You may or may not have heard the term ‘high functioning’ when it comes to Autism Spectrum Disorder as well as low functioning or mild/severe autism. There is no such thing because these labels describe a linear version of autism which most people who do not understand the condition often refer to it as. However, autism is a spectrum. There is no less or more severe autism. People are affected by autism/being autistic in different ways depending on where they fall on the spectrum. Once you have met one autistic person you have met one autistic person. Don’t use functioning labels to describe an autistic person. It is very insulting and indicates you are undermining someone’s abilities.
What is masking?
You may meet me and be able to have a really good conversation with me. In fact you probably would because I appear to be a person who is sociable, confident and extremely good at small talk and communicating with people. This is because over the past 31 years I have learnt the art of masking. I have studied, practiced and researched neurotypical behaviour and social cues in order to fit in. I am like a chameleon. Depending on who I am with you will see a different Lucy. See I may not have been diagnosed autistic until I was 31 but I always knew something just wasn’t right with me. I said the wrong things at the wrong time, didn’t understand when someone was being sarcastic and often took things literally, struggled to fit in or see the point in socialising because I wasn’t always that good at it or even welcome.
You may think this is genius. Or even a cure to autism. You may also wonder why I have to do the above and why I can’t be myself. See the thing is my mask was very much created through trial and error. Whenever I have been myself in my early years I was bullied. In fact I have been bullied both through school and also in employment for letting my guard down and thinking the friends I had made could be trusted. So I know what is accepted by people and what isn’t because people, especially children, can be very cruel especially if you act or think differently so you do quickly learn to try and blend in as best you can even if how you are acting goes against every instinct in your brain and body. It really does take a lot for me to let my guard down with someone.
The reality of the above is that masking is INCREDIBLY exhausting. I even mask on social media with content or responses to people. I won’t just put what I feel, I put what I think will be acceptable and if I can’t think of something I will leave it. Imagine if you had to move to another planet and live with a new species and you didn’t understand how they communicated or their body language or hidden intentions and they didn’t understand yours. So what you had to do was study them intensely and then try it to see if you understood and got ridiculed for being wrong so you went away and studied some more and kept going back until you got it right. Then once you got kind of good at it you had to remember to do it every time you left your house or were with people you did not know very well. Overthinking and second guessing every action on executing conversation when you found an opening or saying nothing for fear of being ostracised from the group?
I hate small talk. Don’t like it, I don’t see the point in it and I find it extremely energy sapping. It is like a phone running too many apps at once. My mental battery drains very quickly and as a result I do not go to functions with lots of strangers at short notice. I have to prepare for anything like that. I do go to work events I go often but I will have prepared topics of conversation a couple of weeks in advance. I will often role play how I want a conversation to go either by running through the night in my head and creating scenarios both good and bad, so if either happen I will cope with them. I will check the venue we are going to so I can get a visual image of what it is like and see what would and wouldn’t be appropriate to wear.
I have no self-confidence and I’m very hard on myself despite the fact I will appear confident and bubbly. To me it is what it is. It will take years to undo the above.
I have verbal processing disorder so when I am giving someone eye contact, I can get lost in what they are talking about. I will zone out and really struggle to follow the conversation so will try and latch on to a word to re-engage then change the subject.
I make sure my body language is open when someone is speaking to me so I appear interested. I will not fold my arms and make sure my hands are on show. I will smile or try and keep my face neutral depending on the topic of conversation.
I will not really engage with what I am interested in I will try and keep the topic of conversation about the person who is speaking to me and will ask open ended questions for example: how was your weekend? Did you go anywhere nice? Did you do anything? What did you watch on Netflix? What was it about? Was it any good?
Apparently, it makes people feel good if you take an interest in them rather than talk about how you ran 10 miles and went for a 15 mile cycle to try and relax, destress and recharge.
So you may think what is the problem with masking if it helps you get by? The problem with masking is it leads to autistic burnout which is the scariest thing I myself experience and the problem is it is a bit like when the brake pads wear down on your car. You gradually adapt to the longer braking distance by braking earlier. That is what the early signs of burnout are like. For example you skip your shower to save energy one night and try and recharge. You take a break from social media. The you do this again the second night and before you know it, it is 3 days you haven’t showered and you are just about surviving.
You go to work exhausted and everything takes that little bit of extra effort. You do not feel anything you are numb. You don’t want to speak, to smile, to see people but your job is picking up the phone and engaging with people and this is kind of the problem with being autistic and being held to the same standards as your neurotypical colleagues. You are not neurotypical and to constantly fake being neurotypical is just so damaging for your mental health.
I have been told I am lucky that I have the easy autism and that I should count my blessings. If people were in my brain for just 1 hour, they would realise my brain does not shut up. There is a constant narrator in my brain playing out scenarios of my day to day life. Meetings, conversations, my day. It is never quiet. I struggle to sleep and then I struggle to get up in the morning and I am often surviving on an average of 5-6 hours of sleep Monday to Friday then will sleep for 19 hours on the weekend to try and recharge ready for the next week. Does that sound lucky or easy?
My manager is my biggest and main support system at work. He understands masking and as a result knows if I ask to work from home for a day what I am asking for/telling him is:
- I am struggling
- I need support
- I need stability
- Help me
I hate asking for help because I feel like a burden and it takes me weeks sometimes to say I need help. I will always try and help myself before asking someone else but I am learning it is better to just ask rather than struggle. My manager and I have an open honest relationship and I’m lucky really because there are a few people I can reach out to in the business and ask for support and help. None of which costs money might I add.
Sometimes I will work from home just to recharge for a day. Other adjustments I have are to take my breaks at different times so the kitchen is quiet and I can also listen to music/podcasts in my own headphones between calls to block out noise.
How I can be helped as an autistic person:
- Do not hold me to eye contact. Honestly the amount of times I have been asked if I am listening because I am staring out of the window looking at leaves on a tree or staring at a picture on the wall behind a person. When I am doing that, I am listening because my focus is on what you are saying and not on your eyes.
- Ask me about what I am interested in. Take an interest in me like I have with you.
- If I don’t appear chatty one day don’t take offence. I might just not have the energy to engage it is nothing personal.
- Don’t ask if I am OK and expect a truthful response. I will tell you I am fine even if my brain is on fire and I am about to have an internal meltdown.
- If I have said or done something to upset you, please take me aside and tell me so I know not to do it again. It is never intentional.
- Finally be patient. I am a person. It takes a lot for me to let my guard down and feel comfortable in your presence.
Across Autism Acceptance Week, Barbour ABI will be releasing blogs discussing more aspects of Autism and videos from my colleagues. Don’t miss out, follow our LinkedIn profile to keep up to date!