All humans have needs, starting with the absolute essentials we need to stay alive such as food, water and the air we breathe; along with all sorts of other needs depending on our individual personalities, physiology, social and emotional requirements.
Whereas the essentials are things all humans require, we may each need different things in order to be able to thrive and reach our potential. Do we ever reach our potential as humans? Who knows? But what I do know is that on the journey towards self-actualization we must consider our uniqueness as individuals.
And for me that includes my autism.
What makes this different for me as an autistic person?
Like many autistic people growing up, I was painfully aware that I was fundamentally different to my peers. I did my best to fit in with them in order to minimise the teasing; the exasperation I created in others; and the bullying. This involved a common strategy used by many people, including autistic people called ‘camouflaging’ or ‘masking’.
As a girl and young woman, autistic masking involved me acting in a way that meant I appeared more similar to my peers than I was – this included pretending I was interested in things that girls should be interested in like bands, boys and make-up. It involved me not asking too many questions that would expose my naivety and my particular thinking style – going along with conversations that involved euphemisms and slang in the hope that all would become apparent. It rarely did!
And hiding any mannerisms, movements or ideas that exposed my autistic differences.
Interacting like this meant I frequently missed out on getting my questions answered – or even asked, most of the time! It meant that I never quite understood how friendships and relationships truly worked, I just sort of understood what it was people did within them – and I tried to copy as best I could. I avoided many social situations because they did not appeal to me, and I was not particularly popular because I did not appeal to my peers either.
All in all, I missed out on lots of knowledge and information that my peers were able to gain through intuition and knowing how to ask the “right” questions, rather than the random, unfiltered questions that went off on a tangent like mine frequently did. My social development wasn’t behind that of my peers because I lacked capacity for understanding, it was behind because I lacked opportunities for gaining understanding. I was too busy masking.
For example, I was bright enough to know that asking my classmates what the technical difference was between the two intimate-relationship based expressions: ‘getting off with’ and ‘having it off with’ would end in them ridiculing me. So, I did not seek clarity. I tried to logically make sense of the language to find the answer out for myself, but failed. That boy stuff all seemed quite odd anyway, as did most of human behaviour, and my naivety and vulnerability exposed me to many risks and left me ill equipped to cope with relationships, and understanding and advocating my needs, rights and desires.
Another negative impact of masking my autism meant I was unable to regulate my senses. I did not recognise or appreciate the impact that noisy, brightly lit, and smelly environments had on me, so I didn’t avoid them or limit them. I forced myself to carry on whilst on the verge of total overwhelm – or I shut myself off so that I could function without feeling anything at all.
Opportunities for gaining knowledge, and for developing decent coping strategies, self-advocating and asserting myself were denied due to my survival strategy of masking my undiagnosed autism.
I’ve done OK, I’m beginning to thrive and I’m recognising my potential and the value of my uniqueness. I’ve got to this point through gaining acceptance of how I am, and by playing to my autistic strengths.
What has this journey looked like for me?
My journey is ongoing, I certainly haven’t arrived at a destination where I have found my purpose – but on the good days I am beginning to thrive instead of just about making it through yet another day of struggles. Life has become less of a struggle – but there was no “Eureka!” moment of throwing away that mask, embracing my autism and finding the world had suddenly become welcoming of my neurodivergence. The world remains biased towards people who on the whole are not like me, society still needs to change and become more inclusive. I am grateful because I have more insight and opportunities than I have ever had that I can use to make my life better.
Unmasking and being authentic
I have always wanted to be accepted for being me, I have longed for people who will appreciate my questions; my unique perspectives; and my differences. But that doesn’t mean I can act impulsively or disregard other people’s feelings – even when those feelings are very different to my own and seem illogical to me.
Humans are social animals. I find social occasions challenging due to my sensory and cognitive processing, but I recognise that I have social responsibility towards my fellow humans. Like many autistic people I am passionate about equality and fairness and I become distressed at the injustices I see in the world and continually seek ways of balancing inequality and making the world a better place.
So taking off my mask and behaving authentically autistic by stopping people mid-flow to ask for clarification; or correcting someone who has made a mistake; or publicly laying on the floor rocking and crying because the noise, lights and smell of the room have become too unbearable; or distracting everyone else by moving about; or telling someone exactly what I think of them – these are all things that are genuinely “me”. They are my default settings in some ways – but should I take that mask off and show them? Or should I keep it all in and hide how the world is making me feel, keep the mask on and let my identity and self-esteem slowly erode away?
For me, the answer is “neither”.
We are social animals; our actions usually impact upon others. Our actions create responses in others and shape their attitude towards us and how we are subsequently treated – whether this is right or wrong means nothing. There are consequences for everything we do.
