There is a stereotype of Autism where someone who shows clear physical signs of the condition. They expect us to rock back and forth and not communicate at all well. When someone on the spectrum can mask so well, they pass off as neurotypical, any concerns and struggles are brushed aside like they don’t matter or have been made up. People forget the struggles we have and the judgement we have received to cause us to mask the way we do. Something I have discovered is it is much harder to get any support when you don’t “appear anxious” and can “communicate well” or make one short journey to the same place every day. This is what I was told when applying for financial support, people with disabilities are penalized for many things, such as living with a partner or being married. People with a non-physical disability, one that affects their daily life through a cognitive difficulty that may not be visible all of the time. This means we are constantly discriminated against or supposedly “making it up for attention”. All the while neurotypicals are putting functioning labels on us, but we are only “high-functioning” until you see us have a meltdown.

There are expectations of the way we should act and feeling hyper-aware of letting the mask slip because people have never been accepting when that does happen. It’s almost as though we can’t identify as disabled because most people can’t visibly see it. Neurotypicals have a tendency to invalidate our struggles either by comparing us to their children who may struggle with some things more outwardly or they say that we don’t look like we struggle at all. Visible and invisible disabilities are equally valid. No one struggles more than the other on the whole, we all struggle with different things with different levels at different points in our lives. I can appear to be neurotypical in front of people or in the workplace, but I will be on very low “battery” from the moment I am alone again. Only my partner ever gets to see me like this as it is a part of me that is very vulnerable, so I have this fear of judgement to show it around anyone else. I am very good at holding back tears or masking a panic attack.

With the current situation and panic that is spreading throughout the world, this topic is becoming more and more prominent. When people visibly show signs of disability or general unwellness, most of society accept it and choose to make adjustments for those people. They will gladly acknowledge visible difficulties, perhaps even glorify it to make it seem as though they are being all inclusive. This is what is upsetting to a lot of people with an illness or disability that isn’t visible from the outside, we are forgotten. Now I will primarily be focusing on Autism and how that is being overlooked, I don’t feel as though I can speak for other disabilities as this is based on my own experience and what I have been told by other Autistic people (and they do identify as Autistic however I will not be naming them here).

I’d like to discuss accommodations that are being made at this current time that many were told isn’t possible for their disability for a multitude of reasons. Some of the accommodations include, working from home, skype conferences, online courses, having time off from work and more. To dissect a couple of these something like online courses would really help a person with Autism and in my experience, this would be ideal on bad days (in the form of burnout and depressive episodes) and days where the social anxiety is far too much too handle. Something like having a mental health day is still frowned upon because as far as a workplace is concerned masking doesn’t matter you just look “fine” and “able to work” in their eyes. To get to the point of vomiting and upset stomach from anxiety or some issues with food, whether that’s not eating or the fact that you might be sensitive to some foods which causes a negative reaction – just to name a few reasons I stay home sometimes – now when we call up the standard responses are “Are you sure you can’t come in?” or “You don’t seem unwell” and “you seemed fine when I saw you” there are infinite responses all questioning our credibility. Then everyone acts surprised when you break down in tears or can’t hold the mask up any longer. They don’t want to know when we struggle or how hard we fight to fake the smile all day long, they forget anything we tell them is going on and assume what they see is the whole truth.

I also know that many people are sensitive to smells and fumes, so they tend to wear masks outside to help protect them from it. Now we have the issue that it is advised not to wear a mask unless you have a virus and wearing a mask for any reason is now met with more disgusted looks than before. It is deeply upsetting that because we look more or less okay means we shouldn’t be doing the things that help us cope. I have heard so many members of the public using this time as a reason to be racist and I truly feel for anyone who falls victim to this. I know a lot of people on the spectrum will know that some people are sensitive or have allergies that their mask protects them from (including the increasing smell of bleach or hand sanitizer which can be quite a sensory shock for me), but now the hypochondriacs and the general ignorance of people are making comments about mask wearers and their race without a second thought to any alternative, simply because they have been made aware of those who wear them. It is appalling to think people can be so self-centred and so rude to not think about anyone else.

I think people are also forgetting that by stock-piling their food they are forgetting that there are people can only eat certain things. We aren’t just fussy eaters, some food doesn’t agree with us and we can be extremely sensitive to eat, which is one reason for eating the same thing every day. Basic things like pasta have been flying of the shelf, I can’t imagine how other people on the spectrum are dealing with this. Please be mindful of others. People who mask to get through the day need routine, comfort items including food, and especially for people not to judge or make comments that we can’t always understand if it is serious or sarcasm.

I have found that I am highly sensitive in comparison to the neurotypicals around me. The virus being a prime example, while people seem to make jokes or complain about trivial things or luxuries like their planned last-minute holidays being cancelled, I find it hard to see the humour or understand why that is their biggest concern. I think so logically that my immediate worry is money and how we can afford the basic living expenses. Where will the money come from if I call in sick? How will we survive as two people on minimal income as my partner works a zero hours contract? What will we do if we have to bulk buy as the shops are selling out of everything? There is also the concern of not being able to buy the food or toiletries. I eat a lot (and I mean a lot) of pasta it is especially important during stressful times as I know I will always be able to stomach it. Pasta, beans and other long-lasting foods are being stockpiled by the panicked, unreasonable public that think the apocalypse is happening. It even goes as far as certain sanitary products which is a nightmare as I have sensitive skin and very few products are actually comfortable for me, otherwise I am distracted all day by the feel the pad I am using. This means I have to look ten times as hard for the things I can actually get on with. All the delivery slots are going like it’s Christmas too! I don’t have the ability to drive to a shop and the nearest store is a train and a bus ride away not to mention the walks in between. For someone who struggles with public transport, the thought of doing it with 4-6 bags of shopping seems hellish. It feels very inconsiderate as I am sure most of the physically disabled and or elderly are relying on home deliveries as well. So, to be told I can’t have any of my usual products, at my usual time, on my usual day is freaking me out! Despite all of this people still don’t want to acknowledge that I am struggling, and I don’t know how to put it into words when I am at work or in the company of others. I have tried mentioning it but they either brush it off and forget because it isn’t interesting or dramatic enough (I assume because people are getting upset over a holiday I couldn’t afford due to financial responsibility but they could definitely rebook for a later date) or they make a joke or try to seem like their concerns are of the same value when they make quite clear isn’t debilitating for them. They don’t see this situation like a living hell, it’s simply a thing that is happening the same as any other day. It’s hard, we feel ignored or misunderstood, not to mention seen as overly dramatic about pasta, when everything is changing, and autistic people generally don’t like change. I hate it with a passion and can’t wait to have my routine back. The looming idea of complete isolation and lockdown is extremely uncomfortable right now and if anyone is still in that position, I feel for you. (I am currently writing this in the middle of March and have no clue as to what life will be like in two weeks when this goes live. We can only wait and see now.)

Aside from current affairs and the panic spreading the world, before this happened and certainly once it is over, we will be back to “normal”. “Normal” is when they stop making accommodations and expect us to deal with it. “Normal” is when we still get laughed at for wearing masks. “Normal” is when people assume that after getting so distressed, we will immediately be fine. You would be very wrong if you believe that our experience will be the same as yours. I will go over this in another post at a later date. To see these updates click here to subscribe:

Everything seems overwhelming at the moment and I hope this week everyone can check in on their neurodivergent friends even if they seem okay. Be mindful, be gentle, be kind. You never know who is struggling. Happy Autism Awareness Week.

May all your wishes come true…

Kayleigh