Sixteen years...

?Trigger Warning: death, early death, suicide rates amongst the autistic population

For Autism Acceptance Month I wanted to share some thoughts on an important subject. Death. My entire small tiny family are autistic. I want as much time with them as I can get. I want us all to have happy, fulfilled and long lives. But there is a problem - a big one - and to overcome it we must have acceptance. Not awareness. No. Acceptance.

I like a debate.?I like my views to be challenged.?I must revisit my values and approach to life regularly – it is how we grow as humans - and debate and questions help me to do this.?I do not have all the answers.?I have not reached – and never will - a state of perfection!?There is always room for positive change.?And engaging in open and respectful debate with other humans, with their own unique views and experiences, helps me to understand, learn, reassess, question myself, change and grow.

However, I am sometimes asked why I differentiate myself in the way I do, and this question can be troubling.?

Why is my autism such a big part of my identity??Doesn’t this run the risk of building barriers rather than removing them??Doesn’t highlighting my difference in this way … highlight my difference??Would it not be much better to focus on the aspects of the human experience that we all share – rather than our differences?

As well intentioned as these arguments may be, I find them troubling, and I worry they come from a position of privilege, and that they may indicate a lack of empathy.

If the ‘norm’ has suited you and you have benefited from it, and you are unable to understand that the experiences of others are less positive, ?then yes – I can see that you may think emphasising difference is unnecessary – and may be counter-productive.

My ideal is to live in your world - a world where everyone is treated with the acceptance and respect that you have experienced.?Everyone.?And then our differences – all of them – are immaterial – and we all get the same opportunities.?

But we are a very long way from that ideal.

So, I must make my autism part of my identity.?

This is so I am visible.?We cannot effect change without understanding – we cannot achieve understanding without being visible and sharing our experiences.?This is a personal choice, and I respect the choices of others who wish their differences to remain private.?I do not want anyone to feel they must ‘out’ themselves – your choice is your choice based on your own lived experience, and I respect that!

And I make my autism visible because I need to.?I am extremely privileged and had access to diagnosis services so have a formal ASD diagnosis – prior to this my experience of the workplace was extremely damaging to me.?So, I need to be visible at work to survive.?I do not have a choice.

And I make my autism part of my identity because for the first time in my life I now feel part of a community!?I have spent most of my life excluded – to be part of a community now is a wonderful and joyful experience!

As part of my workplace survival journey, I was recently offered a Workplace Assessment. A good thing, that works towards achieving understanding, ?and I applaud my employers for finding a provider of this service.?For those unfamiliar with what this involves, it is a detailed discussion of my strengths and weaknesses, in a workplace context, leading to a set of suggested changes that will help me to thrive.?The process is facilitated by people with skills, knowledge, and insights into the autistic workplace experience – and my thanks go to Liz and Katie from the charity Red2Green, who took on this role, for their help, support, and advice.

However, the events leading up to the suggestion I take part in the assessment, the process itself, and ?its aftermath, have made me very aware of something that I had not considered before.?Something that has made me re-consider my openness to debate and questioning, and which again is driven – I believe – by privilege and a lack of empathy.

I must do something – repeatedly – that my neurotypical colleagues generally do not have to do.?

I have?to explain and justify why environments, activities , prevalent social and cultural structures and ‘business as usual’ working practices damage me.?And I must ask for permission for change.?Change that will result in my productivity and my efficiency and my well-being?improving.?And if this ‘plea’ for change is ignored, I will continue to be damaged.

Not only do I have to do this repeatedly, but when I do speak out, I am also frequently questioned – sometimes it feels like an interrogation - I may be met with suspicion and resistance, disbelief, and ultimately, I may be ignored.?It can, for me, be a hostile and upsetting experience.

I have had some time to think about this and what the potential reasons for this may be.

I believe that part of the reason is that to accommodate my needs means that change must happen.?If the status-quo is built around your needs, and you benefit from it, then you may feel threatened if someone asks for change that will allow them to compete on a more level playing field.?Extending your privileged position to others who have been excluded, ?may feel like taking something away from you?

And there’s the power of the ‘norm’.?Established working practices are often the default approach – because that’s just what we always do.?It takes far less thought and effort to just roll on and do what we’ve always done, rather than to take a step back and consider two very important questions.?Is what we’ve always done achieving what we want it to??Does what we always do exclude, damage, and hurt others?

And then there’s responsibility.?If we acknowledge that the ‘norm’ may not be achieving what we thought it was, that it disadvantages some, and in cases may hurt people, then we acknowledge we have responsibility for those consequences.??And if we then refuse to change, we are accepting that the hurt will continue.?And that we are responsible for that too.?It’s easier to just ignore, and continue the pretence that we’re all nice, good, reasonable people. The only thing necessary for the triumph of evil is for good men to do nothing.

