Autism: Highly Functioning?

There’s a label when talking about autism.

‘Highly-functioning’.

It’s a term intended for professionals, but one that is used generally. In this post I’m going to try and illustrate why hearing this term makes me scream inside.

You can dress yourself? You’re highly-functioning!

I can dress myself, but sometimes I wear those same clothes for days because the thought of having to put something ‘new’ on makes me anxious. I do change my undies daily though – in case you were wondering?

I have sensory processing issues and hate to feel constricted in any way – so neck-lines, waistbands and sleeves have to be just right or my brain snaps. Also, I can’t tolerate anything that isn’t almost exclusively cotton. How I survived the seventies with it’s obsession for nylon, I’ll never know. Maybe that would explain whay I was a little shit most of the time?

I can physically dress myself, yes, but it’s a sensory nightmare.

You can wash your own hair? You must be highly-functioning!

I can physically wash my hair (though it’s getting to be more challenging now with the fibromyalgia) but it will be 80% dry-shampoo by the time I do wash it – which will be when I can’t physically get a brush through it. Or my scalp itches -whichever comes first!

I have a mobile hairdresser who comes to sort my hair out a couple of times a year. Even though she’s lovely (and technically brilliant) and I always look forward to seeing her – I still get the inevitable migraine which comes with having to make conversation. Recovery usually involves painkillers and at least three hours sleep.

You can apply make-up? You’re highly functioning!

I’ve been wearing make-up since 1983, but it’s a mask. Without it, I feel vulnerable. Might as well be wandering around in my bra and pants, innit? However, my routine rarely varies. I use the same products every day. Even if I go completely nuts and buy something new, I invariably revert to my old stuff because it’s familiar.

I don’t like brushing my teeth as they are sensitive as hell, but my fear of having fillings and extractions overrides my sensitivity to brushing.

Just because I can do something doesn’t mean that it doesn’t cause me discomfort or distress.

I used to be the opposite way. I bathed every day. Sometimes twice a day. Occasionally, three. It’s a miracle I’ve any skin left! My hair got washed daily, sometimes twice. It wasn’t necessary. I was just a nutter. Then again, my personal care has always been more psychological than beauty or fashion.

You clean your house? You must be highly-functioning!

Again, it’s all about the realms of what’s considered ‘normal’.

I used to clean obsessively. I would clean the entire house (including hoovering) every single day. The living room carpet got hoovered at least three times a day. I mopped the kitchen floor just as frequently and disinfected everything that was wipeable. I mowed the lawns as many times as I thought I could get away with without coming across as lunatic, but I admit that I once mowed the same lawn twice in one day! That’s not gardening. That’s a bit nuts!

As soon as a dandelion reared it’s head, I was out there with my Flymo. Then I’d be on my hands and knees cutting round the edges of the lawn with a pair of scissors. Yes, I was that person!

The anomaly is that I love to see dandelions elsewhere..

I realise now that it was about control. The same way my eating disorders were about control. I just didn’t understand why life was so hard for me. So I’d scrub, disinfect and mow until the late hours. Then, I’d numb my brain with homebrew. As the Smiths song goes: “I was happy in a haze of a drunken hour but heaven knows I’m miserable now.” For a while, the world was tolerable. I could do this life thing, yeah? Then I’d overdo it. I’d vomit and the next morning I’d wake up to find the world was as confusing as it ever was.

Vomiting aside, my corner of the world HAD to be perfect to compensate for the chaos outside my front door and that inside my head. Nowadays, half an hour of light housework equals three hours resting on the sofa. I am completely the opposite way, but it’s not by choice.

You do your OWN shopping? Are you sure you’re autistic?

I’ve always found shopping difficult because of the social aspect, sensory overload and the range of choice. Choice, you see, overstimulates my brain and the more anxious I become, the more I am unable to make choices – even simple ones like between coffee or tea.

A super-functioner and I can’t make a simple decision between tea or coffee? What am I like?!

Nowadays, I have the added joy (not) of fibromyalgia which limits me even more. For the days when I can’t cope with the supermarket, I do online shopping.

You can drive? Super-Functioner!!

Fancy that, an autistic person with a driving licence!

I was determined to drive because I struggled so much with public transport. Lesser evil, right? With me, it’s always been a case of one fear overriding another. However, getting myself from A to B is a different matter entirely..

For example: Recently, a 20 minute trip to Hobbycraft involved me virtually ‘driving’ the route via Google street maps, even down to checking out the exit route in the car park. Who does that, right? It took me twenty minutes, but it was necessary in order to familiarise myself with the route.

Diversions bugger my brain up. I’m still dealing with a diversion from last week! I NEED to be able to get into my car and drive the same route as I always do, but life isn’t so simple, is it? It creates diversions and obstacles all of which have a knock-on effect with me.

I establish routines and end up going to the same shops and parking in the same places which makes my world safe, but small.

