Hi, my name is Adrian Martin, Clerical Officer in Cardiology and I’ve been asked to do a short video/story for the Festival of Inclusion
I was diagnosed with Autism about 2 years ago, which was a life changing event for me. That doesn’t mean to say that I’ve just got Autism…I’ve always had it…. it’s just that I thought my disabilities were something else. When you have difficulties with the world around you, and people have difficulties with you, and you don’t know why? then you either blame the world, or blame yourself or both.
But…. I’m not here to give a tutorial on what Autism is because that’s not appropriate here, and there are plenty of other sources that would better explain it than me anyway. I do ask though, please don’t use the film Rainman and Dustin Hoffman’s portrayal of an Autistic man as your reference point as to what an Autistic person looks and behaves like. The reality is much more diverse. One of your close colleagues may have Autism and you would never know it, unless they disclosed it to you.
In fact, most of my colleagues don’t know that I am Autistic so this video/story will be a surprise to them……or perhaps not.
Everybody is the same to the extent that we have shared experiences, shared values, things in common, and similar cultural experiences and so on. These are what you may call ‘fundamentals’. However, there is one fundamental you can never have, and that is you knowing what it’s like to be Autistic. More than that though, what it’s like being an Autistic in a place of work where the neurodiverse, such as myself, are marginalised and have to work twice as hard to accommodate the expectations and demands placed on us in a neurotypical environment. I don’t want to have Autism; it is something I cannot change. I cannot learn it away, I’m not Autistic one day and another day I’m not. It’s not an illness….I can’t get ‘better’ in that conventional meaning.
Of course everybody is different. Difference is what you mean when you say the word ‘I’. We all have a self-identity whether we have a disability or not. What makes it salient, in this context, is that one of my differences is that I have a disability.
My experience of the world around me is profoundly different than that of a Neurotypical person. In a world engineered for Neurotypicals those of us with Autism are at a distinct disadvantage. There are very real tangible and intangible barriers that exist, that prevent access to aspects of life such as, relationships, experiences and opportunities that most other people take for granted, and are of little consequence to them.
For example, a simple discussion between colleagues, or friends, participation in a meeting, taking phone calls, and learning new systems of work are all disposable events that are of little or no challenge to most people. For an Autistic person, any or all of these things may become overwhelming in a way that would make me sound like a crazy person were I to forge and hammer these experiences into words.
Autism is invisible, and generally speaking we are really good at hiding it. This is called ‘Masking’, and we spend our whole lifetime doing it.
We have to… so that we are employable, fit in with others, and, at work, to not be regarded by our colleagues as stupid, weird or antisocial.
Should we behave in a different way? It still rings in my ears from when a line manager once told me’, “Well…we are all on the autistic spectrum somewhere aren’t we?”.
Nothing can be further from the truth, you either have autism or you don’t.
There is a good valid reason why so few Autistics are in work, and also why so few of us actually disclose our Autism and the difficulties that we have. Stigma is one of them, but also not being very good at sticking up for ourselves is another. There are just too many obstacles to change things for the better.
We are stigmatised, perceived as a problem, troublemakers, become unemployable and so on. Sometimes if you raise a problem then you are seen as the problem itself. Worst still, my experiences of being bullied in the Trust will last with me forever.
I had thought, back in 2008 when I joined the NHS that it would be an organisation that would look after me, a kind of workplace safe haven. That may very well be the case for a lot of people, but unfortunately not for me. There’s not much positive I can pick from it if I’m honest. Some of my experiences have been crushing, even soul destroying. Perhaps I’ve just been unlucky, but I don’t really think so and so that’s the uncomfortable and brutal truth.
In making this video/story I didn’t want to compromise on the reality of this uncomfortable truth. There are those that see difference and vulnerability as weakness and it brings out the very worst in them. The urge to disempower, remove choices, shout at, bully, make life difficult for and overall treat differently, becomes a temptation too difficult to resist.
Some of those in positions of authority don’t even know they are doing it because, left unchallenged, it becomes accepted and then over the course of time…. normalised. It becomes our normal working culture, and no one dare challenge it because that would be outside the consensus of social accepted norms.
I’m convinced that if people see things around them all of the time, then they stop seeing them. At the very least they turn a blind eye to it, because if it’s not happening to them then it’s someone else’s problem.
I imagine these kinds of behavioural transactions transfer very well not just within the experiences of Autistics, like myself, but also for other minority groups in the Trust, and are recognised, and within the range of your experiences too.
However, to close, I want to leave on a positive. I’m hoping things are going to get better.
Since my diagnosis of Autism I have tried less to be what others want me to be, and have tried to be more myself.
I’m still trying but it’s a difficult and challenging thing to do in the workplace. It’s a neurological disability which makes it invisible and impossible for others to see that I have a disability at all.
This makes it good for masking, but when it comes to being open and honest about it I usually end up being judged, scrutinised and largely misunderstood. After all, some will think, “He doesn’t look like he has Autism”, “He doesn’t act like he has Autism”.
It’s certainly a challenge, and for me, it means accepting my own neurodiversity and stopping trying to mimic neurotypical thinking and behaviour.
Forcing tasks and demands on a neurodiverse employee that are engineered for a neurotypical employee isn’t fair at all, and employers, including ELHT have a lot of work to do before it is.
It also means disclosure of my disability, visits to Occy Health, meetings with managers, and so on…but all are necessary steps to take for change.
Change will not happen by doing nothing, and for me I had reached a milestone on my life journey that I had to force change anyway, no matter what the outcome, good or bad. For others, who might be reading or watching this video, who are Autistic and have hidden it for years and been afraid to disclose, I would say that you can only put it off for so long before it catches up with you.
It’s a scary thing to disclose to your colleagues and managers that you have a neurodiverse disability. Experience and knowledge will say that it doesn’t end well.
No doubt, like me, some may feel that you will be sticking your neck out too far, and fear the risk of getting into trouble, be stigmatised or losing your job.
However, there are those now in the Trust that will support you. The support and understanding that I’ve got from Occy Health, Joanne in HR, Nicola in Staff Guardianship, Joanne my Union Rep, and my managers in my Department have been a lifeline to me.
Yes, historically, some people have genuinely made my life worse, but now, after disclosure and asking for support, some people have made my life better.
I’m ending by just urging any Neurodiverse people in the Trust to get the support they need.
It’s only in bigger numbers coming forward that any meaningful change will happen; I can’t do it on my own.
There is no shame in asking for help and you aren’t letting anybody down. If you are made to feel that way, then it is them that is letting you down, and not the other way around.
It can be therapeutic to tell your story or share your struggles and learn that you are not alone with issues that many of us deal with every day.
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