What it’s really like living with autism

Michael Barton April 8, 2016

I have a physics degree and work as a market analyst. I’ve written two books and done a two-month speaking tour of the UK. I also have autism.

What it's really like living with autism

Specifically, I have high-functioning autism. I started my education in a unit, progressing to a mainstream school with support. I’m a musician and I find that music helps me because of the routine and repetition involved in practising and also its social aspects. I am also a black belt (1st DAN) in judo, loving the precision of the instructions and movements.

There are around 700,000 people with autism in the UK and, for reasons I’ll explain later, they are likely to gravitate towards science and technology jobs – and can have very successful careers in those fields. But what is it like to live with autism?

The perception of being different

To me, autism spectrum disorder (or ASD) is a negative description. To most autistic people, their highly ordered way of thinking makes them consider the world around them to be disordered. In my opinion, autism only becomes a disability (at the high-functioning end) in an environment where you are expected to be sociable because autistic people don’t understand the unwritten social rules that everybody abides by. It’s a bit like being left-handed in a world designed for right-handed people.

The ‘invisible disability’

Autism is sometimes called an ‘invisible disability’ because it’s not obvious just by looking at somebody if they’re autistic or not. The defining characteristic of autism is that they have difficulty relating to people.

Autism is a bit like being left-handed in a world designed for right-handed people.

Autistic people, children in particular, often make poor eye contact. As a child, I was always being told to look at people when they were talking to me. I didn’t like looking at people’s faces – it would be distracting for me because I’d watch the detail of someone’s face rather than their facial expression as a whole. So instead of thinking “wow, he’s got a big nose”, it was better not to look at someone’s face. However, other people believe I’m not listening if I don’t look at them, even though I could usually repeat what they have said word-for-word.

Autistic people have an under-developed internal theory of mind, so they sometimes have difficulty working out what other people are thinking or what their intentions are. On top of this, autistic people have real difficulty understanding non-verbal communication. It is widely accepted that more than 65% of human communication is non-verbal – facial expressions, body language, gesticulation and tone of voice. Being unable to understand this means people with autism only get less around a third of the information available (and then people use expressions and sarcasm, meaning they only understand half of the remaining 35%), so it’s no wonder autistic people often say or do the wrong thing. They need to be explicitly taught how to read body language, learn the meaning of expressions and sarcasm – in the same way you would learn a foreign language, for example.

Another characteristic is that autistic people are often brutally honest, which can come across as being rude or blunt. They don’t understand things such as sarcasm, irony, euphemisms, or any expression that’s a different way of saying what you mean.

The other area of difficulty is communication, a lot of which is down to their logical way of thinking, as autistic people tend to see things as black and white. This way of seeing is excellent for maths but tends not to work so well with English, where similes and nuance are importance. A classic example is “it’s raining cats and dogs”. For someone with autism, this can be very confusing because it’s not literally raining cats and dogs. Even in maths, this ambiguity can be an issue. It’s not unusual for an autistic person who has been asked to “find x” for the first time to draw an arrow pointing to the “x” on the paper. Even in maths, a subject where many autistic children excel, the question has to be phrased in an unambiguous way.

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find_x

Good, clear communication is essential when dealing with autistic people. The English language is full of idioms, metaphors, colloquialisms and figurative speech. When I was in junior school, due to my very literal way of thinking, I found it tough and confusing to understand what people were trying to tell me. A strategy we used to help me make sense of the English language was to have an exercise book in which I would write down the confusing phrase, draw a picture of the meaning that first entered my mind then my support assistant would write down the correct meaning underneath.

Another frequent characteristic of autism is special interests – an intense interest or obsession with a particular topic. People often refer to children with autism as a “little professor” on their favourite subject or area of expertise. They do this to help them control their environment in a world designed for neurotypical people (those without autism) whereas in most everyday circumstances, they can’t have this level of control. This pursuit of control is what drives them to learn everything they can about a particular topic. These topics are often quite unusual or obscure, such as washing machines, drain covers, light bulbs or batteries. I was interested in dinosaurs, sharks, the universe and Pokémon, to the extent that anybody could ask me anything they wanted to know about those topics, and I’d tell them straight away.

Autism and employment

Getting a job wasn’t easy for me. I felt I was ideally suited to every job I applied for and couldn’t understand why most of them wouldn’t interview me!

When people talk about autism, they focus on the deficits and not so much on the abilities. I wrote on my CV that I have high-functioning autism and portrayed it in a very positive light, with skills such as:

Being very focused
Exceptional attention to detail
Punctual
Reliable
Quick learner
Honest

Autistic people have many great skills to offer which are often overlooked but businesses and society could easily and beneficially harness them. However, poor social skills often mean that people with autism will get screened out during the interview process. Some of you may have watched “Employable Me”, currently showing on the BBC, and there was a perfect example of an autistic young man (Brett) who was hopeless at the interview but, when given a two-week trial, was fantastic at the job. In fact, part of my interview here involved a practical test, assessing me on my attention to detail, which I believe to be a much better way of determining my suitability for the job rather than purely on vague, open questions.

I like to think things are improving, with increased awareness from more enlightened companies. What’s interesting is that technology companies seem to be more proactive than many others. SAP and Microsoft are both actively recruiting autistic employees and even the Israeli Defence Force’s Visual Intelligence Division has benefited from autistic employees by harnessing their extraordinary capacity for visual thinking and attention to detail, both of which naturally lend themselves to the highly specialised task of aerial analysis. Last year, New Scientist ran a cover feature called “Neurotypicals need not apply – big business headhunts people with autism”.

There is an increasing demand for scientists and the autistic qualities they exhibit, for example, attention to detail, high level of technical ability, logical approach to tasks, being highly conscientious and being able to focus for extended periods of time. I think that, if you fast forward a few hundred years, people on the spectrum could outnumber the neurotypicals in the scientific sector. If anything, this could result in people not talking about an autism spectrum disorder, but a neurotypical disorder – I wonder what the criteria would be…

This article was originally published in April 2016 to support Dennis Publishing’s 2016 chosen charity CASPA (Children on the Autistic Spectrum Parents’ Association). CASPA does fantastic work supporting young people and their families and Michael Barton is a patron of the charity.