What On Earth is Autism?

woman looking at sunset
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First, I will tell you what it isn’t.

Autism isn’t a learning disability. However, it is common for autistic people to have additional learning disabilities. It is also common for autistic people to develop ‘co-morbid conditions’ such as epilepsy, dyspraxia, mental health differences, social anxiety and gastrointestinal problems.

But these ‘co-morbid conditions’ are not part of Autism.

The National Autistic Society tells us that Autism is “a lifelong, neuro-developmental disorder that affects how a person communicates with, and relates to, other people, and how they experience the world around them.”

It is a spectrum. But the spectrum is not a straight line that goes from mild to severe… and not everyone is on the spectrum.  

I have imagined the spectrum as being a constellation of stars, interlinking, inside an autistic brain. All autistic people have the same stars shining at different levels of luminosity. This might mean that parts of some people’s Autism are more hidden than others, especially if they are girls or diagnosed-late. This is because they may have learned to mask it.

Parts of some people’s Autism are quieter and calmer than others.

Some of their stars are less vivid.

Does this make their Autism less severe?

Of course not. It might make that part of their Autism less severe. Alternatively, their Autism might be affecting them mentally, which you can’t see, but their whole Autism is incomparable to another.

***

Dr. Stephen Shore famously said: If you’ve met one person with Autism, you’ve met one person with Autism. Just because you know a person with Autism, does not mean you know Autism. Just because you can see somebody’s Autism, does not make it wholly worse. Everyone with a diagnosis of Autism is different.

I am trying to find out about my own Autism by writing, and I’m pretty sure it presents itself differently every day.

***

My Autism assessment is twelve A4 pages long and you need a degree in psychology to understand it. It tells me that I present with Autism Spectrum Disorder (ASD.) It would have previously been called Asperger’s Syndrome, or ‘high-functioning’ Autism, under old diagnostic criteria. I am sometimes ‘high-functioning,’ sometimes ‘low-functioning.’ Sometimes, I am not functioning at all, so this old ‘label’ seems imprecise and misleading.

The test results tell me that I display “functional limitations in social communication, social participation and social relationships.” It tells me that “the impacts of my difficulties with social-emotional engagement are significant.” It tells me that I have “clear difficulties in relation to: engaging in “unusual behaviours;” communicating verbally with adults and groups of adults; tolerating changes and sensory stimulation. I have “highly restricted, fixated interests that are abnormal in intensity; extreme distress at small changes; difficulties with transitions; hypo-reactivity to sensory input; apparent indifference to pain/temperature; repetitive motor movements and abnormalities in eye-contact and body language.”

It was a relief to be diagnosed with something, after thirty-years of hidden-depression, apologetic-despair and suicidal ideation for not knowing why I am the way I am. A diagnosis doesn’t change anything, but it gives you tools to make sense of the life that is yours, instead of wanting to end it.

Over the past ten months, I have broken-down the broad terminology, and learned ten facts about myself, by myself, that make me understand myself in a kindlier way.

Here they are: ten things I want you to know, but would never say

  • I have lived my whole-life not knowing my own feelings. I can now identify and accept a scale of feelings that I have connected to numbers in my head, but I have learned that I am not sure when I feel tired, which explains why I never-know-when-to-stop.

 

  • Despite traumas I have experienced over the past ten-years, I did not grieve. The combination of shock and Autism transformed me into a mechanical-robot, that hyper-focussed on ‘normal’ rituals and routines, in order to escape-emotion. This made me ill because I am actually-a-human, so I am working on everything constructively now.

 

  • My brain does not filter-out ‘irrelevant’ senses, such as background noise, the feel of clothes on my skin, or people moving around. This means I have to process everything at once which is harder when it is really noisy. My sensory assessment revealed ‘clinical concern for sensory overload.’ When overload happens I am hot, sick and sad and it makes me humiliated.

 

  • I have physical stimming behaviours that are sub-conscious. Autistic stims are more obvious and less socially-acceptable than ‘normal’ habits. I do my best to suppress my stims in public, if I am aware, because I have learned that it is “a bit weird.” This puts me under a lot of pressure and explains why my body aches, but I feel ashamed about accidental-stimming in social situations.

 

  • I can make eye-contact but I do not like it. It is difficult for me to concentrate on what someone is saying if I have to look-them-in-the-eye, (unless I know them really well.)

 

  • When people talk to me unexpectedly, I panic. This is because I do not understand the rules of ‘small-talk:’ I am very literal and matter-of-fact; I plan interactions in-advance and predict each possible outcome; I over-think; I am introverted; I worry that I will say something insensitive or weird without knowing; it sometimes takes me a while to process information.

 

  • I have realised some good things too: I have a great memory. I love analysing data, numbers, intricate-details, patterns, lists, facts, song lyrics, solving-problems, links, words, creativity and finding answers. I am very reliable and thorough. I can lie but I can’t live with myself when I do, so I always confess. I do things quicker and better than people expect them to be done, and I am highly intuitive to others’ feelings.

 

  • I imitate girls-my-age so I know how to behave in new situations. It’s a bit like being a chameleon or a copy-cat, and I am seriously good at it. Sometimes, I repeat what people say when I don’t know what to say, to avoid an awkward silence. I realise that I am not often friends with girls-my-age because I feel very different to them, and it highlights my deficits. I have learned to ‘mask’ my Autism because I want to fit-in, but still there is a barrier between me and other girls. It is so hard when your condition is invisible.

 

  • I am constantly preoccupied with ‘right’ and ‘wrong,’ ‘good’ and ‘bad.’ It never goes away.  I think this is why I am fascinated by religion and have an obsession with crime and the police. I think it is also why I find Facebook and the News so-completely confusing and anxiety-inducing.

 

  • It is impossible for me to deal with a change of plan. For this reason, it is hard for me to socialise with more than one or two people at a time. The more people there are, the more complicated things become. Sudden, unexpected changes force me into either ‘meltdown’ or ‘shutdown’, and the side-effects remain with me for a couple of days.

 

Those ten things have been true for me throughout my whole life, but I have only just realised them in the past ten months.

Now things are making sense.

Since my diagnosis I have used writing to try and figure-things-out and it is working. I am slowly accepting it, slowly owning it, and slowly sharing it with others.

Maybe those ten things will help someone else make sense of their life too.

 

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