An article by Alice Jorden, an autistic writer.
If you were to look for quotes about autism, one of the ones you may find is this one by Chris Bonnello, Autistic Not Weird. “People argue about whether to call me ‘high functioning’, ‘mildly autistic’ / ‘a person with mild autism’, an ‘Asperger’s sufferer’, or ‘someone with Asperger’s and or Autistic spectrum disorder level 1.’ People are strange. Because I actually prefer ‘Chris’.”
But it’s true. People are worried about to define an autistic person, about which name to use. But what purpose does a name (or label) really have?
The word autism stems from the Greek word autos which means self. In essence, I agree with this. I think autistic people are quite often their own person, somebody who knows themselves. The Maori word for autism translates as ‘in their own time and space’. Again, somebody who does things in their own way.
But it isn’t just called autism. The diagnostic manual gives it a complete name of Autism Spectrum Disorder. No wonder Chris prefers Chris. The problem with spectrum is that the dictionary defines it as a range between two extreme points. The British apparently love discussing the weather so if we took temperature as a spectrum, it would range from the coldest recorded temperature in the UK and the hottest. That works. But what are the two extremes of autism?
It doesn’t work. Extremes have to be quantifiable, but you can’t quantify something so individual, so extensive and so unique. People who wrote the diagnostic criteria tried. They used the general population as one extreme (so called mild) and the other extreme as autistic individuals who they couldn’t reach (so called severe). Please note I said who they couldn’t reach, these people are not unreachable, it’s just nobody has entered their world yet.
But autism isn’t like that. To me, Autistic individuals are more like snowflakes. Snowflakes are unique. No too are the same. Each snowflake forms from the centre outwards and as each crystal grows, numerous variations are possible each time it splits. This recognises the uniqueness of autism and stops labelling those who feel they have to mask their autism as mild, and those whose amazing world is yet to be reached, as severe. The problem, especially with mild, is that the challenges of being different and trying to fit in when you can’t face being the odd one out, are taken away from you. It’s only mild autism, you don’t need adaptations!
The last word however is both insulting and amusing in equal measure. Disorder. The prefix dis- implies negative. Disproved, not proved. Dissatisfied, not satisfied. Disorder. Not ordered. In our everyday lives we see signs on broken objects saying out of order. In other words, broken. I am not broken and I dislike the implication that I am anything other than what I should be. Would I like my environment to be easier? Of course. But that doesn’t mean I am broken.
Seriously though, disorder? Many autistics love order – it’s even on the list of symptoms those who called it a disorder created. Many love patterns, love rules, like routines. Isn’t it a little bit hypocritical that non autistics, who are apparently less rigid thinkers, give autistics a name that includes the word disorder?
But that’s part of the problem. At birth, people are given a name. In my religion, this name is part of baptism too. It’s important. While there are people with the same name, names are part of our identity. Whether I agree with the term autism or not, autism is part of who I am. It is part of my identity and I’m proud to have a name that likens me to extraordinary people I like and admire, both personal friends and more famous individuals.
But is it really a name? Or is it a label? Autistic people are different, even young children can recognise somebody who is different or that they themselves are different, but that wasn’t enough. Instead, they had to be defined. Lists of symptoms to check off against. At this point, non-autistics created two distinct groups. Us and them.
Now there is a counter argument here. I hate it when non-autistics say they are a little bit autistic. Now, if this was said because they genuinely felt they shared some commonality or even said it because they wished they did, it would not create such intense feeling within me. But often it is said as a way of dismissing problems autistic people have to face. Being autistic is hard work. Society has been created by non-autistics and suits them, which means as an autistic individual you are constantly trying to navigate around a world that doesn’t work for you. A world where people say things they don’t mean, create lots of simultaneous sensory experiences and create rules designed to be broken.
But why name autism in the first place? If you take the kindest reason, it would be to help. Now don’t get me wrong, being autistic is hard and if people are willing to make adaptations to environments and communication, I am grateful. I can also see, that by giving people a label, it does allow non autistics the opportunity to make these adaptations.
The other issue is, by using one name for people who are unique, stereotypes are created. Stereotypes are assumptions about the whole based on limited knowledge, like assuming every autistic person can’t do sarcasm. If you know an autistic person and want to help them in a confusing world, the best thing you can do is get to know them as an individual. Talk to them and spend time with them. But surely that is what friendship is about? You know your best friend doesn’t like ice cream, not because they are labelled a non-ice cream liker but because you have spent time with them and listened to them.
In medicine, we name conditions to help doctors treat it. We name other conditions in order to cure them. But autism isn’t medicine. It’s not a virus or infection we need to kill. It’s not a broken part. The term means self. Being yourself. Why would you want to treat or cure that?
And that’s the problem. Even now there are organisations looking to cure autism. Cure those people who are not like themselves. Cure those they divided away from. Cure those who aren’t normal.
Yes, the word I hate most of all. Normal. Well, actually, I don’t hate it. But while many people think being abnormal would be awful, I am so grateful I am not normal. A dictionary would define normal as conforming to a standard. Yes, conforming. If I think about people who conform, the armed forces come to mind. People who are all expected to act in certain ways and follow certain rules. Nobody in the army was born a soldier, they were trained. So, are people born normal or are they just conformists?
Before anyone asks me, ‘what is the problem with conforming?’, I will say some conforming to expectations and standards is necessary for a peaceful society. We live by laws and use manners. But we are also individuals, and where that individuality does not cause hurt, squashing it from somebody is wrong. You can call it socialising, a cure or anything else. But it serves no purpose other than wanting everyone to be the same. A man rose to power in 1933 wanting everyone to be the same.
In recent years another term has come to the front neurodivergent. To diverge is to differ and I’m okay with that. Before I’d ever heard the word autism or autistic, I knew I was different. Everyone is different and for whatever reason, I didn’t conform to the expected standard, thank goodness. But on the flip side of neurodivergent is neurotypical.
While normal has connotations of being right and not normal is seen as wrong, typical refers to how common something is. For example, the air we breathe has many gases in it. Nitrogen makes up the majority of the air but it isn’t the nitrogen we need to breathe, it’s the oxygen. However, if you could pull a single gas from the air the probability would be you’d pull nitrogen. And so with people. A truly random selection of people would be higher in proportion of neurotypical people than neurodivergent.
But so far, non-autistics have been the ones naming and labelling us. How do they now feel about our name for them? One non autistic I spoke to, disliked the term neurotypical. They said it created an ‘us and them feel’. I don’t disagree, but this isn’t new. From when non-autistics first labelled autism, it divided us. But to name something is to call it out as different. Now neurodivergent people have their own label.
Neurodivergent isn’t only autism. As well as being autistic, I also have ADHD. However, I’m not going to discuss that name. Apart from using both deficit and disorder in one diagnostic name, it doesn’t even describe the difference in my brain and thinking at all. I wish attention and hyperactivity were the biggest differences, but they are not. That, however, is another discussion.
My name is Alice.
You can call me autistic, but I prefer Alice.