by Nanny Aut
Feeling invisible is not unique to autistics. From a lot of people watching over the years, I think that it is a really rare phenomenon for someone to see another person clearly and cleanly. We colour our vision of others through our own personal experiences and expectations. The majority of us, myself included, often see what we want to see or what we expect to see rather than what is actually there. This can be positive or negative. We can see someone as trustworthy because we want to trust them. We can see someone as manipulative because past experience of being manipulated, or being told we are manipulative ourselves, has coloured our view.
There are so many things that help obscure our view – stereotype, reputation, cultural beliefs, imperfect knowledge, personal experience and beliefs, even our personal situation at the time of meeting someone. For instance, if I meet someone when I am feeling under threat, I am much more likely to see them in a negative light, than if I meet them when I am feeling good. Research has even shown that if you are holding a warm drink you will feel more positively towards someone than if you meet them holding a cold drink. We are that vulnerable to external factors.
And for NTs research has shown that there is an instinctual negative response to meeting an autistic – there is a subconscious ‘not one of us’ that kicks in within seconds of meeting. And this is made worse the better an autistic masks. The theory behind it is that a ‘hidden’ autistic is interpreted as an intruder infiltrating the group and is a threat while a clearly visibly autistic is seen as an open visitor who needs to be evaluated before trust is offered. That ‘I don’t know what it is but…’ feeling you are having – that is what it is and needs to be acknowledged and addressed.
This results in all of us not feeling seen and feeling misunderstood at times. Look at how NT culture relies on artefacts of possessions and hierarchical status to denote the value of a person. We wouldn’t need these if people genuinely just saw others and accepted them as they are.
That said, I do think that the experience of being invisible is often more intense for autistics for numerous reasons.
The first comes from earliest childhood. As we start to try to connect and communicate, very often our attempts aren’t reciprocated. Our carers use a different language to us, isolating us at the very time we are learning to establish connection. A recent study has shown that in autistic children under three, stress behaviours decline significantly when the parents are taught to communicate our way rather than expecting the child to communicate in the parents’ style.
As we grow, our needs are often not recognised or understood – ‘It’s not that loud’, ‘What is your problem?’, ‘What is WRONG with you?’. And our expressions of distress are either ignored or worse, punished.
‘I’m sorry, you don’t get your reward today. You didn’t have a good day and had a tantrum.’
For tantrum read overwhelm and meltdown caused by severe stress.
What we hear when this is said is: ‘You are a bad person, not worthy of love and nice things. I don’t care that you are in distress, and don’t know how to manage it, that is not my problem, I only care that your expression of distress upsets ME.’
We try our best to be seen and we are dismissed as ‘attention-seeking’. Of course, we are seeking attention, because being seen is a fundamental need that is currently missing from our lives. And as children this is especially true. If your carers aren’t seeing you and watching out for you, evolutionally speaking, you are a sabretooth tiger snack. As far as our Dino brain is concerned – not being seen is literally a matter of life or death.
We are told that our experiences and feelings aren’t real or aren’t correct. We are told that our way of communicating is rude or unpleasant. We are told that WE are rude and unpleasant and unwanted. We know it isn’t true but have no way to counter those beliefs. It is made clear every day that the people who love us and care for us the most don’t see us at all – all they see is false assumptions and external actions.
Over time, the balance of probability can make us believe that their very negative interpretation of us IS true. That how we see ourselves is incorrect and needs to be erased. We start to see ourselves as bad, unacceptable and unlovable because that is the message we are constantly getting from outside with every correction. And we seek to actively erase ourselves to try and make ourselves ‘compatible’. We paint on an ‘acceptable’ face. And while we feel safe and secure that people seem to like and accept this mask – we know it isn’t real – we know they aren’t liking and accepting us, they are only liking the mask. We can start to believe that if they saw the real us, they would hate us. And we learn to hate ourselves.
We can learn that expressing our needs is unacceptable. That asking for help is not OK. That having our own opinions must be kept quiet if they disagree with the group. That if we show any element of our true selves that is unsafe and makes us open to attack.
The harder we work on the mask and on removing the ‘unacceptable’ truth underneath, the more we become invisible, even to ourselves. A very common issue for many late-diagnosed autistics, including myself, is that when we take off that mask we have carefully crafted, we find nothing underneath. Our identity, our true likes and dislikes, our true opinions have all been ignored for so long, they have shrunk to teeny, tiny kernels. It can take years of nurturing to help these kernels grow and blossom and bloom into our true selves.
The thing is, our psyche knows the truth. The body keeps the score, however much we ignore it. It is no coincidence that severe anxiety, depression and other mental health issues, even auto-immune disorders are evident in many autistics. We have a fundamental human need to be our authentic, whole selves and when we ignore this in order to keep others happy, it places severe stress on our nervous system. And that takes its toll. It is not the only cause, by a long way, but it is an important factor.
For me, there is an unreconcilable dichotomy. I have a need to be seen and valued, as I am, for my whole authentic self. I also have a need to remain invisible, to keep myself feeling safe and protected behind my mask. I crave the connection of being seen. I have a terror of the rejection that being seen can cause. I cannot even feel safe to blog under my own name because of the repercussions from family members who do not want my true self exposed, or because of potential repercussions to my daughter that could occur from me being fully seen.
As a human race we can do better. We can stop asking others to pretend for our own comfort. We can seek to see and understand the real person behind the presentation. We can ask instead of assume.
When we see someone park in a disabled spot and walk to the store, we can choose to see a disabled person who is having a good mobility day or we can chose to see someone who is abled ‘cheating the system’. When we see a child having a ‘tantrum’, we can choose to see manipulative behaviour or recognise the distress at an unmet need. When we see parents engaging in ABA, we can choose to see abusers or we can choose to see loving, terrified parents trying to do the best for their children and getting it terribly wrong, because they haven’t been given access to the right information.
That isn’t to say that people are saints – traumatised people act out of trauma and this can cause us to lose empathy and compassion. People cheat, manipulate, bully and lie all the time. For a wide variety of reasons. This is to say that the reasons for the behaviour are important and finding out the why behind the presentation helps us see that person more clearly. They cease to be invisible. They can no longer act in the shadows.
As autistics we deserve, and need to be seen for who we are – not as a list of deficits, not as a range of ‘superpowers’, but as our whole authentic selves. Our needs, our likes, our dislikes, our strengths and our weaknesses. Don’t buy us sensory toys as Christmas and birthday gifts because we are autistic. Buy us something that you know will personally bring us joy. It may be a sensory toy, it may be a beautiful basket to put our pebble collection in, it may be a Hoover catalogue from the seventies. Remember our food aversions – not because we are going to have a meltdown – but because you want to make eating a pleasurable experience for us.
When our needs are met and understood we feel seen and accepted. When you listen to us sharing our joy about our interests, we feel seen and accepted. When you hear and respond kindly to us expressing distress, we feel seen and accepted. When you let us be who we are and work with us to establish a mutual understanding, we feel seen and accepted.
A song lyric once said ‘The little things mean a lot’ and this is never more true than in demonstrating that you see us, as we are.
Don’t let us believe we are invisible and above all, please don’t teach us that we need to BE invisible to be accepted or feel safe.
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