I have questioned why this is my first post. Surely it would make sense to start with the lead up to diagnoses and how I arrived here on WordPress at 33 years of age talking about being autistic. But it does make sense to start with how my relationships have changed. The main thing about autism is in relationships. How you relate to the world. How you relate to society. How you relate to your fellow sapiens. And seeing as I have been obsessed with figuring humans out for pretty much my whole life, it seems necessary to get this current topic out of the way in order for my stubborn as fuck brain to move on. So, I will start with a brief list of points I pulled together when trying to think about what some of my loved ones have done post-diagnoses that have helped.
Also, fyi, the coral left indented italics is my tangent speaking.
It helped when people:
- Listened when I needed to talk about ‘it’ rather than brushing it off and trying to ‘distract me’. It= Autism.
- They were not afraid of the word ‘autistic’. In my experience, Asperger’s is a more socially comfortable term than Autistic or Autism. Humans cannot hide their true prejudices or ignorance when you say ‘I am Autistic’ to them.
- They acknowledged that I have changed, that the relationship will therefore change and that this is a good change.
- They were honest with me about their processing. They told me when they were struggling with my diagnoses (not as direct as I would prefer). I will never forget this honesty, as knowing exactly what people are thinking (by them telling me) means I do not need to speculate (and my brain will never stop processing speculative options if it is trying figure a human out and this interferes with my sleep).
- They carry on as if my opinion carries the same weight as it did before- I have noticed people dismissing my opinions since they learned about my diagnoses. I am sure they don’t do this consciously but they don’t realise that they now frequently cut me off mid-sentence or glaze over in their eyes whereas before they would have *appeared* to have respected my opinion. However, there are a small few people who have not changed in this way.
- The have not changed who they are with me but they’ve allowed me to change into my real self. That’s real acceptance.
- They ask questions about it.
- They crack a friendly joke about me relevant to my (autistic) quirks. This is my kind of humour so I personally don’t take offence.
Despite this very positive list, I have still found myself devastated by the grief of realising that the depth of some relationships were not what I thought they were. I don’t really have a scale measure for relationships. I am either in a relationship with you, be that friendship, related, partner, professional, or I am not. I don’t have the several levels of acquaintanceship, leading up to the several levels of friendship that I observe in the complexity of most human relationships.
This got me into sticky situations in the past where I would share personal information with ‘acquaintances’ that would be deemed inappropriate (I only know that now), but I would never have known they were an acquaintance. I am only starting to learn what an acquaintance is now and it is exhausting trying to figure out what information is appropriate and what is not. I am sure I will eventually get it but until then I am trying to reduce the amount of acquaintances or acquaintance encounters in my life.
Now back to the grief. The grief of realising that people, who you thought you were close to, are just carrying on as normal, never mentioning your pretty fucking big life changing diagnoses ever again. As if nothing has changed. But it has changed. I have changed. My diagnoses gives me the freedom to be more myself. Don’t get me wrong, it’s not an excuse. You know, like when people say ‘I’ve learned to love myself as I am’ and use that as permission to be hurtful to others. Of course, in the months after the seizure* I was very different. My sensory sensitivities were extremely heightened, like the light would feel like thousands of daggers in my eyes and I could hear EVERYTHING all at the same time. This was always going on before but for some reason post-‘seizure’ it was more intense and I had lost the capacity to ignore it. So, of course, this extreme sensory sensitivity and overload effected my behaviour. It also took me a long time to settle back into my body. Eye contact issues. I would dramatically avoid the light and therefore appear to be putting my back to people. My hands became slippy and I kept dropping things. The feelings from my childhood came up very strong. Feeling not good enough, feeling bad, feeling wrong. Feeling like prey to humans. This is called ‘Autistic Burnout’- where your brain just can’t mask anymore and you are unable to hold back your autistic traits.
It’s hard to explain why and how I became ‘more autistic’ in the months after the seizure and diagnoses, but, I believe it is a common experience. Based on repetitive posts on private autistic groups, this is comes up regularly. I think it’s like when your mask falls off and little things start to come back. Little coping mechanisms.
Body movement for self regulation, is a good example. I have vast memories of spinning in my mothers kitchen- EVEN in adulthood. EVEN post-baby. Yes, as an adult mother I would find myself spinning in her mothers kitchen, completely zoned out. I was doing it in the weeks before diagnoses. Then, after diagnoses I was so aware of it that the self awareness ruined it for me, I couldn’t zone out while spinning anymore because I was all ‘Ooooh, look you’re stimming, you’re definitely autistic’.
