A Letter To Those Off The Spectrum
By Tilly Carter| Published on August 3, 2021 | 15 Minute Read
My name is Tilly, I’m 14, I’m autistic, have ADHD and have an appreciation for rice that not many others have. I personally believe it’s a great quality to have but as it’s not the norm, it scares people.
My autism burdens everyone around me. I lack so much empathy and therefore will never understand how much autism has ruined everyone’s lives and in result, I’ll never change because I am simply incapable of caring. I’m the rudest person I know. My social skills are revolting. I don’t make eye contact as I love to offend everyone I speak to. I don’t have much filter; I speak very clearly and this causes much panic in people as they prefer to work out what people are thinking. I guess it’s a fun game that I’ve completely destroyed for them but again, I’m a robot and don’t care. (No need to worry, I’m sure there are many people off the spectrum you can play this apparently fabulous game with.) I hold onto very small facts about others. Even though people seem to express joy when I remember and bring up little things they have told me, as this is a symptom of the severe, detrimental, life-destroying, want-to-avoid-at-all-costs DISORDER, autism, it’s a terrible trait to have. Along with expressing my true, authentic excitement.
If you couldn’t tell already, I wrote that as if I was as a typical author off the spectrum writing from the point of view of an autistic person. AND THAT, my friends, is the sense of humour I’ve now been conditioned with.
You have probably noticed my use of the phrase ‘off the spectrum’. I’m hoping it’s helped you to realise how ridiculous it is to describe a human as ‘on the spectrum’. But that silliness aside, let’s all take this time to reflect on why it was used in the first place. You wanted to avoid the word autistic. That shows, as a person, you hold onto a whole lot of ableism (if you want to call it internalised ableism, that works too) that is now being pushed onto autistic people. Autism is extremely stigmatised and clearly, many people have something that I love (HATE) to call, autistic-phobia. It’s a real thing! It’s extremely contagious and unfortunately very very common. Those with the disorder are making autistic people’s lives a living hell whilst also infecting autistic people themselves with this life-threatening illness. Good news though! Whether people take it or not, the cure is out there. Not to be cocky, but you’ve already taken one step closer by reading an article like this. I, myself, was infected. As was the doctor who diagnosed me. As were teachers. As were the people who were meant to support autistic people. As were friends and family. I can’t speak for others, but through a lot of traumatic unlearning and all of the support I needed from actually autistic advocates who were also cured, I am no longer afraid of autism. Having a brain that you’re committed to hating is not the good vibes humans need but that’s an article for a different day.
"I can’t speak for others, but through a lot of traumatic unlearning and all of the support I needed from actually autistic advocates who were also cured, I am no longer afraid of autism."
Carrying on with that, I’d like to mention, before I continue, the terminology that a huge percentage of autistic people would like to no longer be used. Starting with ‘special needs’. All humans have needs. Usually, the exact same needs. Eating, drinking, having shelter, keeping clean, sensory needs, social needs etc. We’re all the same. However, there are certain needs that are much harder for disabled people to meet because of the world we live in. They’re not special. They’re human needs that are harder to access. It’s a term that is often used to infantilise disabled adults and overall, dehumanise. It is often used when speaking down to people. ‘Special needs’ also communicates the idea that disabled people are somewhat special, extra and have a privilege, when in reality, we face a lot of discrimination to the point that we often can’t access things all humans are entitled to; our human rights have been stripped to some extent. Another thing we’d like to stop the use of is functioning labels. They were used to replace ‘severe’ and ‘mild’ but to be honest, they’re just as bad. Describing someone as ‘high-functioning’ completely dismisses any type of struggle and doesn’t recognise the amount of trauma that has taken place in order for someone to appear like that. It’s often used to describe someone before they hit life-changing burnout. Maybe high-masking is the word you’re looking for. Masking both a life-saving thing and life-threatening and life-ruining thing. ‘High-functioning autism’ also infers that you never expected an autistic person to look like they live a life like you. On the other hand, describing someone as ‘low-functioning’ is extremely offensive and communicates that you believe that this person is not capable of any kind of success. Autism looks different in everyone as usually the ‘autistic traits’ you see are actually just a result and a reaction to an extremely traumatic, inaccessible world. Also, let’s cut out person first language. Autism does define me and if you’re worried about that, maybe check your definition of autism. I’m not a broken allistic person. I’m not an allistic person with autism added on. I’m just simply autistic! Stop pushing your internalised ableism onto those who spent years of traumatic work to undo theirs.
