NOTE: The blog contains reference to some terms that might be rather upsetting. It is only intended in context for the purposes of the blog.
Ever felt the heady head-spin in being swept along into a situation out of your control? In the world of campaigning, you steadily learn that attitudes and assumptions of what are thought previously of as virtues can actually pose a chance of upset to the people who you might want to champion and furthering the cause where there are other many glaring inequalities in the landscape. When it comes to language, I have perhaps come some distance from the blissful ambivalence I may felt just two or three years ago to knowingly comprehending the enormity which the way we speak and put ourselves across to others can have a decisive role in preserving or altering the manner in which we build ideas. This is none more so true than for autism.
Why should it Matter?
There is no claim that the autism movement has exclusive sensitivities on this rather contentious issue. Within the wider spectrum of disability, there can be little consensus as to what is factually correct. Do we accept ‘blind’ or ‘sight loss’ as the definition of how we regard a person’s condition? Have we managed to accustom ourselves to the ascribing of someone in a wheelchair as a ‘user’ than somebody who is ‘bound’ to it? In my view, the complexity of aligning our vocabulary to be mindful of the constantly evolving phraseology can lead to perfectly innocent mistakes. Even for those of us who have a lifelong condition, we too can be imperfect both about how we understand ourselves and how we might react adversely to others who might be open to learn differently if so offered.
According to Rosemary Frazer, a long-time disabled campaigner and activist, the schism surrounding our internal attitudes dates back over many years and why it is a painstaking mission to bring change at a faster pace than we currently have, noting “One reason why attitudes have been slower to change around disability is that for so long we were hidden away, out of sight. There is also a lack of disabled people in senior roles, politics, business, the Arts etc who are able to speak up and speak out on behalf of other disabled people.”
I believe there are many parallels to be drawn from this observation about how autistic people too have felt the consequences of being left in the shadows for so long previously and the struggle to bring about a complete rethink of our feeling about language now. Barely a decade will have passed since I would have been on the receiving end of ableist abuse, all including the commonplace ‘retard’, ‘spastic’ and so on when in mainstream education. I knew from that early age people deserved far greater sensitivity to their identity, despite the venom which poured from a small number of individuals at a time when I would almost never talk freely about being autistic and not wanting to draw unwanted scrutiny in (as many schools come to represent) a lion’s den.
You might have to only listen to Radio 4’s Archive edition on exploring autism (highly recommended) at the section where a 1970s clip features the bone-chilling question of ‘Why didn’t you get rid of this child?’, directed towards a mother of an autistic child, to know that for generations of those who were/might have been diagnosed that society at large felt we belonged on the rubbish heap. A diagnosis of autism equated to a death sentence and those who were unfortunate enough needed to be kept out of sight. Just a simple question and the thought process as part of our unconscious bias can speak volumes about the understanding or fear we have for the ‘unknown’ to our scope of knowledge.
Us and I
If there was a time when I did awaken to the real grievances that autistic people lament on it was at the Autism Europe congress of 2016 in Edinburgh and as a representative to the charity Ambitious about Autism, I took a small lap around the marketplace of projects and initiatives which were on display for audiences to read. One such feature, from outside of the UK, took my eye in particular. The offending description judged some of its beneficiaries as ‘severely handicapped’. I felt an instinctive dismay at how such derogatory references could exist and simply had to share the disgust with the world on Twitter. Was I perhaps imposing my own standards about how we express language to another state that might not share our values? That might have to be conceded, but this was a pattern that we are somehow seen as lesser by the notion that some who are autistic are not able to verbalise and express their own thoughts in the orthodox structure of communication, but those who could are not sufficiently autistic to know what it’s really like.
Now, it would be wrong to leap to the conclusion I have in some way become militant or obsessive about checking on people’s faults about choice of words. There are many burning challenges, whether it is health or education, which warrants particular attention to make concrete changes. However, if services and support in various forms of our quality of life represent the branches, than the underlying roots push from the way which factors like language and misguided beliefs (e.g. cures) are impacting upon the overall picture of how we understand our place in the world, as well as the conditioning of society as a whole.
One source of tension lies in how autism is held towards our own personal identities, where autistic individuals, parents and professionals express diverging preferences of how we judge it by the context of its importance. In one piece of research conducted back in 2015, the feeling that being viewed as an ‘autistic’, ‘autistic person’ or even ‘aspie’ as opposed to a person-first reference like ‘person with autism’, which is the common refrain for most professionals. Consider it this way — being ‘autistic’ is inherent within us and not being something which can be extracted or overlooked — it is one and the same thing as the individual. A ‘person with autism’ is that which we should be included within the shared normality that exists within the neurotypical domain, despite who they are. While not outright discriminatory, it does not aid the shift in how we have charged ahead of that mindset. Why only accept the ‘normal’ that is thrust upon us at an early age or settle for whatever is ‘despite’ about the essence of our identity?
For campaigner Ashley Stephen, it was a case that autism is not a spare part that is mysteriously outside of you somehow, who argues “In regards to preferring to refer to myself as an autistic person, a huge portion of that is because autism is so much apart of my identity and how I view the world, that I can’t remotely imagine who I’d be without it — a feeling I’ve noticed seems to be quite common in our community. I’m not “with” autism. It’s not like it’s driving alongside me in a car.”
A New Beginning?
There would be a terrible naivety if I asserted that we, as autistic people, are wholly supportive by approach and unanimity about what belief system is correct — you only have to browse some of the debates on Twitter for that! For my part, I’ve changed how I would construct my presentation about how I convey my own sense of responsibility, but for how others will perceive what autism means to them. It is about being open to know how you can serve the cause in a more constructive manner that a subtle difference in tone can go a long way.
Additionally, I know both autistic and non-autistic people might be comfortable with their own way in which they see themselves and treading carefully whether that needs correcting. I come across autistic folk who are content on using ‘high/low-functioning’ and, no matter how reductive or crude that feels, admonishing them at that moment may only be counter-productive in the long run. For many women who are diagnosed too, the autism vocabulary has long been occupied as a male dominated space which has been all too slow to accommodate a wider network who has been underserved for as long autism was first coined.
There is (typically) no right or wrong — only learning and progress. You achieve change best by informing those who have an inclination to listen and reshape the world to be a neurodiverse setting by adopting language that should be available to all.
Last word now to Jon Adams, an artist, poet and autistic campaigner who explains why language is a vital hinge to the way we are understood:
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?
Yes, we are all different, an incredibly positive and enriching thing and for me confirms the fact we are all just simply human.
N.B. This is an extract from an extended piece by Jon about the role of language and its relationship to autism. You can read it in full here.