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I have 'High Functioning Autism' – but what does it really mean?

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I have 'High Functioning Autism' - but I'm definitely not high functioning
People assume I can deal with whatever life throws up (Picture: Dave Anderson for Metro.co.uk)

The problem with High Functioning Autism (HFA) is in the name. Too many people equate it with ‘freakishly intelligent, possibly acts a bit like Sheldon Cooper’.

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The reality is usually a bit different.

HFA is simply a label applied to an autistic person who is more ‘intellectually able’ than average than those on the autistic spectrum and applies if you have an IQ higher than 70. Given that the national average is around 100, this relatively low cut off point almost certainly relates to the fact that, in the past, only those with severe and therefore very visible behaviours were likely to get an autism diagnosis.

HFA isn’t an official diagnosis, but it is still used during assessment for autism spectrum disorder and is commonly seen as being interchangeable with Asperger’s syndrome.

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Along with many other autistic people, I don’t see the need for specific labels and indeed, it is being phased out of the diagnostic process. But in the outside world, these labels are still widely used and widely misunderstood.

Because of the improvement in diagnosis rates, more people are now finding out that they are autistic and the percentage of those being considered ‘high functioning’ is likely to rise.

I’m a professional adult: I went to university and work as a freelance writer, so you’d probably expect me to be capable of dealing with most things that life throws at me.

But autism doesn’t work like that.

Autism presents in many forms, some of which make life very difficult indeed. It’s irrelevant how impressive my intellect is or how ‘high functioning’ I’m considered to be, because my brain doesn’t work in ways that other people take for granted.

On the surface, people with HFA simply don’t ‘look’ autistic, which leads others to assume we’re not badly affected and they then expect us to be able to fit in.

My world is black and white, right or wrong. I can cope with someone disagreeing with me, because everyone’s entitled to their own opinions. But if I disagree with someone and absolutely know that I’m right but they refuse to accept it, I can’t cope. If someone does me an injustice I seethe into the night, bemused by how they can’t see just how wrong they are.

Even relatively minor issues kick off this reaction.

metro illustrations
Irrational anger? Tick. (Picture: Ella Byworth for Metro.co.uk)

I had a stressful day last week and decided to pick up KFC for tea, but when I got there, they’d run out of chicken gravy, which is my favourite thing in the world. A very minor thing, but to me it was ridiculous and infuriating: I wanted chicken gravy, they didn’t have it and I was utterly furious.

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It was all I could do not to cry on the spot. I ordered through gritted teeth and snatched my food from the poor cashier, stalking out in silence. I’m not naturally rude – I simply had to get away before I had a complete meltdown. A meltdown over chicken gravy.

This isn’t the executive function disorder that I’ve talked about previously, this is the constant underlying struggle to remember how to behave ‘like other people’ that’s in the background of my every waking moment.

When I go out shopping my mind whizzes ahead, planning my route so that I don’t have to double back on myself. I can’t bear having to retrace my steps – it makes my brain physically itch in a way that is unexplainable.

I work out who I might need to speak to and what I’ll have to say, so that nothing can take me by surprise. Everything has to be in order and I’m constantly on high alert in case I get things wrong.

None of this human interaction comes naturally to me and it’s a real problem if something doesn’t happen the way I expect it to.

Last week I went to a coffee shop where I often work, only to discover that it was closed for refurbishment. Most people would just shrug and head to the next one but I hadn’t planned for that.

I stood on the opposite side of the road staring at the closed shop for so long that passersby began to look at me as if I was a bit strange. Eventually I gave up and went home, because I didn’t feel confident enough to try a new coffee shop.

I sometimes go for months without a haircut because there is only one hairdresser who is allowed to touch my hair. Hair wizard Fran understands my oddness and doesn’t care if I’m a bit weird sometimes but we’re both busy so it can take a while to coordinate an appointment.

I have 'High Functioning Autism' - but I'm definitely not high functioning
Just getting a haircut can be incredibly stressful (Picture: Ella Byworth for Metro.co.uk)

The thought of going somewhere new terrifies me, so I live with straggly split ends and just hope that the Beetlejuice look will come back into fashion.

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People often assume that because I often talk publicly to large groups of people, I must find socialising easy. A big audience is easy as I don’t have to interact with individuals and simply by being there, they’ve declared an interest in what I have to say so I can just get on with it.

But one person sitting across a table? I have no idea when to start talking, when to stop or when to realise that I’ve veered off into a lecture about my current favourite topic that they have no interest in whatsoever and now they’re wondering how soon they can make their excuses and leave.

Oh, and the fact that I can look people in the eye? I learned as a young child – decades before I was diagnosed as autistic – that if you stare at the bridge of someone’s nose they think you’re holding their gaze even when you’re not.

When I was diagnosed, I naively assumed that people would understand why I sometimes behaved a bit oddly and things would get easier. Instead, people assumed that because I now knew the cause, I’d be able to adjust my behaviour accordingly.

Being autistic isn’t something we can – or should – train ourselves out of. It’s a difference in the wiring of the brain, rather than learned responses. I now know why I react to things strangely and over the years I’ve learned how to manage my behaviours and minimise some of my reactions, but however ‘high functioning’ I might be, I will always be autistic, and it’s tiring.

Violet Fenn is a freelance writer and blogger. She can be found at Sex, Death, Rock’n’Roll

MORE: I will never ‘light it up blue’ for autism awareness because we do not need a cure – autism is not a disease

MORE: No, autistic people are not sexless – our sex lives are as varied as anyone’s

MORE: 5 celebrities whose Asperger’s Syndrome helped them succeed

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