The Look and Feel of Autism

How Autism Looks from the Outside

My diagnostic assessment has now come through. Here are some interesting observations from the ladies who examined me:

  • She interacted appropriately with the examiner, however the quality of these exchanges was more stilted than would be expected from a woman of Mrs Miller’s ability
  • Her reciprocity was less than would be expected, and she used some descriptive gestures but only in a limited way
  • Her intonation was somewhat flat and monotone
  • She used limited facial expressions and eye contact during this  assessment, noticeably less than would be expected
  • The examiner had to work harder than expected to maintain the conversation
  • She was able to answer questions but found it difficult to maintain the two-way flow of the conversation
  • She sometimes did not notice non-verbal cues of the examiner that she had spoken for long enough. This reduced the overall quality of the exchange between Mrs Miller and the examiner
  • She appeared somewhat socially awkward
  • She found it difficult to demonstrate creativity and imagination

How Autism Feels from the Inside

Here is what you can see:

  • I have been happily married for 27 years to the love of my life
  • I have three interesting, engaging, beautiful children who make my heart swell with love at the very thought of them
  • I have a fantastic network of loving and supportive friends
  • I have an amazingly fulfilling, enjoyable, challenging, and yes, well paid, job, that I just plain love
  • I can dress myself, run a household, sustain a relationship, raise children, hold down a job, speak, type, communicate with strangers, to all intents and purposes, function

Here is what you can’t see:

  • Years of constant, usually severe depression
  • The inexplicable (until now) sense of alienation – the sure and certain knowledge that I am not like everyone else, less than everyone else, unable to do the simple day to day things that everyone else does, with absolutely no idea of why
  • The years of bullying, of being the outsider, of struggling to make friends, struggling to keep friends, being weird and offputting with no intention of being so, being taken advantage of, being scammed and conned and lied to, being mocked almost constantly, because I just am different – with no idea of why, or how I can change
  • The multitude of times that I caused offence, without meaning to, struggled to communicate, was told I should know better, was told that I should know what I did wrong, was ignored, passed over, insulted, rejected. Over and over and over
  • The struggle I have to get out of bed in the morning because the list of things that I need to do in order to just leave the house is so long – and it never becomes automatic. I have to check every day that I have remembered to wash, put on deodorant, brush teeth, brush hair, get keys, get purse, get phone
  • The struggle I have to feed myself and my children a varied yet healthy diet because the opinions on what healthy means are so strong and so disparate, and mean making endless, constant choices. We’ve more or less settled as a family for a diet which is monotonous, and healthy on our terms
  • The dread I have of hearing the phone ringing because I’ve spoken to too many people today and I’ve run out of social
  • Me looking shifty at work because I’m tired and I’ve run out of eye-contact
  • Me dreading the phrases ‘could you just knock up a one-pager’, ‘let’s just have a five minute call’, ‘could you just note down the actions here’, ‘it’ll have to be an audio’
  • My constant worry about what I should wear for work, and that I have no real idea if I’m dressing appropriately
  • The fear I feel when I have to walk into a room full of, not even strangers, but people I don’t know very well, or don’t trust. There are a lot of those about
  • My discomfort at having a one on one conversation in a closed room with anyone except for my immediate family and very closest friends. I will always feel more comfortable if there are three of us – possibly four. But more than four is a crowd
  • You probably don’t see me walk into walls, doors, tables, chairs, people. I’m usually covered in small faint bruises. You may not notice me drop things, freeze when I have more than one thing to pick up at a time because I can’t work out what my hands should be doing, take a minute talking under my breath before I’m organised to leave my desk. (Not the house, my desk). Take notebook. Take pen. Lock pc. Do I need my purse? Do I need my coat? Shall I take my phone? About half the time I forget something and have to go back
  • You’re not with me every evening when I go through my day, assessing all of the interactions I’ve had for whether I ‘passed’, whether people noticed anything weird, whether I walked through someone’s boundary, whether I pissed someone off, whether I just plain got it wrong. With every single day comes a lessons learned assessment
  • You’re not with me when I remember, sometimes unprompted, all the times in the past I got it wrong, feeling the rejection and humiliation all over again, wondering if I’ve solved those issues through experience or whether they’ll happen again
  • You don’t feel the utter, abject exhaustion that means I sometimes cannot stand up. That sometimes leads me to fall asleep during the day as soon as the adrenaline ebbs

I can’t speak for any other autistic person – we’re all different, so that’s why they call us neurodiverse. But this, to me, is the difference between observation and experience. Unless you are autistic, you’re going to find it very difficult to understand what it feels like.


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