The first thing that needs to be covered is the fact that autism, and its associated word forms, are a taboo. No one really wants to talk about it, it’s just not something that’s covered, which is simply ridiculous to me. Taboos attempt to keep some form of order in society but they just prevent healthy discussions on important topics that could make a huge difference to our lives. A lack of taboo around autism? I think it would lead to wider acceptance – and that’s hugely important.
The best place to start, in an attempt to break down the taboo, is to define and begin to understand what autism is. This can be difficult, however, as it’s a spectrum where everyone has a different experience, but I wouldn’t say this is the main issue. A problem we have is that a lot of the definitions we see come from people observing autistic people, in a traditional medical environment, instead of the autistic people themselves. Autistic people are the best resources for anything to do with autism.
I have two favourite definitions, both coming from groups that work well to support autistic people. One of them comes from ASAN, the Autistic Self Advocacy Network, which calls it a ‘neurological variation’. The other comes from the National Autistic Society, or NAS, who say it’s a ‘developmental disability’. I tend to use the term ‘neurodevelopmental disability’, which encompasses both and describes what autism is for me.
I think breaking apart these words will help get a better idea of what they mean, even if that can be obvious. When we say neurological, we’re talking about the brain, while variation is perhaps a newer term in terms of autism. It has been suggested that autism is more of a healthy variation of the brain than a disorder, which is something I completely I agree with. I wouldn’t really say my life is disordered, it just varies from 99% of the population. On to the NAS definition, developmental means it begins during development and persists throughout life. However, the word disability, for some, is a bit more complex.
It’s a word that’s pretty much as taboo as autism. To some people, it’s surprising that the term disability is used, but it is. Some people, perhaps in an attempt to feel less awkward using a seemingly taboo word, try to say things like “You’re just differently abled, or challenged!”. Those kinds of statements seem to apply to people with all sorts of disabilities, so some go for “You’re autistic, not disabled!”. The problem with this is that disability is talking about impairments and difficulties, which to me are relative to the world around us. The things that make me autistic only become disabling in a world built for abled people.
As a quick example, I struggle with different sensory experiences. The world is generally too loud and too bright for me. Walking alongside a road can be difficult because cars make a lot of noise! It’s not necessarily the concern of car manufactures to make quiet cars, when they can be making fast and expensive ones that’ll sell well. What I’m getting at is that if the world was built for me, I’d definitely struggle less, in a similar way that wheelchair users would struggle less is every shop was completely accessible in a wheelchair. Not everything in this world is accessible, so we’re disabled and unless something drastic changes. However, I’m not too sure where the dimmer switch for the sun is, so I’ll keep using the term disability for a while.
This discomfort born from the taboo means most people don’t actually understand what autism is. To be fair, I didn’t really know before researching to see if my therapist could be right. Sure, I knew of a few autistic people, but I wasn’t too sure what it actually meant for them. Autism is described as a spectrum, so it’s naturally different for everyone, but it generally means issues and difficulties regarding a few things:
- Atypical movements, often relating to self-stimulatory behaviour
- Hyperfixation, including special interests
- Routine and issues subsequent changes
- Social interaction
- Atypical sensory experiences
(The list above is inspired by the one from ASAN, which can be found here)
Atypical movements, often relating to self-stimulatory behaviour and atypical sensory experiences
I’ll start with the first bullet point and last bullet point as it’s hard to detach them. I’d be willing to bet most people reading this are confused by the term self-stimulatory behaviour, but as it’s such a key part of like for most autistic people, it’s important to understand it. The autistic community use the word ‘stimming’ to describe this. Quite simply, it’s repetitive movements, completed with the aim of calming and/or stimulating the senses. You’ve probably seen this kind of harmless behaviour, often portrayed in a negative light. It ranges from hand flapping and rocking to repeating words or feeling a piece of cloth with a wonderful texture.
Autistic people tend to be hypersensitive or hyposensitive, with the former meaning ‘over’ and the latter meaning ‘under’. We often have a condition, that comes along with being autistic, called Sensory Processing Disorder, or SPD. It means exactly what is looks like – trouble processing sensory information. This relates to stimming in two main ways – hypersensitive people will usually stim to calm and regulate themselves while hyposensitive people will try to receive more sensory input.
Early on at school, we learn about the five senses, but we actually have seven. The five you know about – touch, taste, smell, noise and sight – are joined by two others. These are called vestibular and proprioceptive. Proprioception is basically where you and your body parts are within the space you occupy and this in relation to things around you while vestibular is to do with your movement and balance.
The best way to demonstrate what the senses mean for autistic people is to look at specific stims and related them to the senses. I’ve picked more positive stims for these examples, and all the stims are ones that I regularly do.
||Feeling silky fabrics
||Eating a favourite food (for me, chocolate!)
||Smelling a nice perfume
||Clicking fingers to hear the sound
||Rocking back and forth
||Pressure, using something weighted
Autistic people can be working to keep their body balanced – for example, I might need ear plugs to block out additional, and somewhat painful, auditory input while also be rocking to gain vestibular input.
Another way autistic people stim is to use stim toys. These are often seen as ‘fidgets’ or ‘things to fiddle with’ in a way to achieve sensory input. Pretty much anything can be a stim toy for us. Some can be brought for the specific purpose of stimming, like plastic tangles or the fidget cube that become popular recently, while others could be things we had lying around, an offcut of fabric or a hairclip. All of these things are stim toys as they help an autistic person stim.
