I am a wife and the mother of three children. I’ve had numerous jobs, therefore I am what’s referred to as ‘highly functioning’ and if you stick around I’ll tell you why this term gets on my ‘highly functioning’ tits.
You see, some people question the authenticity of people’s ‘autism’ if they’re nothing like their sister’s mate’s autistic cousin or the savant brother of Charlie Babbitt in the infamous movie Rainman. And the problem isn’t only with NTs because I’ve had the immense displeasure of communicating with a member of the Autistic Dark Web who stated that a person cannot be autistic if they’re married, have kids or can hold down a job for longer than an hour.
Well, I am autistic and I am all of above things. Well, I don’t work now cus I’m mentally part-cabbage and my body is decomposing at an alarming rate, but, yeah, I’m a wife, I have children and I’ve had numerous jobs.
But here’s the thing..
I masked throughout school.
I masked in order to get a boyfriend.
I masked in order to get a job.
I masked in order to get married.
I masked all the way through parenting my children.
I masked until mental illness stripped away my ability to do so.
Masking requires a great deal of mental and emotional effort and another problem with masking is that the lines between what’s ‘you’ and what’s not you become blurry until you lose yourself completely.
Masking is stressful, which means that stress hormones are constantly released and this has a direct effect on the mind and body. To the onlooker, it might look like a person is handling a situation well enough but inside is a different story and it’s a very physical experience as well as mental. Ability to function varies on a daily (sometimes hourly) basis and in my case that was always to do with anxiety levels. Now it’s anxiety levels and chronic illness which dictate whether or not I can walk the dog or go to the shop.
When an autistic person keeps pushing through mental and physical exhaustion, day after day, there comes a time when the body says, ‘Nope. Can’t do this anymore.’
This is when an autistic person breaks down.
When you say someone is ‘functioning highly’ you are belittling the effort it takes to exist in this world, let alone, thrive. You show me a ‘highly functioning’ autistic person and I’ll show you a human being who is pushing themselves at full throttle in order to get through life and if the brakes haven’t slammed on already, they soon will, and when that happens they will struggle to function at all.
CHRONIC ILLNESSES (FIBROMYALGIA, ME, AUTOIMMUNE CONDITIONS ETC)
These conditions tell a story. They are a direct result from years of masking and trying to cope. The above applies to me but they apply to a lot of autistic people, especially my generation because we had to try and survive mainstream education (where bullying was still seen as ‘character building’) and life thereafter with no support whatsoever. It took me 41 years to breakdown and when I did it was catastrophic.
Is this highly-functioning?
The term ‘highly functioning’ implies that something is done super well. It has almost heroic connotations. The state of my mental and physical health and that of many (if not most) autistic people over the age of 40 strongly suggests that this is not the case and I definitely don’t own a cape! And how about my anxiety is so bad that I go non-verbal? Is that functioning highly?
Autistic people do not function highly. We function in chronic states of anxiety until our nervous systems malfunction and we burnout. Can you imagine how belittling the term ‘highly functioning’ is to those of us who have literally been broken down by the exhaustion of trying to cope?
It’s not about whether or not an autistic person can physically do something, it’s how they do it that makes the difference. If an autistic person can make a phone call but it involves using scripts and having to psyche themselves up for hours, then feeling exhausted afterwards – that’s not functioning highly, is it?
If an autistic person can go to work but requires anti anxiety medication in order to do so – this is not functioning highly.
If an autistic person panics in unfamiliar situations and emergencies – this is not functioning highly.
If an autistic person relies on people for practical support – this is not functioning highly.
I can drive, so people presume I’m ‘highly functioning’, but it’s not that simple.
Learning to drive was hard because I have Dyscalculia and problems with verbal instruction, however, my fear of public transport gave me the determination to drive and I passed second time. Journeys have to be planned and I need somebody to take me to unfamiliar places first. When anxiety is too high, I can’t drive. I can’t get in the car, let alone drive it. I have a mental breakdown if someone asks me for a lift. I drive to the same places and park in the same bays and it bothers me if I can’t. I’ve never taken a car for an MOT (or through a car wash) and these days I hardly drive at all because of concentration issues. But, I can drive a car..
This isn’t functioning highly, it’s treading water. My head may be above the water but I’m thrashing away trying to stop myself from going under. That’s what us ‘high functioners’ do – we try to keep afloat in a world that’s constantly trying to drag us under. Is it any wonder that most of us are mentally and physically wrecked by the time we’re 40?
This isn’t functioning ‘highly’. It’s functioning, just about.