My autism is not glamorous

Recently I have read several articles about autism in which the writer, who often has an autistic child of their own, criticizes people putting higher functioning autistic people in television shows. They use words like ‘mild’, ‘not real autism’ and most recently ‘glamorous’. While I appreciate that my experience differs from a lot of people with autism, namely those who are non-verbal (I do not like functioning labels much), I find it quite upsetting that you would dismiss my experience of autism in such a way. Allow me to give you some examples to show why my ‘high functioning’ autism is not ‘glamorous’.

Anxiety

It is likely that most people on the autistic spectrum suffer from anxiety at some level. Mine is severe, and that is not just me over-exaggerating. I can have anything from one up to twenty panic attacks in a day caused by anything from seeing a moth to a massive routine change. I am scared to leave the house due to agoraphobia and have to be accompanied at all times as a result.

Behaviour

My behaviour can change quickly. Although I may seem calm, I am probably just faking it. Just one thing can change my acting stance into what I call the ‘real me’ and then my behaviour is unpredictable (even for me!) and potentially even dangerous if not handled well by my support staff. Just because those of us with ‘high functioning’ autism are able to fake it, this is only to some extent. It’s like the metaphor of the calm swan paddling for dear life under the water but you just see the calm.

Self injury

This is not just reserved for one end of the spectrum and verbal autistic people get this behaviour too. I have had to have wounds bound up where I have smashed my head so hard into a wall repetitively. I used to suffer from rashes where I would burn myself on the carpet while I had a meltdown. As a teenager I went down the… shall we say… more traditional route (thanks to some poor advice from another teenager), and I often bite my arms and hands, sometimes until they bleed.

Difficulty expressing myself

Although I talk… a lot… it is rarely about what needs to be talked about, such as my feelings. I cannot tell you what feelings are going through my head because I cannot name them. As a result, a typical emotion can quickly become totally overwhelming to the point of a meltdown. If I am feeling ill, I am more likely to tell you to go away (in a much less polite way!) than tell you I am ill. I suffered from gastritis for well over a year before I was able to tell anyone what the feeling was accurately enough to pursue a diagnosis (and now treatment). Try not to confuse talking with communication.

Auditory processing

Again, I can talk extremely well, which makes it very confusing for people to understand that my understanding is often extremely poor. While I can’t explain this scientifically (it’s probably a wiring thing), it is extremely common in verbal autistic people. Not understanding 3/4 of what is said to you throughout the day can lead to yet more frustration and more meltdowns.

Sensory processing

A part of autism is a sensory processing disorder (this can be diagnosed as a condition on it’s own without autism) and this affects the five main senses plus vestibular and  proprioception. Everyone has this at a different level, so some may love loud noise, bright lights, strong fabrics, strong flavours/smells and vestibular activity (stimming) while others may hate all of the above (although would still stim but to keep the other senses out!). Others, like myself, may have an extreme aversion to one or two senses, but seek the others. Sensory input, whether too much or too little can also trigger meltdowns.

Meltdowns / shut downs

When everything gets too much, I either have a meltdown or a shut down. In a shut down, I will attempt to block out everything to the point where I am basically catatonic and unable to speak. In a meltdown, many of the behaviours I described will come out, along with uncontrollable screaming and/or wailing. Neither can be solved quickly or easily and the best option is to leave me alone while I feel this way (which is easier said than done at times) to avoid further input. I have also gone into such a severe ‘flight mode’ that I have ran into traffic without any thought for my safety. (fight or flight mode is what animals go into when they are frightened. Humans have mostly learnt to control this). I will suffer from a ‘hangover’ for several days after the shut down or meltdown and may have to sleep it off.

So to conclude I can talk, but I cannot communicate. I do have some spiked skills, but not enough to get me a job or earn me a place amongst the ‘Aspies’ or 400 (ish) people with savant syndrome in the world. While my autism may appear to be less ‘severe’ on the outside, it is still hard to live every single day like this, knowing things will never change or get easier. I appreciate it is hard to live with a non verbal autistic person sometimes, but please try not to get into the habit of comparing us as this just causes anger and tension.Finally always remember that if you meet one person with autism, you have met one person with autism.

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One of my less ‘glamorous’ poses

 

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5 thoughts on “My autism is not glamorous

  1. Oh, my dear, I understand your frustration. I hated when I read stories about autism and thought my son isn’t autistic enough to ever be part of the community. And when I later sought a diagnosis, it felt like no one would believe me.

    I was labeled Aspie, and my struggles are quite real. I relate very well to many of your issues. My son is also verbal and bright, but he struggles with so much. It is certainly not glamorous, the endless IEP meetings, therapy, chewed up fingers, meltdowns and pain of trying so hard and never seeming to get it right.

    Thank you for sharing and I look forward to reading more of your work.

  2. Neither is mine and sadly have experienced it longer at my age 64. Though thanks to my parents i do not have some of her issues that makes life rough. We average vocabulary with 5x or 6x as many words in vocabulary 30K is almost normal to average of 5k marked by how often you hear “You Knows” along with hearing TMI also a lot

  3. Well said! I recognise all of this – for myself with Asperger’s Syndrome (I also did a degree in psychology 🙂 I now work as a counsellor and tutor) and for my son, who is your age and is classically autistic. So many things are exactly the same wherever you apparently ‘fit’ on the perceived spectrum.

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