And then the question of empathy.?My experience of neurotypical empathy has been ‘How would I feel in that persons place’.?This does not work if the life experiences of the other differ markedly from your own.?And this isn’t just the case with neuro-differences – I have found the capacity of many to truly accept that the experiences of another have been significantly different to their own, and what the consequences of this have been, very limited.

And finally, there is power.?I am questioning power.?I am saying power is wrong.?If the person in power has a command-and-control mind-set – then they just want compliance.?Questioning is a threat to their power!?And perhaps their ego.

These are mature questions to ask, and subjects to consider, and this is hard.?This level of self-examination, even on a personal level, takes maturity and an openness to accepting that the ‘norm’ is not healthy, or even productive, and to consider and be open to change.?And when scaled up to an organisation, with the myriad of personalities involved, it is even more challenging!

Throughout this article I have referred to how the ‘norm’ may hurt or damage me.?These are powerful ?and emotive words, and I do not use them lightly.?I have struggled to describe the impact many ‘normal’ things have on me, and what changes would help.?

In the past I’ve used terms like ‘accommodations’ – the legal term used to describe permitted changes in the workplace.?It’s a patronising word to use – and it feels begrudging – like someone is doing me a huge favour!

Then there is ‘preferences’ – but that sounds optional – like I have a choice.?And that’s the thing.?The only choice I have here is to make change happen, or to accept that there is a good chance I will die far earlier than I should.?This may sound overly dramatic.?But it’s true.

The charity Autistica have produced a report looking at mortality amongst autistic adults.?On average an autistic adult can expect to die sixteen years earlier than a member of the general population.?If the autistic adult has a learning disability, then they on average die thirty years earlier.

Part of this is that epilepsy is far more common amongst the autistic population.?However, there is more to this than just epilepsy, as our death rates due to heart disease and by ending our own lives, and other causes are also frighteningly high.?Autistica are trying to undertake research to find out more – but they speculate that there are social and cultural factors which contribute to this terrifying reality.

Having lived fifty-three years as an Autistic person I agree!

Society and culture are human constructs.?We decide, collectively, how our societies and cultures function, generally and in the workplace, which has its own social rules and culture.?We can decide to change them.?Or not.?And if not, we must accept that our refusal to change excludes and hurts people.?Damages them.?Contributes to their potential loss of a significant percentage of their life.

At a fundamental level my requests for ‘accommodations’ are requests for workplace social and cultural change.?Change that will help stop chronic and repeated damage.?Change that may reduce the likelihood that I will die sixteen years earlier than a member of the general population.

I mentioned at the outset that I like debate.?I like to be questioned.?It’s useful for me, and I enjoy it.?So why have I found being questioned about my requests for change in the workplace problematic?

What I find problematic is that this can seem like a conflict.?The response can be interrogative.?It can be, in some cases, almost incredulous.?There can be offence – a ‘How dare you’ attitude.?A ‘Well everyone else is OK with it’ response.?A ‘Well we let you wear noise-cancelling headphones or work from home – what more do you want!’ retort! And of course, it can all just be ignored.

I’ve explained some of my thoughts about why I think this may happen – and on an intellectual level I understand these.?And there may well be other potential reasons I’m missing.?But on a human level I just do not understand!?I just do not understand how humans can, apparently happily, continue down a path, when they have been told that it damages another human.

Sixteen years!

So, what do I want??How can we effect meaningful change??What needs to happen?

I believe the most important first step is to listen and to accept and to acknowledge the validity and truth of the lived experiences of others.??Without questioning .?

How can you know what another has experienced??How can you question their lived experience??What gives you the right to doubt them??To interrogate them!

How dare you!?

How dare you sit in your privileged position and force another human to explain to you why they deserve to be treated with acceptance.?Why they deserve to be included.?Why they deserve what you already have, and that they do not!?

How dare you delay and prevaricate and ignore.

How dare you force another human to repeatedly plead and beg for the chance of another sixteen years of life!

HOW.

DARE.

YOU!

I find myself returning to the Autistica report again and again. When I get tired of fighting – and this does sometimes feel like a fight - it reminds me what the stakes are – for myself and for my community.?And I get angry.?Read it.?If it doesn’t make you angry too, ask yourself some hard questions about your own position of privilege.?Your own capacity for empathy.?And what you would do for sixteen years of life.

https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf

The views in this article are my own and do not reflect those of my employer.

#autism #neurodiversity #autismacceptance