I’m also crap with directions and distance. My sat-nav’s most used commands are ‘When possible do a U turn’ and ‘Route recalculation’. Nuff said?

Some days I can’t drive at all due to brain fog. Better safe than sorry, right?

You can communicate verbally? That makes you highly-functioning!

I can talk. I had no speech delay that I am aware of. I love words, only I prefer to type them. I’m much better at communicating via the typed word. But even then, it’s not simple, as my need for perfection means that my posts are edited 35 plus times! I can’t just ‘knock’ a post out, like most bloggers can.

When it comes to actual speech, I sometimes become aware that my voice has become ‘monotone’ and I have to prompt myself to change pitch. When I’m excited, I talk too fast. When I’m exhausted, I talk too slowly and my brain ‘buffers’. As in, something gets lost between the thought process and communicating what’s in my head.

Then I have meltdowns where I have this kind of ‘verbal diarrhoea’ thing going on. Or I stop talking altogether. This is known as a ‘shut-down’.

Many of us have co-morbid conditions as well as being autistic. It’s life farting in your face, then following through. As if life isn’t hard enough, right?

I also have Fibromyalgia which means I am in some level of pain or discomfort all the time. I also have OCD going on, which is a pain in the arse.

Fibro what? Isn’t that something you take for constipation?

No. That’s Fybogel!

Having fibromyalgia means that I am less able to function than ever and I will have to learn to live within even more limits as this illness is chronic and life-long once it’s established. I also most likely have Dyscalculia (number dyslexia) which makes life difficult as maths is such a necessary part of it. I’ve probably been short-changed out of hundreds of pounds in my time. However, I stand by my argument that trying to learn algerbra was a waste of sodding time!

Ooh. You have a learning difficulty? That makes you low-functioning then?

I was in the top set for English. I scored 98% in my history mock exam because I was (and still am) obsessed with the past. I was also in the bottom set for maths. So, you tell me?

I give up. I don’t know what you are!

I’m an individual.

The term ‘highly-functioning’ belittles how hard it is to get through every day. Just because I don’t need help putting my knickers on, it’s presumed that I function ‘highly’? In reality, every day takes a great deal of effort simply to exist. I’m always in some level of pain or anxiety – even in my sleep. Some days I barely function as migraines wipe me out or I reach my capacity to cope with anything unfamiliar or taxing. If you’re wondering what fibromyalgia has to do with autism. The answer is – EVERYTHING! It’s relative because a life of anxiety makes autistic people prone to conditions like fibromyalgia.

Yes, I can physically do stuff, but it comes at a cost, both physically and mentally.

I get overwhelmed quickly. I need regular breaks from social media/internet due to information overload. What energy I do have is reserved for my role as a mother. It’s primeval, because despite my health, I ensure that my son’s needs are met. I know the days of obsessively cleaning are gone because I just don’t have the strength and that causes me considerable distress, but it means that my obsessions shift elsewhere – as I discovered when I developed heath anxiety last year.

The term ‘low functioning’ is equally as belittling because in labelling someone ‘low-functioning’, society lowers it’s expectations of this person. They are pitied, rather than respected. Or worse, ignored. Just because a person needs help with daily care, doesn’t mean they can’t contribute to the world in a meaningful way!

A highly-functioning person might barely be able to function physically (or mentally) on some days, but there are expectations of them because of a term which most people take at face value. This is why we burn out repeatedly until we become chronically ill.

Is this really functioning highly?

Some days I barely function at all.

I am spending more and more time in survival and recovery mode and if you don’t understand those terms, lucky you!

The term ‘highly functioning’ implies that I am successful at life. That I can do things with ease?

To those who take one look at me and say, ‘You’re autistic? You must be highly-functioning then!’

COME AND LIVE MY LIFE FOR A WEEK. THINK MY THOUGHTS. FEEL MY FEAR, PAIN AND EXHAUSTION. TOUCH MY F**KING PLUGS UMPTEEN TIMES BEFORE YOU CAN LEAVE THE HOUSE – THEN TELL ME I’M FUNCTIONING HIGHLY!

*hyperventilates into paper bag*

The point of this post is to show that being physically able to do something comes at a cost. I’ve reached the point where I’ve worn myself out and I now I’m constantly ill.

If you look close enough, you’ll see the exhaustion in my face. You might notice the way my body slumps with fatigue. You might even see a tear fall unchecked or hear a door slammed in frustration. These are hints to an inner chaos – a chaos I’ve known all my life. Only death will bring me any real peace, but I’m not suicidal. I’m in no hurry to leave this life because there are souls who that make this struggle worthwhile. Three of them call me ‘Mum’ and I’ll fight until my last breath to be with them.

And it is a fight. A daily battle to exist, but it would be a lot easier if people would only take the time to respect us for who we are.

High or low-functioning – the terms are misleading and unhelpful. What we are is individuals.

All images are in the public domain via Creative Commons