You don’t look very autistic – the case for autistic empathy.
With no look of apology or shame, I make my way to what others perceive as the front of the queue and wonder at the intolerance of those who grumble at me. Without the slightest embarrassment I talk over customers speaking with the cashier and ask for directions to what I’m looking for and when I’m told off, I’m shocked at the rudeness of people. I will seize on a part of what someone has said and seemingly ignore what really matters. I will say what is logical with complete disregard for the feelings of others and will merrily chatter on topics which clearly relate to their pain with no thought for how insensitive I’m being. With no thought for the care of merchandise or people’s belongings, I have helped myself to furniture and hoisted myself onto shelves to reach something I have been told I can use and am confused as to why anyone would then be annoyed at me that I didn’t wait or ask for help. I will say hello to a neighbor coming out of her house then ignore her as she passes me in a car or down the street. I will push someone out of my way when busy doing something. Clearly I’m a bad and selfish person completely lacking in empathy?
Think again.
I have autism. Some of you will feel that proves your point, that I’m selfish, rude, lack empathy or consideration for others.
I’m also someone who cares deeply about the world, about inequality, injustice and am often the first person to help anyone who is lost, hurt, crying or in trouble. When I do, I’m not heart on my sleeve but purely practical, often if I don’t start joking about whilst doing so (because people’s feelings make me nervous) I’m rather po-faced and its very difficult to know what I feel. But what I feel is empathy, a deep caring, a feeling of wanting to make their lot easier, that life is hard enough.
So what of these other things? If I’m so empathic why do I do these seemingly rude, intolerant, unempathic things.
I’m intermittently meaning deaf and meaning blind, also context blind, face blind and lack a capacity to process a simultaneous sense of ‘self’ and ‘other’. What does this mean for everyday life, for communication and interaction.
Well, aside from being told ‘you don’t look very autistic’, being meaning deaf means that I will only understand parts of what I hear. Even then I will be utterly literal and effectively ‘meaning deaf’ to any deeper level of significance not only in what other people say, but in my own speech. I am speaking on an extremely literal level. Given I didn’t get even the literal meaning of sentences till late childhood this isn’t my failing. It’s my achievement. And its an achievement that gets so many nasty looks, nasty comments, nasty judgment from others in the community, that I tend to avoid most involvement, certainly with anyone new.
Being meaning blind means that I don’t recognise what I see until a second or so after I see it. Sometimes not until I touch it or move it. Once I move an object I know what it is. This is especially so if things aren’t in places that assist their recognition. So its like being blind, meaning blind. And context blindness is related. It means that I can’t process the part in the wider context of the whole. I can’t tell which end is the right part of the queue to join. Sometimes I’ll join any group of three people thinking its a queue and its not. I see things but don’t know what they are or how they might impact on each other. So I may go after the thing I recognise or which has been pointed out to me without realising that the things I’m climbing on are people’s furniture or that I’m moving around their valued objects. All I’m seeing are shapes and colors. And that brings us to face blindness. I can recognise a neighbor who is leaving their house, but outside of their context, they are strangers, almost everyone is. If I know where I’m to find someone, I can recognise them, otherwise I appear to snub people because I’m afraid of these seeming strangers who grin at me and wave, some even use my name and I’ve never seen them before in my life.
And then there’s inability to process a simultaneous sense of self and other. This one means that whilst in the midst of an action (self) I can’t process the meaning of things, people, interactions around me. People may be speaking but I hear noise and see mouths moving but don’t know they are speaking. I see a big moving thing in my way which won’t move but don’t realise its a human with feelings. I get annoyed at all kinds of obstacles and find ways around them and without an ability to process self and other when in the midst of an action, there is not capacity to even imagine or consider asking for help because perceptually, at that time, no other human exists. I also notice others. I notice them acutely, passionately. I study them. I love people. They fascinate me. But when they speak to me or offer me something they sometimes get no response. That’s when I can find them, but I can’t process my own existance at that time. How much less selfish can a human being get.
Non-autistic humans generally imagine they have empathy. They are subjective and have enough fluent capacity to simultaneously process self and other that they would perhaps rarely see other people in their pure form, without bias, as perhaps only God might see them. Some of these supposedly empathic non-autistic people tutt at me, they attack me, they study me, they quiz me, they wait for me to ‘trust’ them enough to ask for help before doing things, doing anything. They rush me, they watch me, they attribute my processing and perceptual disorders to character faults and then seek to help me learn to ‘get over them’, help me gain ‘insight’ into my lack of empathy. I look into their searching eyes, then look away, because I see only their selfishness and can see they can’t actually see me. Their minds are in the way.
