Living with Autism by Jessy Rose
I got diagnosed with Autism when I was 27. It’s quite common for girls to get diagnosed later in life, if at all. One of the reasons for this is because girls tend to engage in more ‘masking’ behaviours. ‘Autistic Masking’ is when people with ASD (Autism Spectrum Disorder) suppress or hide the signature characteristics of the disorder by mirroring or essentially copying the behaviour of someone who is neurotypical in order to appear more ‘normal’. However, masking comes with its own complications. Studies have shown, over time, it leads to higher levels of anxiety and depression, this is because by masking you often don’t engage in self-soothing behaviours such as ‘stimming’ which is short for self-stimulating behaviours. (For me that involves rocking back and forth, flicking my nails or rubbing my ear). Masking is also extremely physically exhausting and by hiding parts of who you are, it becomes difficult to feel accepted by people.
Autistic individuals also suffer from getting overstimulated which leads to sensory overload. We are far more susceptible to sensory information than the average neuro-typical; we hear things louder and feel and see things more intensely. Because of this we can go into sensory-overload, which is when there’s too much or too intense a stimulus. For me, if things get too loud or I get too hot, I get extremely dysregulated which can lead to sensory-overload. For me it feels like an intense anxiety attack with an overwhelming need to escape the situation, I also sometimes feel mental and physical pain from it. Frequently when this happens functions like speech, decision-making and information processing can be affected or temporarily halted. This makes it extremely hard to try and communicate to explain to those around me what is going on.
Like many others on the spectrum, I struggle with the textures of some foods and meals. I can get obsessed with a certain meal or food for months at a time and will eat it nonstop until the process repeats itself with something else. Sometimes something as simple as going out with a friend for dinner can be overwhelmingly anxiety provoking. If it isn’t somewhere I’ve been before then for the few days leading up to the meeting, I will constantly be obsessing over a huge range of things, wondering ‘Will the music be too loud?’, ’How packed will the restaurant be?’, ‘Is the light going to be too yellow?’ I must make sure to look up the menu beforehand so I know what I’m going to order and I also practice repeatedly what I’ll say to the waiter/waitress when I order so I don’t stumble or go mute. ‘Is there an outside area where I can go to calm down if I get overwhelmed?’ ‘How far from home is it if I can’t cope?’
Due to my autism (and social anxiety disorder) in certain social situations I may go mute and physically unable to speak. I never quite know when it’s going to kick in. I can go into a coffee shop to order a coffee, wait in the queue and then when it’s my turn to order, sometimes it kicks in. As a result I can’t speak and end up running out the shop riddled with embarrassment and shame.
In order to help me manage day-to-day functioning in a world that was built for neuro-typicals, I carry around what I call my sensory bag (picture shown). Inside there are many things I use to keep grounded or can use to re-regulate myself when distressed.
These include; noise cancelling earplugs for public transport or any other loud environments, a textured fidget toy/plushie/friend as well as a textured stone (focusing on certain textures helps me stay stable), also a lavender roller and some sour sweets. When I get dysregulated I can use either the roller or sour sweets and focus purely on the smell/taste to help ground me. Some of these sensory techniques are also used in Dialectical Behavioural Therapy to help with anxiety and other mental health struggles.
There are good things about my Autism too though! People with Autism tend to have much more empathy for both human and non-human life. I get attached to objects and they become my comfort. The characters in my favourite cartoons or books, become my friends. I am very accepting of others and our differences. I am also very honest, loyal and committed.
Sadly no, I don’t have an ‘autistic-superpower’: the kind of ‘skills’ that are so much emphasised on social media for people with autism. I can’t solve a rubik's cube in under 10 seconds, I can’t remember all the facts I hear, and no I don’t have an intense ability to see the minute detail in everything. But what I do have is the ability to find enjoyment in all my little hobbies, such as photography, fashion, textiles, pottery, knitting, reading etc. I may only be average at all these things, but they make me happy to engage in and I’m happy with that.
Please note this is ONLY my experience with my autism, it varies from person to person, after all it’s a spectrum. It’s also important to note I have LSN (low support need) autism as opposed to HSN (high support need). For individuals with HSN Autism it can affect their life to a much bigger extent and although there are some overlaps, my experience and struggles will be hugely different from a HSN individual.
If you know someone with Autism, ask them about their experience with it, about their own difficulties and challenges, see if there are ways in which you can help when they get disregulated, or ways to try and prevent sensory overload. By educating yourself about their Autism (remember it’s different for everyone) you help to make them feel accepted, understood and loved. Make sure they feel okay to be their true authentic self and help them feel like they belong .
