Talking the Talk

Talking the Talk

This is probably going to be my longest post yet – explaining, as best I can, some common terms that might be confusing to a newbie… (reminder: I’m still a newbie myself!)

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My official diagnosis is “Autism Spectrum Disorder (ASD)” but I will use Autism because it’s shorter. When I’m referring to me personally, I will likely use Asperger’s and Autism interchangeably – if I had been referred to a doctor a few years earlier I likely would have been given Asperger’s as a diagnosis. 

Technically, Asperger’s has now been discontinued as a possible diagnosis in America, and is likely to be discontinued soon in England too. New patients are given ASD as a diagnosis, with varying “severity levels”.

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“Neurotypical” (“NT”) and “NeuroATypical” (“NaT”).

First, let’s check out Google’s definition:

neurotypical

adjective

adjective: neurotypical; adjective: neuro-typical

not displaying or characterized by autistic or other neurologically atypical patterns of thought or behaviour.

Oh. Well that wasn’t helpful. Lets see what Wikipedia has to say instead:

Neurotypical or NT, an abbreviation of neurologically typical, is a neologism widely used in the autistic community as a label for people who are not on the autism spectrum. However, the term eventually became narrowed to refer to those with strictly typical neurology; that is, people without a defined neurological disorder.

In other words, this refers to anyone who does not have any developmental disabilities such as autism, developmental coordination disorder or ADHD. The term was later adopted by both the neurodiversity movement and the scientific community.

In recent times, people with any sort of mental disability, whether congenital or acquired, have also been excluded from many uses of the neurotypical label. In this sense, the term is now contrasted to neurodivergent, ND or neuroatypical, an umbrella term inclusive of people with diverse mental and behavioral disorders, such as mood, anxiety, dissociative, psychotic, personality and eating disorders.

 So basically Neurotypical is anyone who regards themselves, or is widely regarded as, “normal” and neuroatypical is…. everyone else. 

 

 Kinda feel like we’re in the majority here. 

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There are a lot of phrases people within the Autism community use to describe what place on the spectrum they are at, and some people take offence at some of these phrases. For example, “high/low functioning”. 

At first I described myself as “high functioning” – I’m married, I have a job, I am verbal, I am literate, I don’t stim too obviously – but it always grated on me. I don’t always feel high-functioning. In fact, some days I barely function at all. For this exact reason a lot of people don’t like high/low functioning nomenclature. 

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“Passing”. This is both difficult and easy to explain, especially as so many of us (especially the women) don’t even realise we are trying to do/actually doing it. 

Passing refers to be able to present (“pass”) as a neurotypical individual. Sounds simple enough. But so often a lot of us don’t have a firm grasp on what we are actually doing wrong, or on what other people are doing right. We don’t know how to stand correctly, how to make our face do the thing that indicates sarcasm (some of us can’t do sarcasm at all – I can sort of hear the accent/tone of sarcasm, but the facial expression eludes me), how to walk and talk correctly, how to sit still… and then some of us are able to do all of that, and pass so convincingly that they have trouble convincing anyone that they’re struggling. It’s a double edged sword.

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Another example of this is the debate over whether we are “Autistic People” or “People With Autism“. To be entirely honest I don’t understand all the reasoning here, and therefore I haven’t decided which camp I fall into yet.

The issue is very complex, so I’m going to leave a bunch of links below, but as far I can tell a huge part of it comes down to whether you can separate yourself from your autism. 

If you want to value the identity of the person separately from the condition (condition? disorder? disability?) then you say “person with autism” but some people worry that this somehow means that people have value despite the autism, and this implies that autism is somehow devaluing people, that autism is a bad thing… That people will want to cure it because you said “person with autism” rather than “autistic people”.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin. 

When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease. 

The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as “a silly semantics argument” denies the power of language.

I don’t know. Language is undeniably powerful in shaping people’s thoughts but I struggle to follow that chain of logic.

Some people also feel that Autism is an ingrained piece of their personality, so much of a part of them that they don’t want to be separated from it. Which is a personal preference. 

As I said before, the other side of the coin is person-first language, which separates the person from the Autism.

Person-first language is a philosophy of putting individuals before their disability. As you will see, this is about more than just language; it goes deeper into our attitudes toward others and how those attitudes translate into action. 

 ….and as far as I can tell that is the extent of the reasoning. 

To be honest, I find the person-first argument painfully thin. Usually that would incline me to agree with the other team – but although they’ve clearly thought out their reasoning a lot more (not that the person-first camp haven’t thought it through, but I can’t find any in depth arguments from that side) I just don’t agree with their conclusions.

So for now, until I come to a conclusion, I’m just going to use whatever flows better in writing.

Here are those links I promised:

Here is a very practical guide on how to refer to people (but basically – what do they want to be called?)

 

This person covers both sides of the debate in depth – so much depth, in fact, that I struggle to determine thier thoughts on the matter. I think they fall on the “autistic person” side of the debate. 

 

This person and this person are undecided/don’t care

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Let’s end things on a simpler note: Spoons. If you’re reading autism blogs for the first time you might keep running across lots of references to spoons. “I was going to go out but I was running low on spoons,” or “I just didn’t have enough spoons for that” and so on and so forth.

It can be confusing if you’ve never heard of spoon theory before. 

So, to quote directly from the Wikipedia Page:

The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

Sounds simple enough. Even neurotypical people run low on energy sometimes.

One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses do not need to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people to get through the day.

Certainly for me, the activity in which I am most likely to run out of spoons is socialising. It’s the hardest thing I have to do because of the effort of trying to “pass” as a NT. Hopefully with my diagnosis in hand I’ll be a bit kinder on myself about passing, now that I know that it’s not my fault, but it’s never going to be easy for me. 

 

On the days when the depression is kicking my butt even getting up needs a spoon. Showering needs a spoon, getting dressed needs a spoon. This doesn’t happen every day, but often enough. No healthy NT would struggle with that. They wouldn’t understand why “I was dressed all day, and I walked the dog, and I sent off a job application” was a good day and cause for celebration. 

So that’s spoon theory. I said it would be a simpler one 🙂  

 

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