The dangers of an autism diagnosis
At the age of 47 I started to look for answers. My life was never my own. I’d worn a mask and tried to assimilate into normal society, friend groups and the workplace with little success for decades.
I stumbled across an online ‘Are you autistic?’ questionnaire and duly ticked all the boxes to see if that would offer any explanation to my daily struggles. Of course I scored high on that with the strong likelyhood that I was autistic so I began my exhaustive research into everything autism related.
I joined Twitter and began following autistic people on there, quickly being welcomed into the community. I soon found out that many of the people I was chatting to had got to the same level of research as myself but like myself had yet to gain an official medical diagnosis for autism.
Upto that point I was definitely working towards joining the waiting list for an official diagnosis. I’d been told of the five year average wait for an adult diagnosis on the NHS so I was considering saving up for a private one instead.
Saving up over two thousand pounds isn’t a quick process so as the years passed, I continued my research, almost resigning myself to the fact that self diagnosis may be my only option. Luckily for me, this extra time allowed me to discover the side of gaining a diagnosis that not many people talk about.
I’m talking specifically from the point of view of a now fifty year old adult seeking a diagnosis; the process of an official diagnosis is absolutely essential for children and young adults because their lives can be improved with the assistance they can access at that age.
Society demands a one size fits all system where no-one colours outside of the lines. Of course this is impossible to achieve because humans are all different, but still society tries to bend people to fit the system. This process breaks many people.
Many of the people I chatted with were relieved when they received their autism diagnosis. It gave them a kind of closure, knowing there was a medical reason why they struggled in this world so much.
I have to admit, for a long time I was desperate to get the piece of paper with a diagnosis so I could wave it with pride in front of the people who wrote me off as an under-achiever, lazy, arrogant, difficult and frustrating to be around. I wanted to shove it in their faces and say, ‘THIS is why I am like this!’
The penny dropped when I discovered that the piece of paper with a diagnosis on it was the only thing I would get for my two and a half thousand pounds or five year wait. There was no help for late diagnosed autistic adults, especially those who had survived and functioned for fifty years. No matter that it was half a decade of brutal survival which damaged me and caused countless breakdowns and burnout periods. It was a case of, ‘There’s your diagnosis, now off you go back to your dysfunctional life and get on with it.’
It was at that point when I decided to forget ever wanting to seek an official diagnosis. If I tried to use it to gain assistance or accommodations in work I would instantly be looked down upon as a nuisance, not welcomed with open arms and allowed to work in a way which suited me best. Yes there are employers out there who would accommodate autistic people but those jobs aren’t something I could aspire to, especially at fifty years old.
Did I really want to give myself a label and mark myself as ‘officially’ different to all of society? Did I want to wear a badge which made people look down on me and run away?
No.
At the age of fifty I have decided that my remaining years left on this planet are best served pretending to be ‘normal’ when society requires it and quietly crafting my life to cope with all the difficulties I encounter as a (probably) autistic person.
Through the pandemic years I shed my mask and tried my best to live authentically but it was like throwing off my armour. It left me vulnerable. As society returned to normal, I tried to function as the authentic me but soon discovered how painful that was. In those three short years I forgot how to mask, how to deal with social situations and function in daily life back out in the big wide world.
The isolation of lockdowns was a gift to me, allowing me to avoid all human contact and taking the pressure off having to put on that mask every working day to function. Ultimately it turned out to be both a good and a bad thing. Good because it allowed me to jump off the rollercoaster for a short time and assess my life but bad because I realised that there was no hope of finding that utopia I once dreamed of where I would be valued for being myself.
I know I’m almost certainly autistic. I’m intelligent enough to know through all the reading and chatting to other authistic people, that my traits align with the majority of theirs. I don’t know any other way to explain my mental state. If a medical examiner isn’t going to give me any assistance with my life after the diagnosis then there really is no point in waiting for one.
Here’s to learning how to mask again.
