I grew up loving words and their meanings. From a very early age they gave me the means to quantify and describe an often puzzling world that spun around me. Sometimes this was in an unchosen silence, unable to share when I couldn’t cope with the outside world, an internal pleasure just for myself. Being synaesthetic I often found these descriptors were pale shadows of reality or just didn’t exist so I invented my own and appropriated others. Also a child I was continually asking questions about the meanings of things and secretly building this fragmentary detail into my own bigger picture, a ‘world’ taxonomy that would come in very useful later in life. To me as a child, language meant life.
I’m not saying it was all plain sailing as my ability with language and word lead to issues at school. Whilst I could answer questions quite eloquently when able, my written work was poor and I often often opted for words I could simply spell rather than those I really needed. I was often called stupid or I would hear the word ‘lazy’ used. (actually I’m just dyslexic and autistic and it was never picked up.) I sought solace in nature and especially geology, becoming a palaeontologist – stones don’t lie or let you down.
One day aged 11, my teacher tore up one of my pictures up in front of the class because I spelt my name wrong. What cut me even more than the loss of a single image was the fact that he said ‘I would never amount to anything’. That day my dignity and dream of becoming an artist died. I learnt that these precious things called words could hurt and that ‘sticks and stones may break your bones but words will never harm you’ was a complete lie.
It also caused trouble in the playground because as a teacher had humiliated me ‘with words’ it had seemed to give permission to my fellow peers to do the same and some did with glee. What I really hated though was that I felt misrepresented, that they hadn’t given me a chance to prove myself or my ‘inner me’ that I soon learnt to keep hidden. I knew I was different and so did they. Oh and by the way I don’t have a normal person inside me longing to escape my inner me is 101% autistic.
Language can be either heaven or hell, and for people who don’t seem to fit a society or are different, it may become a clear and present danger. If something is said again and again and again even though it’s untrue or a stereotype or a misrepresentation it soon may become an ‘apparent truth’. Words can be used as seeds to engender hope within a single person or as a seed of desecration, repression and othering in preparation for the loss of generation. History has shown us where relatively simple words of hate can lead. One powerful group in a society deeming ‘others not human’ and ‘useless’ thru the media or policy. We should remember this every January on Holocaust Memorial Day for example.
Mostly I don’t really have an issue with the word autism but I do have a problem with the way it’s often used. Until we change the traditionally used wording towards autistic people to the preferred language used by autistic people, the stigma and othering I feel will not stop. I don’t ‘live with autism’ for a start, I actually live with my wife and two cats. I didn’t ‘acquire autism’, it’s not a handbag or a pair of shoes. I don’t ‘suffer from autism’, I just have to suffer the attitudes of people who seek to misrepresent me or plainly don’t understand the harm they cause us. I do however live with and suffer from PTSD caused by poor attitudes towards me as an autistic person.
It’s very easy to seem comic, flippant and literal about these things but language engenders attitudes and attitudes engender the way you accept or reject people. I’m not a person ‘with autism’ I’m an autistic person. It’s not separate from me because that suggests that I can lose it, cure it or rid myself of it. What’s worse is it implies that others can do this to me. language Imposed on any other minority would be seen as unacceptable so why does it seem such a ‘free for all, towards autistic people?
I personally feel that that the language used towards us should be driven by autistic people, ‘our language our narrative’. I also feel you can tell the attitude of an organisational or individual towards autistic people by the language they seem to use. If an autism organisation doesn’t listen to the voice of autistic people and carries on using language that we may find offensive that simply says ‘we don’t care about your opinion’. Do we need organisations ostensibly for autistic people who don’t care about our opinion?
I also really dislike the way some come back at autistic people who choose to use identity first language with a ‘cancer’ argument. I won’t say much here other than it’s not acceptable and is I feel disrespectful to all concerned. We are talking two completely separate things here. The analogy is incoherent and again shows a lack of understanding on behalf of the people who use it.
I feel there is also a lot of misunderstanding around the use of the term neurodiversity and it seems to be becoming a bit of a buzzword without people really understanding it’s taxonomy. Neurodiversity encompasses all of us like biodiversity does the life around us on this planet.
A single animal cannot be described as being biodiverse, a cat cannot be everything at once but it is part of biodiversity. likewise a single person cannot be neurodiverse as they can’t be both neurotypical and neurodivergent at the same time. However a group of people can be neurodiverse just as a specific population of flaura and fauna can be biodiverse.
People often ask me what’s the biggest change we can make towards autism acceptance or understanding and I say it is modifying the language that people use towards us. And after that they need to except that they don’t understand what goes on in ‘our heads’ and listen to what we need not what they project on us, double empathy. Both these go hand in hand. If an organisation refuses to listen to autistic people and won’t change their language or perceived attitude then they’re not an ally, in fact they’re part of the problem. Conversation between all sides is so important as we won’t obtain autistic ‘emancipation’ without all agreeing but that needs a common language.
I don’t need modifying to be a part of our society rather than apart from society. I just need accepting the way I am, something that seems incredibly hard for some people to get their head around. Society should be made ‘fit for us’ not for us to have to ‘fit in’ with society’s wishes or traditional stereotypes and misinterpretations. Society really should except and embrace difference, along with the self-descriptive language chosen by any minority’s concerned.
Yes we are all different, an incredibly positive and enriching thing and for me confirms the fact we are all just simply human.