Communication and social interaction
The second bullet point was communication – autistic people often struggle with communication in all manner of different ways and for several reasons. I’m going to attempt to explore are the main ways communication can be a struggle for autistic people.
The first one is verbal communication. Some autistic people struggle with verbal communication, with some people getting to grips with it at a later stage than most while others permanently using AACs (Augmentative and Alternative Communication), with commonly known forms of this being sign language and the use of computers through typing and displaying words.
I’d say I’m semi or partially verbal. I’d say about 80% of the time I can successfully communicate verbally but when I’m stressed, tired or post-meltdown, verbal communication is just not going to happen for me. My speech is not coherent, if I can get words out at all. Luckily, my family are adaptable at these times, and will only ask me questions that I can nod or shake my head to, slowly easing me back into speech.
It’s not just verbal communication though: social cues, facial expressions and knowing exactly when to speak are also difficult. Facial expressions are baffling to me! I mean, I understand that you’re feeling negative or positive but anything else? I’d likely chose a random one that fits into those two categories and presume you’re feeling that. I feel the same with body language, which made my Year 8 drama lessons … interesting. “Show, with only your body language that you’re feeling sad” was something I’m sure I responded to with a highly-confused look. It means my body language, and that of other autistic people, might not be what you expect.
Another social cue is the tone of voice, that one got me into a bit of trouble when I was younger. Nothing bad, really, but my mum would tell me not to be so rude, or something similar, and I just didn’t get it! My words weren’t rude, but apparently my tone was. (I would like to note here that my mum is wonderful, and especially post-diagnosis we know why these things are the way they are!).
Knowing when to speak seems to be a constant nightmare for me, especially when it’s coupled with my social anxiety. The latter means I get embarrassed so easily in social situations. Pausing for breath is something I find baffling. I get it’s necessary, of cause but when someone’s still got more to say but they pause for a second, I don’t walway het it! Particularly when I’ve got a lot to say, I misinterpret this entirely which leads to a mess of two conversations on top of each other and an embarrassed Emma.
Autistic people will often ‘script’ which is sort of what it says it is. I think it’s an adaption from not understanding situations. For example, if someone says “Hello, how are you?”, an autistic person might have a completely planned answer, but if you were to ask another question or change topic, they might not be able to communicate because it’s not been planned beforehand.
Finally, echolalia is another way some autistic people communicate. It’s a fancy term for the repetition of a word or phrase. Anyone who’s seen Sesame Street’s new character Julia will realise that when someone asks her to play, she responds with “Play! Play! Play!”. It’s her way of agreeing. This is a more communicative form of echolalia but it can also be seen as a stim – liking the way it sounds and feels as you say. Julia says “boing!” when she’s jumping and I’ve got to admit, it’s a great vocal stim!
Hyperfixation, including special interests
The third point is hyperfixations, mainly talking about special interests. So, what is a special interest? It’s a term reserved exclusively for neurodivergent people in relation to a passionate level of focus on a specific topic, item or thing. They’re usually so intense and mean a lot to autistic people. They can range from TV shows, books and films to plants, history or transport. There is a difference between liking something and having a special interest, but this is so easily misunderstood. I find it disastrously tricky to explain this, especially since my longest standing, main special interest is popular. You see, Harry Potter has been the biggest special interest in my life. I’ve read all the books and watched all the films at least eight times each since I was 11 years old. I study passages and even have a notebook dedicated to the thoughts that spiral after even thinking about it. However, so many people like Harry Potter and I’ve had conversations that have gone like this:
“Because part of being autistic is having intense interests, I’ve read the books eight times and….”
“That’s not an autistic thing – I love Harry Potter too!”
It’s just kind of missing the point. My interest is not the “autistic thing” but the intensity of happiness it brings me and the way I focus on it is. I can be occupied for hours just reading the same books over and over, noticing new details and living in a world completely different to my own. I can’t begin to explain, in a coherent and understandable way, what the special interests make me feel but I can give an example.
After a meltdown, I was tired and not really communicating with my mum, through choice, I just wasn’t sure what to say. Next to my bed was a copy of Harry Potter and the Philosopher’s Stone, and my mum, trying to distract me from the uncomfortable state I was in, said “So you’re reading them again?”. I’m fairly certain I nodded, and my mum noted how far I gotten…and that I was it. Out of my mouth flew a large infodump (the term used for explaining details about a special interest, often in an excited manner) on where I was and what was going on. My mum, not one to read, probably thought ‘What a lot of nonsense!’, but the smile on her face cheered me right up.
Routine and issues subsequent changes
Strict routine is often something associated with autistic people, and for good reason. I love routines and find things horrible if the routine isn’t followed. For example, I have to leave the house before 8:17 in the morning and if I don’t, I might not leave the house for the rest of the day. I don’t mind changes to my routine if I’m very prepared in advance or if the change is on my terms. As part of this, order is a huge part of my life. I like organising things in a way that makes sense for me. Changing routine or order can lead to a meltdown, because it’s really distressing when things are different. I found holidays really distressing when I was younger, enjoying them for the most part but hating the change from what was normal and always demanding to hear what we’d be doing the next day.
So that was just a run down of what autism is and especially what it means to me. I hope it’s helped to make sense of it from a first person perspective. It’s really easy to understand autistic people by just communicating with us, even if we do find that difficult sometimes!