There will be times that I am blunt, I will say what I think, I will correct people or stop to them mid-flow in conversation. I will need to move about in order to regulate myself. I will experience sensory overwhelm in such a way that I am debilitated by it sometimes. As I said before, these are my default settings – I did not choose to have senses that work in this unfiltered way. I do not choose to take things literally. I am driven by seeking balance and find injustice so very “wrong” I cannot turn a blind eye to it. In fact, many of these so-called aitistic deficits that I was born with, are also my autistic strengths.
Can I unmask then without experiencing negative consequences?
I believe that everyone masks some of the time. It is what makes us human – and social. No one can be unfiltered, or impulsive, all the time and function well socially.
So, I choose not to mask my autism – I own it! And that means being proactive and taking responsibility for myself as well as others. Here are some examples of ways I am authentically autistic:
- If I know something is going to be difficult, I prepare. I don’t mask my autism to myself either! Going to town is tough so I plan short trips, I take headphones and my bottle of water. I keep scented nasal inhalers in my bag. I don’t keep pushing myself but take time out to regulate my senses and take stock of the situation. I am proactive so that the chance of me becoming overwhelmed is reduced.
- I make arrangements prior to needing adjustments wherever possible. I let someone know that if they are holding a meeting, I will need the agenda up front. I ensure people know that I prefer a text first if they wish to speak to me on the phone. Or if someone just calls, I don’t answer but ring back later when I feel comfortable rather than answering and becoming stressed. If I am entering a conversation where I am likely to need to ask questions, I’ll ask upfront how to do this best. “I’m much better at taking things in when they are written down, do you mind if I make notes please?” or “I tend to lose track if I need clarity, is it ok to interrupt to ask questions if I need to please?”.
- I am assertive. If I am asked to do something that will be difficult for me I will state my needs up front without needing to justify them endlessly, make excuses, or apologise for how I am: “Emma, would you like to come to a party on Friday?” “No thanks, I really don’t enjoy parties myself, but I hope you all have a lovely time, thanks for asking me”
- If I need to regulate myself, I will politely leave and go and do whatever I need to do, rather than trying to get through the situation silently whilst hiding my needs or disrupting everyone else. I will keep things to hand that help me – I may have things to fiddle with, to stroke, to crunch on, to drink. I’ll choose the chair that suits my needs best and I’ll sit near an exit and I’ll ask if there is noise or lighting that can be adjusted if need be.
- I am quite a private person, so I tend to state my needs with little explanation and add to that if necessary. I do not need to justify why I need things to be like they are. Sharing my diagnosis is occasionally helpful but frequently people don’t have a great deal of knowledge about autism and may even misunderstand it. If I am not in the mood to be their teacher, I don’t have to be! It is ok to say “I am not able to wait in this queue because of my disability, please can I go straight in?” I have frequently found that if I am assertive, people will respond more positively than if I bombard them with information about why I need something.
What really, really helps?
Like many autistic people, I have a life full of effort. Effort to fit in, or effort to hide how I really am. Effort to not offend people. Effort to understand how everything works.
Even my unmasking is full of effort. My unmasking means I own my autism and I am proud of who I am and what I have achieved. But, my autistic default settings, as I like to refer to them remain unchanged. I do not choose to be blunt in order to offend people – I am puzzled that some other people do not value honesty as much as I do. I do not ask questions to annoy people, but to understand them better. My need for peace and quiet is not done on purpose to be awkward. My logical way of thinking that is so useful in some situations may seem out of place when it comes to interpreting hidden meanings or reading between the lines – but I accept that many people prefer operating in this complicated, tricksy – dishonest I might even say – way.
I can’t really hide these fundamental facets of my personality. I don’t feel a need to apologise for them either. My autistic deficits (if you view autism in a medical way) are also my autistic strengths: my integrity, my eye for detail, my innovative ways of thinking, my passion and depth of knowledge.
All humans have strengths. All humans are imperfect. That is something that unites us – autistic or not.
So, when I do act authentically me – yet offend you, please remember this: I am probably doing my best. I am probably not being deliberately annoying or trying to point out your errors. I may have defaulted to the wrongful assumption that you see the world as I do. Please try and see the world as I do for a moment too.
I will take responsibility for myself and accept my social responsibilities. This means that I recognise that not everyone else experiences the world like I do, and my actions may be interpreted differently to how they were intended. It helps me when non-autistic people reciprocate and take my perspective and discover how I am perceiving the world. When this happens, they may realise that my lack of eye contact is about conserving my strength for concentrating on their spoken word, rather than becoming overwhelmed by the deluge of sensory information that comes from eye contact. Then it becomes less important to them as they understand that I am not being rude. Then our interaction becomes more positive.
I believe that autistic people compromise, and even deny their needs endlessly. Masking our autism means our needs don’t get heard or met. We constantly try to fit in with a world that may feel alien. My description of how my unmasking works demonstrates how important my sense of social responsibility is. Just because I don’t like hanging out with people for fun, doesn’t mean I don’t care about them. Perhaps if more people were willing to meet me halfway when it comes to communicating authentically, we would have more fun!