There are a lot of us about recently, you might have noticed us. People who have suddenly discovered their neurodivergent identities. People who didn’t used to be autistic, who are now very autistic. People who didn’t used to have attention difficulties who now proudly display their attention deficit hyperactivity disorder.
What do you think of us?
We can come across as self-absorbed.
We can sound angry.
What is going on?
I am one of these people, just another voice in the crowd.
My friends, like you, noticed that when I was diagnosed as autistic, I seemed a lot more autistic than I had before. What was going on? One friend said to another: “Is it just that we didn’t notice it before, and now we know that she is autistic we see her autism?” Another wondered aloud whether having been diagnosed as autistic I no longer felt the need to hide my autism. Was that why I seemed more autistic than before?
And of course, in common with many people diagnosed in adulthood, I had those friends who denied the diagnosis. I do not think they meant to say that they knew better than the professionals who diagnosed me, or that they had more information than was gained through the multiple tests I went through and the hours and hours of interviews that were conducted with myself and with my family and friends. That’s not what they were thinking at all. What they meant was that in their minds, autism is one very particular thing, and I am not that.
I can only speak for myself. But I think my experience is one other people will relate to. I think my friends were right: they did notice my autism more when they had that lens to look at me through. And I did stop hiding aspects of myself around them. Especially them. And it was on them, those whom I love most, those whom I trust most, that I practiced my advocacy. And in the online world too, where speaking is often easier because it is to a screen not a person.
I practiced saying what I felt, what I needed, what was different, what was fair, what was not. I was finding my way. Sometimes my tone was too loud or the words too vague. I didn’t get it right. I still don’t.
You see it was not just them who saw things differently post diagnosis. That lens of autism that they saw me through, was the same lens I was able to look out and see the world through. Suddenly so many of my experiences in life made sense.
Have you ever seen one of those visual tests for colour blindness, where there are lots of coloured dots on a page, and if you can see certain colours, then a number or a letter is revealed? You get the same thing, and it is the introduction of a colour overlay that reveals the hidden character.
Being handed my diagnosis was like being given that colour overlay. Suddenly as I looked around at the world, I could see all the places where my neuro difference matters. They were all there before. They all had an impact before. But I couldn’t see them before.
Suddenly seeing them…. all those tiny little dots…all those situations where the world is set up for people with a different neurology to mine…. was overwhelming.
There were so many.
I would reach to try and explain one, to try, for example, to explain to the midwife why telephone appointments were difficult for me. In my explanation, I would bump into another aspect of autism that needed to be explained before this particular barrier could be understood—for example language processing difference. As I tried to explain this, something would get said that indicated another explanation was warranted. For example, she would say “don’t worry lots of people feel that way”. Offering reassurance based on a presumption of neurotype, a presumption of emotional processing. When you set out to explain the first little thing it feels manageable, but very quickly the task appears too vast to surmount.
We do not get a comprehensive understanding of our neuro differences simply by being told that we have them. I was trying to explain things that I was only just beginning to understand myself. And as you explain one, another 10 present themselves. It feels like being in an avalanche. Those first pebbles that dislodge might seem small, but if you cannot explain them away quickly enough the rest of them will fall and you will get squashed.
We, newly diagnosed neurodivergents, can sound like we are overreacting to minor inconveniences in our lives. But what is happening is that we are seeing those first pebbles begin to fall. And we are panicking.
We shout, not because we are angry but because we are scared. We shout because we hope to be heard. We shout with the passion of one who knows that if they are not heard, they will soon need rescuing.
I have been squashed lots of times in my life. Before my diagnosis it was, in some ways, easier. Because when I was squashed, when I had a breakdown, when I burnt out, when I quit, when I left, and when I was admitted as an emergency to hospital, it was just one of those things. These things happen in life sometimes, a shift of fate, a change of luck, it was out of my hands. But now, I retrospectively realise there was action I could have taken in all of those cases; they were each a result of misunderstanding.
Just one tiny pebble’s worth of misunderstanding.
And then the next,
And the next.
And here I stand in my life now. With pebbles falling upon me. I have a choice to make. Do I shout at the pebbles, do I raise my voice in fear to try to survive, or do I keep quiet and let the pebbles fall?
Knowing that if they fall they will cover me, and my voice, and the rest of the voices in this crowd. For I am just one voice in the crowd.
We sound angry. We sound like we are overreacting. Making a fuss about tiny things. But, in actuality, we are scared. Not of being crushed because we’ve been crushed before.
No, what we are really scared of is daring to live authentically.
Joanna Grace is the author of The Subtle Spectrum, a book which charts the post diagnosis landscape of adult identified autism.
Her son is the UK’s youngest published author with his book My Mummy is Autistic which explores the language processing differences Joanna experiences.
Joanna is a fan of social media and welcomes new connections.