One of the most beautiful things about autistic people is the desire to be accepting of everyone. In my personal experience, I’ve come to realise that allistic people are generally not. Anything different from them is perceived as a threat. But don’t worry, allistic people, I’m not going to write all about how much I hate that about you because I don’t; I understand it. Recently, I was hearing about generational trauma. I don’t know a whole ton about it, so I’m not going to try and educate people on it here, but I believe that it follows the same pattern as what I’m talking about. The general idea of generational trauma is that a traumatic event happened to someone years and years ago and they develop ways of processing/coping with/perceiving trauma from then on. In consequence, these exact brain wirings are passed down generations upon generations. These processes are caused by the actual person’s DNA. I haven’t done enough research to know whether it is a real thing and scientifically correct, however if it is, then it would make a lot on sense in this context. My theory, based on whether generational trauma is correct, is that, centuries ago, autistic people turned up and allistic people felt threatened for some reason or another and from then on, needed to protect themselves when autistic people were near. In that situation, autistic people processed it as: these people are very different to us, let’s learn and be accepting because we know how awful the feeling is when people hate us. These brain wirings have been passed down through each group of people. As allistic people are the vast majority of society, the trait of perceiving different people as a threat has never been changed as most people have it. I guess it’s either never been noticed or never been recognised as a bad thing.
There are a lot of things that allistic people do or feel that makes me think: but i’m still the disordered one? It just goes to show that neither groups are disordered when it comes to this. Also, an important thing that is commonly hard to realise and understand, autistic people don’t agree with/don’t relate to the allistic way of being just as much as allistic people not agreeing with our way. It’s definitely a two way thing. If you call me ‘special needs’, I call you ‘special needs’ as your needs are different and special to me. If you say I have mild/severe autism, okay, you have mild/severe allism. Oh I could go on and on. But, you see, I don’t do that and can confirm it’s a very easy thing not to do. I never see this talked about much, even in online spaces. I think allistic people need to lose this sense of superiority. I do apologise if it shocks you that I’ve said that but that is proving my point even more.
"One of the most beautiful things about autistic people is the desire to be accepting of everyone."
It’s hard seeing yourself labelled as everything you’re not. I’ve been hit with the phrase ‘not everyone has to change for you’ many times, inferring that it’s me forcing these people into doing things, or not doing things, and I’m selfish in a way. I heard that cats have adapted their meows to sound like human babies crying. I’ve held onto that fact for years. I’ve been traumatised into adapting too, but in a less ‘I want to manipulate you into giving me attention’ kind of way and rather a ‘I want no one to think about me ever’ kinda way. I take that back. Definitely a ‘no one wants to think about me and the way I present ever because it’s too confusing for their little ‘everyone has to be like me’ brains.’
‘Well we all have to mask!’ No, there’s a difference between being polite, engaging in social situations, and losing all sense of identity and all natural instincts due to developing a completely fake, robotic personality with lists upon lists upon lists upon lists of written rules of how to behave around everyone and now even myself because it’s impossible to know when it’s safe to be me.
From my pretty short but pretty intense experience of the world around us, I have noticed that if an allistic person can’t relate, no way it can be real. (Which is ironic because it seems to be that autistic people in the media are presented with that characteristic.) Like the whole no autistic person can possibly have empathy thing. In reality, my empathy is so strong and overwhelming it becomes very hard to cope with and often it’s annoying to the people around me. It’s like ‘WOAH I don’t understand how someone could possibly show or experience empathy in this way, therefore they have none and that’s that.’ My other belief of how this theory came about was as follows. An autistic person doesn’t do something that suits allistic people’s often selfish needs because doing that thing will not be respecting their own needs. Unempathetic. Since no one ever wants to be seen as unempathetic, we do things all day everyday that is solely respecting other people’s needs and not our own. Lack of a vital thing for sanity, self-respect. Then resulting in us getting walked all over. Then, years down the line, resulting in a crisis because we simply can’t take this anymore. Which then results in being called selfish and unempathetic yet again! There’s no winning!! YET we are STILL being told we have no empathy and we STILL have no self-respect.
Living in this world saturated with views of autism like this, often caused by awful representation in the media, is a very dangerous thing. It leaves thousands of people a day, including myself, questioning our realities.
Sorry to end this on such an emotional, important note. I guess I could say that we are oh so desperate for change and I’m hoping this article helps the tiniest bit. Let us be ourselves and give us the support and space to work out who that is.
I never intended to offend any allistic person with this but sometimes you have to speak up when changeable actions are ruining people’s lives. I do hope this was helpful to allistics who appreciate and take on criticism from a fly on the wall.
I’ve learnt something being autistic that I think would be useful for allistics to learn too. You don’t have to relate to understand. If understanding is too hard, you don’t have to understand to listen and accept.
I really appreciate you taking time to read this. If you want to see more of my emotional yet somewhat still hopeful and uplifting thoughts, you can find me on these things!
instagram: @autitoons (featuring my very very basic, yet to be developed, comics)
podcast: Because Autism w/ Tilly Carter (name change soon!)
and hey, sometimes I throw in some positivity here and there! wooo and we love community.
About the Author
Hi! I'm Tilly, I'm 14 and think I'm much cooler than I am. I'm autistic and have ADHD and love to make that my only personality trait by talking about it everywhere online. I'm a pretty intense person who's fed up of not speaking up about allistic (non-autistic) people. We find you just as annoying as you find us okayyy and now I've gone too far. Find me on social media @autietoons!