I was nominated for an award and as part of this I was asked to write about what I do and why.
Coping is not Living.
“Living life mostly on the verge of drowning is no way to live”
My son was 4 years old when he said: “Mummy, I don’t know how to make friends”. A profound insight from such a young mind that just made me realise, being so ‘able’ looking is not all it’s cracked up to be. This was me & is me now -age 42, a trauma inflicted Autistic adult.
If I try to articulate how I feel there’s always someone who says: “Get some perspective. You’re coping so well”. I feel like shoving said ‘perspective’ down their throat and screaming, “living life mostly on the verge of drowning is no life at all!”
The desperate loneliness I feel is all I’ve ever known. I don’t have cancer, I’m not terminally ill but I am a 42 year old traumatised Autistic human who spent 40 of those years lost, no identity & vulnerable to owning incorrect labels in a desperate attempt to fill the void. I feel like I’m made of paper and written on that paper is my life.
I don’t have a small group of friends to go out with- I never have had that, unless it came as part of a package with a boyfriend.
I repel Allistic (non-autistic) people because I’m seen as hard work. Imagine how hard it is to be surrounded by allistics 24/7 and then compare that to the toleration of my Autistc ways for a fleeting moment. Who really has reason to complain?
I’m tired of being made to feel like I’m a burden. I’m tired of the negative energy I absorb off those who have, not so clearly, had enough of me, when all I am doing is striving to be the greatest mum I can for my children, while advocating for Autistics through the sharing of my insight and knowledge. The pleasure this brings when they say: “You make me feel seen, heard & understood.”
Imagine being told, every time you ask for help, no one can help you because you know more about Autism than any specialist in the county. This should make me feel proud but I feel lonely, terrified and helpless. I feel like I am drowning, shouting for help on a loop, the life boat comes near me but they don’t have the right shape life buoy to make the treading of water easier but instead say: “you don’t need our help because you can tread water so well.” my story is, sadly, not the only one.
No wonder the statistics for suicide are as high as they are. (9 times higher than Allistics).
If society was designed with our needs in mind, I suspect that Autsitc people would naturally exists without the need for diagnosis.
I strongly believe societies values are driven by the culture of the PNT (Predominant Neuro Type) The Autistics alternative way of thinking is often perceived as strange or wrong - resulting in the potential benefits of this alternative approach to go unappreciated & therefore overlooked.
This is what I feel causes Autistic Masking.
What is Autistic Masking?
Autistic Masking or camouflaging is the art of artificially performing as the PNT, mimicking their social behaviour or hiding natural behavior that might be viewed as societally unacceptable. It is essentially a survival tactic to guard against unwanted, unpredictable and uncontrollable stimulus, which ironically, leads to irreversible mental health difficulties & ultimately, a heightened risk of suicide. (9 x higher than the PNT)
Masking is likely not conscious because it’s a survival response & that’s something that I believe happens against our will, like breathing- an automated reflex- it keeps us alive. Fear of jumping off buildings - helps towards keeping us alive.
Autism + Environment = Outcome. (Beardon. L, 2017).
I believe an awareness of self & the differences between self & those around you, combined with a strong sense of what is required to experience the feeling of belonging is what plays a huge part in the space between the = & the Outcome.
I suspect the creation of the Autistic mask occurs within that space.
I also think that the awareness of self, the awareness of differences between self & those around you & an awareness of what is required to experience that sense of belonging is a cyclical, ever evolving movement. This movement causes a build up of complex protective layers -like the skin- constant friction from an external source causes the body to adapt or risk harm. If the friction is intense over a short period, a blister appears - Less intense over a longer period & the skin thickens. That thickened area feels less sensitive. This is where I believe identities start to get lost and the facade becomes second nature- a conditioned response to the environment that I believe caused me- an Autistic person -to convincingly pose as a PNT.
This doesn’t stop here; my owning of the facade allows its projection onto others. Only when I become aware of the mask, exfoliate the layers, can I start to fully appreciate how it is to feel 100% Autistic & therefore sensitively support other Autistics as Autsitc so they can show to the world what Autism looks like without trauma.
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