Then I go home, slightly more lonely and alienated, dust myself off for another day and determine to not be scared and to continue to love them. I look in the mirror and their words ring in my ears ‘you don’t look very autistic’.
by Donna Williams
autistic author, artist, screenwriter
Donna,
Thank you for sharing yourself with millions of people. People who are on the autistic spectrum, and people who are not. You have helped an incredible amount of people, including me.
And, sad as it is, you have helped me again just now, because it is good to know you are out there dealing with the people in power who call themselves “normal” and do to us and each other what they claim non-empathic persons do.
I wrote in my blog recently something about I have to learn to accept these persons for who they are, when do they have to accept me, and others like me.
–Ritagail in Oklahoma, USA
Ironically Rita, I’ve taken the time to explain all this stuff to those who’ve just grilled me, drilled me and made my day a rotten tomato. You know what I’ve been told over and over? Most say things like “well that’s just so hard to imagine”.
Yeah, I know, autistic people are meant to be the ones lacking not only empathy but imagination.
It’s easy to see how perceptual and cognitive challenges can give that appearance, but look at the gymnastics it takes for someone like me to imagine and mimic their reality? I’m the blind man talking about colors, I’m the deaf person playing in the orchestra. In the classroom of imagination I’ve got an “A” for motivation and plenty of practice straining my brain to grasp realities which seem surreal and sci-fi which are just their everyday lives.
Such is life.
… Donna Williams
http://www.donnawilliams.net
Hi Donna
I have recently read Nobody Nowhere and Colors to the blind.
Thank-you for shareing yourself.
I have been profoundly affected personally.
I work with an autistic teenager in a school setting.
I hope I can be more sensitive and understanding.
I am very drawn to autistic children .
There seems to be something special about them .
I get to connect with something beyond the mind.
They seem to help me as much as I help them.
Gratefully Nicole
Hi Nicole,
thanks for dropping by.
Like Colour To The Blind was the third in the autiebiographical series
there’s also a fourth
Everyday Heaven
in all I have 9 published books, 4 are text books, 4 in the autiebiographical series, one which is a poetry book.
feel free to drop by http://www.donnawilliams.net
and in case it inspires you with ideas of how people on the spectrum can make opportunities to help themselves also visit http://www.auties.org
I’m glad you are enjoying your work.
🙂 Donna *)
Donna – You rang me a while ago and I have tried to email you and my mail is bouncing back from your server. Check out my website http://www.myspace.com/ausartistautism – I am very interested in Art for a Cause – Hope your exhibition went well.
Katharine
Donna
I misspelt the address http://www.myspace.com/ausartistsautism I have also sent you an email. Let me know if you dont get it.
Katharine
Donna my email address is greylisted on your server which means it thinks my mail is spam 🙁
I am doing well by the way – we just bought a house and move in on Sarturday – presenting a the state conference next week an looking forward to our big 2 day Aspie/Autie event in October.
Dear Ms Donna Williams,
Getting to know about you via the Internet is a great amazement to me. To be honest, I have not yet read much of the things you have written – books, blogs, and others. I, therefore, do not know if you have met many people from developing countries, like myself.
My impression is that autism seems to receive much more attention in developed countries than in developing countries. In my native land – Vietnam and in the country where I am staying – India, it seems that families are struggling on their own or in some parents’ clubs so as to help their kids as much as they can.
As a mother of a three-year-old daughter with a vocabulary of 5 simple words and a doctor’s observation of “having autistic traits”, I am struggling to help my child grow to the best of her potentials, which I strongly believe in. She doesn’t “look very autistic”, it seems, and I would rather take any parenting/bonding/nurturing/or-anything-else blame for her problem than label her autistic incorrectly, especially when I don’t know much about autism except that it is so great a challenge it can prevent those with it from integrating into and appreciating the beauty of this life. But I also know that even if she has autism, she is still, as she has always been, my soul. I believe that my soul is not what I have in heavens after I die, but it is the world as felt and enjoyed by my daughter, as she is the gift that I leave to this world after my own time on earth, my soul.
I have read about those with autism and without language and it hurts me just to imagine. And I know that there are more obstacles to overcome for autistic people to integrate into the world outside them.
Though I try not to let my daughter sense that I am worried, I still feel hopeless many times as I don’t know what to do to help her better. What we are doing now is having a no-milk, no-wheat diet and playing with each other everyday. Would you please tell me from your memories of your childhood if my playing with her can help her develop her language?
Thank you so much for reading this and sharing.
Regards,
Nguyen Thi My Hoa
You are not alone. We’re similar; you wrote my views and experiences.
But I think more people say to me “You need to work on eye contact” or “Toughen up” or “You just don’t get it”… My parents, coworkers, interviewers, strangers, classmates, pretty much everyone but animals, my girlfriend, or good friends.
We autistics must choose company wisely.