If there’s one thing we humans love, it’s a nice and easily defined category.
Unfortunately, modern science teaches us that virtually nothing exists in a nicely defined category. The same is true for autism.
And forget categories for a moment, we lovely humans (broadly speaking) are seldom able to settle on what language to use, which words mean what, and whether we each have the same understanding of something.
So, how should you describe the autistic person in your life?
Here are some things you might like to know surrounding the language of autism to start with
1: We get to decide what we call ourselves/how we refer to ourselves as individuals. Respect that.
2: If you want to refer to us as a group, you have many options! Autistic, Asperger’s, Aspie, Autie, on the spectrum. Autism/autistic spectrum is a great catch all!
2b: If we use a word to describe ourselves, don’t tell us we can’t, or should use something else. Or, you know, take your chances. Have you ever told someone with demand avoidance (like me) what they should and should not do related to their own autonomy?
3: If you are not autistic, you don’t get to tell us what we as a group or community prefer.
So when we say approximately 80% of our community prefer “Autistic person” maybe you could respect that? If an individual wants to be referred to as a sparkly aspie rainbow unicorn, use that for that individual. For a group, see above, or just use “autistic”
3b: Please don’t, if you are a non-autistic service provider, try to be negative about *my* use of autistic to refer to me and the wider community by saying some people don’t like it. Just…No.
4: And, OK, there are some people who don’t like it (maybe for themselves or their young person). If you don’t like it, can I ask: How come?
It is the most succinct and accurate word, recognises current definitions of autism as a neurotype/condition and is the one that has been in consistent use since first definition.
Why do you dislike a word? Is it perhaps the connotations that go with that word you dislike?
Onto a broader language matter – is autism a disability?
Short answer, yes. This yes can be argued from either the medical or social model of disability.
If you’d like to argue that autism is not disabling because [insert reasons] then can I ask you again…
What’s wrong with disability? Why do you dislike that word? It simply is what it is. Does it make our lives harder than typical sometimes? Absolutely. But it’s not a bad thing in and of itself.
So, like, what IS autism though? What does that mean? What does that mean from the perspective of diagnosis, identification, neurological functions etc etc etc
Let’s take a look at some different ways autism can be, or has been, conceptualised to start understanding it.
1: A neurological movement problem
Most autistic people experience some degree of what’s called dyspraxia (difficulties with orchestrating bodily movements, especially new or unexpected ones). This can range from the extreme – huge difficulties with planning, initiating and carrying out movements – to a general, excessive clumsiness
2: A sensation and perception problem
Most autistic people experience sensory/perception sensitivities and/or reduced sensory sensitivities to some stimuli and/or may seek out extremes of sensory input.
Examples include extreme sensitivity to light, sound, textures, tastes and smells, temperature changes, inaccurate time judgement, either acute or very limited perception of certain stimuli, sensing and processing emotions, both internal and of others.
3: A specific learning disability for social norms and cues.
As an undergrad, autism was grouped alongside specific learning disabilities such as dyslexia and dyscalculia because of this aspect. It’s definitely a way to conceptualise it, but we now understand that the social aspects are more related to the complex sensory processing aspects of autism.
4: An intellectual disability
Autism itself is not an intellectual disability. It can occur alongside intellectual disability. Autistic people – especially non-speaking individuals – may be categorised as intellectually disabled due to the nature of the testing. Intellectual disability can indeed cause real struggles for people living with them. Also keep in mind that IQ testing is basically a big, racist, ableist scam designed to again, put people in categories with value judgements placed on them. About a century ago we decided to categorise children for their education purposes, and now we use it to demean approximately 15% of the population.
We all love a good category though.
5: A behavioural problem
It’s such a shame that autism was described in the age of psychology that it was. It was the time of BEHAVIOURISM (big spooky ominous voice).
Now, the basic premise of behaviourism is OK. Basically it runs that behaviours are what we can observe in an organism (human or otherwise) externally. As (in science) quantifiable phenomena must be observable, we must quantify and measure behaviours.
And then make assumptions about the internal motivators of those behaviours. And here is where massive biases were introduced to psychology.
An example: I see a person eating large amounts of food, rapidly, as though they are inhaling it instead of chewing and swallowing.
A behaviourist would come to the obvious conclusion – this person is extremely hungry. Which may be true, but internal motivators for this behaviour could also be…
a) They only have a short lunch-break
b) They are in one of those american food eating competitions
c) They are engaging in a binge, possibly associated with disordered eating
Sorry, fellow behaviourists, behaviour is not equal to what motivates the behaviour. And if there’s one thing I can say with certainty, from both a lived experience of autism and as a behavioural scientist it’s this:
Allistics make poor assumptions about the underlying motivations for our “challenging” behaviours every day.
After all of that, are you any less confused about what autism is? No? Me neither, friend.
Frankly, I don’t think anyone’s got a good explanation yet. It’s all of those explanations above and more.
It’s a complex neurological variant or neurotype.
Those with this neurotype are typically identified by…
- Intense interests
- Sensory/perceptual extremes
- Engagement in repetitive movements (Stimming – a form of self-regulation)
- Difficulties with speech – production and/or reception – which may be long-lasting or change over time periods/with environment
- Difficulties with faces – recognising, remembering and peceiving them
- Difficulties with controlling bodily movements, and/or making judgements about where the body is in space (this is a sense called proprioception)
- Difficulties with executive functions – attention, short-term memory, planning ahead, motivation, decision making, initiation of tasks, hyperfocus, inertia.
See how complex? That’s not even an exhaustive list or description. And because autism is a spectrum condition, we can exist with any combination or variation on these traits and others.
We may also learn over time to better regulate some traits. Example – when I was younger I apparently spoke in a monotone way and was told as much and not to do it. I have learned over time to fluctuate my tone of voice more appropriately and have better control over the volume of it. Mostly. I’ve also worked with other people with more extreme difficulties with this – especially in the volume department – than I ever had when I was younger.
SPECTRUM.
Broadly it seems the experience of autism is defined from the outside. About us instead of with us. Done to us. Here are some ways I’ve been described…
Difficult to deal with; Poorly behaved OR extremely well behaved (because it depends on both the environment and my internal state, see?); Cold; Aloof; Weird; Nasty; Overly Sensitive; Forgetful; Lying; Lacking Empathy.
Internal realities and experiences of the world are very different to the behaviours seen externally though. What if we defined autism based on our authentic selves?
Determined; Fun loving and curious OR inert and sitting quietly with the storybook in my head (depending on environment plus internal state); Anxious; Uncertain; Unique; Misunderstood; Overwhelmed and surprised by the occurrence of my own emotions; OK, I am actually forgetful, please allow for my extreme executive function issues; Unable to cope with eye contact; Filled with so much empathy I have to disengage, or I missed your indirect non-verbal cues.
What’s on your authentic autistic list? Generosity? Compassion? Subtle comedian? Share with me
Until next time,
Twitter: @neurosquared
Instagram: @doctorsooz
Neurosquared 