Generally, if you use the term ‘suffer from autism’ a lot of Autistic people – myself among them – will react negatively. The idea that Autism of necessity causes suffering doesn’t quite align with ideas of Autistic self-advocacy ad neurodiversity. The other day a colleague asked me the question which is the title of the piece: ‘Do women with Autism suffer more than men?’ I get asked a lot of odd questions from neurotypical folks who I understand do not share my detailed and nuanced understanding of all things autism – I mean, why would they? So while my instinct in relation to this question was to get into argument mode, in fact I found myself stepping back and trying to understand there the question came from and what information would be useful to convey in response.
I answered my colleague as best I could, trying to convey the Autism is a different approach and not a tragedy. But the question got me thinking about autism and suffering, not in an ableist sense which might suggest parents of autistic children should just give up on their child now, or the idea that if autistic people do not behave or communicate in the way neurotypical do it must be some ind of tragic failing. Instead I turned it in on my own experience of forty-two years as an Autistic person. Do I ‘suffer?’ If so how? Does Autism itself result in suffering or is it something added by others who have no understanding of me or my autism?
These are some of the conclusions I reached:
- My autism is neither negative nor positive in any absolute sense. It is simply an attribute. The perceived negatives and positives around my autism are things which are strongly influenced by the responses of others to me. In its essential state my experience of face blindness (which while not exclusive to Autistics is experienced by a lot of us) is neither here nor there. I can’t remember faces and I can’t remember the ISBN numbers for my books. On paper these are both things I simply can’t remember but in a world full of people who expect me to remember their name and their face, then face blindness becomes a negative. It also makes me anxious around seeing people and worrying I will not recognise them and be ostracised for being considered weird or highly rude. What makes my inability to recognise most faces a deficit is that it is different form most other people, and any suffering attached relates to difference between others and me rather than an innate flaw.
- Before Is started school I was confident. I liked myself and thought I was a good person. Thirteen years of being bullied and excluded in places where education was supposed to occur left me not only lacking confidence but also filled with negativity and self-hatred. I still suffer from the insecurity and anxiety when I am around groups of school children, over twenty-five years after I finished school. I didn’t do anything ‘wrong’ at school but I was singled out as being different and I definitely suffered as a result.
- I am naive. As a teen and young adult this was dangerous. My naivety was not a deficit in the scheme of things and the only reason I suffered from it, and suffered greatly, was that predatory people took advantage of me.
- I am a perfectionist. There is certainly suffering within that. But dig beneath the surface of my perfectionism and it comes fro a fear of failing after I lived through high expectations as a child. Perfectionism for me also came from a place of needing to prove myself in a world which evidently didn’t think much of me. It was also a way of controlling the more unpredictable nature of the world and those inhabiting it. If I could control how well I did on an exam it seemed to help me address that uncertainty around the other things going on in my life.
- I have spent much of my life high anxious and fearing things – the supernatural, fire, nuclear war and severe phobias like spiders and unaccompanied dogs. Fear has been a constant, unwanted companion my whole life. My first memory is of a recurring nightmare and in my childhood I spent hours each week praying to God not to have a nightmare. The unpredictable nature of my nighttime brain was almost as horrifying to me as the nightmares it could produce. As I went through childhood I was given messages from all sorts of places that my fears were meaningless and I was being annoying. ‘The spider won’t hurt you Jeanette.’ ‘Don’t be silly ghosts aren’t real. You’ve been watching too many scary movies.’ those sorts of things. I found that having my anxieties and fears invalidated made them considerably worse as I felt I had to manage them all alone. After a lot of adults dismissing my anxieties an fears I gave up telling anyone about them. This contributed to an unhelpful attitude towards seeking help that I still have today. Had adults understood the nature of my fear they might have helped me manage it rather than being dismissive.
I’m sure you have noticed something among these ‘sufferings’ related in a greater or lesser degree to my autism. They were either created or exacerbated by the actions and words of people who wanted to take advantage of me, hurt me or just plain didn’t understand my approach to life.
There is a flip side to this rate negative picture of the world: If you look at my own life and the suffering involved, consider what might have happened if bullying had been effectively tackled or if predatory people hadn’t abused and damaged me. A world where I felt confident enough about myself to not be bothered by failing at something or needing to be a perfectionist? I believe that world to be possible and it is the focus of a lot of my advocacy to help create a supportive world where Autistic people do not have to bear this huge load of discrimination, dismissiveness and invalidation. Most of the suffering we experience as Autistic people navigating the social world can be seen as preventable. To address it maybe we can widely promote the notion that our Autistic different is not less, help Autistic people to value themselves and fight discrimination with pride and knowledge and to encourage the structures in society to be Autism competent and confident. Suffering for Autistic people is far from inevitable. Yep, let’s do the changing the world thing.