almost certainly be assessed as being on the spectrum if they were in schools today.  In my early years of adulthood I struggled.  I was blessed with a tight network of close friends from home, and struggled with the chaos of student life, mostly failing to make any lasting connections.  My early years of working life were a nightmare of stress and feeling I was constantly underachieving and fighting to stay afloat.  For some perverse reason, I was drawn towards jobs demanding a high level of social skills, and often found myself struggling and wondering why life felt so hard.  Empathy was lacking and my behaviour towards a succession of well-meaning boyfriends was questionable.  I was not the person I wanted to be, but didn’t know how to make my life “fit”.  Looking back…..I could put this down to a combination of some underlying mental health issues, and possibly a lack of older adult role models with good social skills in my own life.  But more likely, I was just a late developer dealing with a prolonged adolescence!

As I grew older, life improved.  I’m now self-employed, consider myself to be a “people person” and really enjoy what I do.  As Gwen started primary school and her own difficulties emerged, I found myself questioning things again.  I was constantly being told that the little girl I loved, and felt I had a good relationship with had poor social skills and lacked empathy in her dealings with other children.  At this point she was not particularly unhappy (sadly that changed later) and so I tried to brush these things aside.  But a nagging doubt remained.  Was there something really “wrong”?  Was I a poor role model for her?  Was I a bad Mum who had somehow failed to teach her good social skills, (can they even be taught?).  When her Nursery Teacher (a specialist in child development) told me of her concerns that she might have ASD I was in denial.  Like many people at the time, I had a picture of autism as Dustin Hoffman in Rainman: someone with poor communication skills lacking in empathy and imagination.  This was clearly not my daughter who at the age of four had one of the richest and most fertile imaginations I had ever come across, and from what I could see was very caring to those around her.

So what is the “problem” with empathy and autism?  I don’t for one minute accept Simon Baron-Cohen’s assertion that people with autism lack empathy.  People with autism have different levels of empathy in exactly the same way those of us in the neurotypical population have different levels of empathy.  We’re all individuals.  What may be different in the autistic population is how empathy is expressed and communicated.  Social interaction in our society is defined by a complex set of rules and language, a framework created by the neurotypical mainstream that everyone can struggle to get to grips with.  If, as has been suggested in previous postings on this blog people with ASD understand and relate to this world differently, is it any wonder they struggle to express empathy in a way the mainstream can relate to?  People with ASD don’t need to change, we all need to show more understanding and be a bit more tolerant of different ways of expressing things.

***

Gwen: What can I say? Mum, I’m sorry you struggled so much both as a young adult and during my early childhood. My issues have nothing to do with you being a bad role model. You’re the best role model a daughter could wish for.

I don’t remember comforting my Mum as a child when her close friend died (my memory is like a sieve at the moment). However, I think I did well in that situation because of my young age. I wasn’t aware of my diagnosis or how socially awkward other people perceive me, so I just held her hand, going with my gut instinct rather than worrying about saying or doing the wrong thing. If I were alone with a grieving adult now, there’s a high chance I’d behave inappropriately. This is because I know I’m socially awkward, so the kind of situation I dealt with easily as a child would send me into mass panic as an adult, my brain working at 1000 miles an hour trying to process everything, test running every possible emotional response until in my head until I came up with the “right” one. In this scenario my understanding of autism can be a hindrance rather than a help, because it prevents me from going with my gut and empathising at a basic, human level.

I do remember hiding cheese in the sofa as a child to make sure the mice didn’t get hungry, and several other “charitable” acts that drove my parents just as mad. To this day I never kill an insect when I see one in the house or at work. I just pick it up as gently as I can, and place it outside where it’s safe from hysterical neurotypicals and their irrational fear of spiders (seriously? How can you be scared of something so tiny and harmless?) To tell the truth I find it much easier to empathise with animals than with humans. I love a good zombie film (the more people being eaten alive the better!) and I’ve never had to turn away from the gruesome deaths depicted in the Saw movies or American Horror Story. But when I saw an elephant being whipped in the movie Water for Elephants I experienced unimaginable distress and begged my family to turn off the television.

At first I thought this suggests what Temple Grandin describes as the ability to empathise on a sensory level rather than an emotional level (see previous article “Autism, Empathy and How Reading Helped Me To Understand Others”). But if I empathise on a sensory level, surely watching a human being physically harmed should cause me as much distress as watching an animal being physically harmed?

Now that I think about it, I spent more time watching zombie horror films when I was a) being bullied at school and b) being gossiped about at uni. In both these instances I could not relate to the people around me, and retreated into my own inner world, where the population was mostly zombies, vampires, rock stars and famous murderers throughout history (at one imaginary dinner party I seated Henry viii next to Marilyn Manson, and the two of them got on quite well). My ability to empathise was at its lowest. At the time I thought I was just a bad person, but now that I think about it, the so called “neurotypicals” around me were failing to empathise with me just as much as I was failing to empathise with them.

My Mum suggests we all need to be more tolerant of different ways of expressing things, and I couldn’t agree more. If you want an autistic person to empathise with you, then start by attempting to understand their perspective and empathise with them. Like most social skills, empathy is a two way street. My ability to empathise was at its lowest when I was receiving the wrong support for my autism. As soon as I got a support worker who tried to understand and empathise with me, I started working hard at empathising with others. This reduced the bullying/gossip, meaning I was gradually able to develop a social life. I still love zombie films, but my interests have branched out considerably, and when I do watch Dawn of the Dead I try root for the humans rather than the horde of blood thirsty zombies outside their shopping centre.

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