One of the first things anyone asks when I reveal that I received an autism diagnosis at age 37 is “What’s the point of getting that at your age?”
Sometimes it comes with an undercurrent of scepticism – “Well you got by for this long… it must be pretty mild.” Sometimes there is disbelief or incredulity that you would actively seek out such a judgement – “What is the point of labelling yourself? Aren’t we all on the spectrum?” (Note to anyone tempted to say this – don’t.)
And it’s true. There aren’t many practical reasons to get an official diagnosis. It is hard. It can take years. There is rarely any support available. It won’t help you get any benefits or even a blue badge if you need one. There are a million more hoops to jump through to prove you need any of that – and the powers that be are determined to withhold such assistance from as many people as possible.
Any accommodations or protection in the workplace are counter-balanced by the stigma still attached to neurodivergence. There is a tight rope to walk between divulging a diagnosis in order to obtain accommodations and accessibility….and keeping it hidden to avoid ableism and prejudice.
So why bother?
Hindsight is 20/20. Looking back on my life through a different lens is priceless. That constant state of feeling overwhelmed and anxious? Turns out, that’s not just the way everyone feels. They are not just powering through it better than me.
Losing friends does not mean I am a bad person. The way I interpret and react to the world is just a little different and it has meant that, sometimes, we were speaking a different language.
I tried, with every ounce of my being, to be good at my job. And, when there were no other distractions, I managed to be good at it, for a year, sometimes two. It became the hyperfocus, the special interest, the thing I had to succeed in – but at a cost.
Stress has a huge effect on the human body. Sometimes I woke up unable to remember days at a time. The doctors thought I might be having mini seizures. Sometimes my heart was so erratic that I had to wear a heart monitor for 24 hours, only to be told there was no explanation for it. There were times I became so ‘stuck’ that I could not function at all. I could not even decide to stand and turn on a light switch, let alone get in a car and drive to work and teach Dickens to sixteen-year-olds.
They used to be called nervous breakdowns. Society now sees the stigma created by those words and so we tend to use others – but the stigma has not been fully erased. To be nervous is to be weak. To break down is to not be good enough. The neurodivergent community tends to prefer burnout. I have burnt brightly, and I have fizzled out, over and over again.
I am painfully sensitive and deeply emotional. I have sobbed like a baby in staff rooms and stock cupboards, trying to hide what I know will be seen as an aberration by other adult professionals.
But you know what?
I see who I am now, sharply, in focus. And all of it – is okay.
You like to wear colourful clothes? Wear them, they’re stimmy. You don’t have to socialise if you don’t want to. Try the weighted blanket, grab that fidget toy, indulge that hyperfocus or special interest. Buy more yarn. Walk on your tiptoes.
Who cares if it is not ‘age-appropriate’? Watch the videos of pretty rocks. Collect dolls. Watch/play/read the same film/series/song/book over and over again.
There are a million things you ignored or held back from because you knew, consciously or subconsciously, that adults don’t really do that. Normal people don’t really do that.
Eat foods that feel safe and tell people why certain foods hold sensory issues for you. Buy safe food and drink in bulk and who cares if it’s weird to have a cupboard full of it?
Dye your hair blue. Or pink. Or shave it off – if you want to.
Wear headphones or earplugs and don’t worry about people thinking that you are rude. Sit in complete darkness if you are overstimulated and the light is physically painful. Use the subtitles if they help.
Ask for accommodations at work. You don’t have to put up with a sensory hell just because no one else seems bothered by it.
Stop caring so much about meeting the arbitrary standards that you think ‘normal’ people should meet. Stop thinking you have to do certain things to be worthwhile.
Try the medication.
It is not weakness; in fact, sometimes it is a revelation.
Of course, you can decide to do these things without a diagnosis. I really hope people reading this do – because everyone, neurodivergent or otherwise, has the right to do what makes them comfortable and happy and not everyone has access to a formal diagnosis. Self-diagnosis is just as valid but unfortunately harder to accept – by the individual and society.
Formal diagnosis let me accept who I am and the way my life has unfolded up until this point. It has let me move forward with permission to make my life more comfortable. It has allowed me to support and comfort those in my life who are also neurodivergent, especially my son.
Even with the misconceptions people have about autism, diagnosis is not a label or a burden – it is a privilege.
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