So I have come to a somewhat bitter and irrational conclusion that if you really want to know the truth of your relationships, be autistic. Because there is so much stigma and ignorance around it, you instantly become a ‘weaker’ animal. Even though it is an illusion, this instinctual change that goes on behind people’s conscious mind exposes their true self.
- You will find what I now call predators are those people who verbally or mentally attack you, say negative things about you to others, reject your diagnoses without even talking to you about it, misinterpret your non verbal language despite being told about your diagnoses, completely shutting you out of their life, unfriending you on social media etc. This will hurt but if you analyse the pre-diagnoses relationship you will find that you actually have nothing to grieve because these people don’t give in relationships, they take. So then you realise you have nothing to grieve.
- You will find sleepers. People who pass no comment (to your face), who think nothing has changed, refuse to process with you, or literally go on as if nothing ever happened- but get really awkward when you try to talk about it. I have found this to be the most common response.
- Then, my friends, you find the incredible representations of human beings. These magnificent creatures are everything you want the future of humankind to be. You want to collect their DNA and spread it far and wide. These precious, rare beings are people who, despite their fear, opened their mind and heart to this extremely big event in my life. Who acknowledged how scary it was for me to have a ‘seizure’ while driving my children home in the car one night, who asked me how I was in the weeks afterwards, who remembered that I had had this terrifying experience. People who heard my diagnoses, and opened up to further information beyond the copy and paste clinical bullshit you read on most autism charity websites. People who asked questions, held space for my tears, celebrated my finding myself. People who put this significant life challenge ahead of their own processing. People who carried me, emotionally, mentally and even spiritually during my most challenging period. People who saw me as an incredibly strong survivor of life, who honoured me, who gave me space to exist. And that brings me to my final point:
I believe society has implemented such ignorance and stigma around autism that once one is autistic they instantly get zoned to the ‘prey’ section of human social hierarchy. It’s an instinct thing. As I have said above, I have found many people in my life have changed the way they receive me. They are less considerate of my opinions or advice, they cut me off, they seem to think it’s okay to talk to me firmly, as if I am a child. It’s like all their unconscious prejudices of autism are working in some subtle way. As if, on an instinctual level, I am less than- I am prey. As if I am stupid, when I am not.
So, let me just take a moment to announce to the world this statement:
I have survived for 33 years completely fucking lost in this world. My brain has been wasting it’s time all these years trying to process human behaviour, non verbal communication, irrational logic, ego based dog eat dog bullshit and so on. I have spent countless hours talking myself down off the edge of suicide. I have dragged myself up and out of the pits of depression, put my mask on and faced the world as if nothing were wrong. I have lived my whole life with a mask on. I have adjusted my sense of humour, my outrageous ideas, my quirky self expression, my drama, my diet, my whole approach to life- you name it, I have adjusted myself to fit. And you think I am weak? I am a weaker human because I am autistic? Ha! I have achieved incredible things despite all of the above. I have a husband. I have children. I have written words that brought humans off their own ledges and words that have connected people to themselves. Despite living on what feels like the wrong planet, I am still positive, enthusiastic, loving, caring, affectionate. I am a bringer of joy. I am a survivor of many scary, ugly things. And I am still here. Smiling. Loving. Laughing. Giving. I might seem weak. I might seem ‘too sensitive’. I might seem breakable. But that’s all just an illusion. When you listen to #actuallyautistic people, you will find that they are loudly informing the world that we are different not less. We think different. From the first moment I was told ‘you think different’ I thought “The world could do with some new thinking” and I felt hope inside, that maybe there is a place for me in society.
Living un-diagnosed this long has been as if I were stranded on the wrong planet and I have survived. But now, I know what I am. I know who I am. And I am telling every single predator human out there that there is not one single ounce of me that is prey, or weak, or disabled. To those who are asleep I say that our relationship cannot evolve, it remains frozen and inauthentic. I wish you would come with me, to where I belong- to who I really am.
To those magnificent human beings who have made the biggest year of my life a whole lot easier- I will forever remember how you have carried my soul when it was at it’s weariest. I will never forget your magnificence.