When I am disabled

Autism, including Aspergers, for better or worse, is classed as a disability. We could debate the rights and wrongs of that for a virtual eternity, and probably never arrive at a solution. A disability by the medical model: definitely no; although autism is often co-morbid with more physically disabling conditions. By the social model: yes. Yet by this argument it should be possible, in the right environment, for autism not to be disabling at all.

I am very fortunate. With increasing understanding of how my mind and senses work, and the things I need to stay healthy and functioning, I’ve been able to mould my life around those needs. I live alone, in a quiet area, which gives me enormous control over my home environment. And one of the most crucial benefits of my job is the autonomy I have over my working hours. With flexitime, as long as I put in the right number of hours per week, no one minds if I leave 2 hours early one day and make it up the next. Learning to use this for day-to-day self care and management has made a very positive difference to my life. I would go so far as to say flexitime is as important as any of the reasonable adjustments I’ve requested, possibly even essential for me to function effectively. And probably 90, 95, even 99% of the time now, I do function effectively. Day to day, I don’t feel “disabled”.

Sometimes, though, it strikes home.

I feel like I’m doing really well at the moment. Building on the things I learned over the past two years of crises, I’ve been picking up new challenges at work and pushing forward with my career aspirations. I’ve been overjoyed remembering the sheer satisfaction of working hard and being repaid in actual success! After those endless months of running as hard as I could just to stay where I was, sometimes it does seem too good to be true.

But this sort of thing has a cost. Using expensive social, professional and executive functioning abilities, even to have fun, drains my energy much faster than I’d like. And I’m still really bad at scheduling enough time off work or switching off when I’m busy and need down time. So inevitably, there was a meltdown. And unfortunately, it just kept giving.

The meltdown itself was fairly subdued. I knew it was going to happen halfway through the last choir rehearsal before our concert. The organ was too loud – so loud it hurt. I had to time my breathing, exhaling slowly through the pain, like pushing weights you’re struggling to lift. The hand drier in the ladies bathroom made me scream and cover my ears. In the two hours between the rehearsal and the concert, I didn’t talk. I hid in my coat, clinging to the passenger seat of my friend’s car as if my life depended on it, and cried. That was all. That night the organ didn’t hurt. We made something beautiful. The next day I didn’t do much. But it was still too much. I needed more time.

I went to work on Monday. I didn’t have to talk much. There weren’t any meetings in my calendar. I remember looking at the previous week and going, “my God, that’s why I had a meltdown”. I thought briefly about how to learn from that and see it coming in the future, but it felt like too much effort – I was too tired. I’d do it another day.

Tuesday came, and with it an opportunity: one of those small, everyday chances that when followed repeatedly add up to something that matters. I took it, ran with it, nailed it – boom! By 11am, I was wrecked. Wednesday didn’t look good. I caved in and booked the afternoon off. I couldn’t bring myself to take the day.

You know where this story goes.

On Friday morning I arrived at my first meeting of the day, a whole and complete autisticly overloaded wreck. It was classic “low-functioning” stuff. Rocking, avoiding eye contact, staring at the table or the floor. Muttered echolalia – lots of it. “Run, run, run”. My favourite word when I’m anxious, uncomfortable, embarassed; when I want to get out. “Run”.

I didn’t manage a full day at work that week. People saw things they shouldn’t have seen. Yet no matter what my echolalic mind was screaming at me, I couldn’t actually run. It just wasn’t a solution that occurred to me. Never mind that this is what paid sick leave is for – there’s no category, you see, for autistic overload, in the tick-boxes you have to choose from on why you’ve called in sick. So clearly I’m not allowed to go home sick if I can’t spell my own name. There’s no rule for that. It must not be allowed.

This is when I am disabled.

Next week I will have to explain to my colleagues why they saw what they saw. I will have to reassure them that this is a temporary thing – that it’s like being jet-lagged or having the flu. That even though I can be staring at a wall one day, crying, stumped by dilemmas that a five-year-old could overcome, that next week I can be even brighter than they are. That this is what it means to be autistic. I will have to swallow my pride, again, and trust that they will not judge me. And then I will talk to my manager and we will make a “rule” that I can follow, so that next time I will cope.

As long as next time is the same.

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Unashamed

April is coming, and my Facebook feed is full of articles. Autistic friends, begging their connections not to “light it up blue” this coming month. And this cover of a huge step forward in autism acceptance from BBC, welcoming Julia onto Sesame Street. A muppet with autism.

Julia isn’t “a muppet with autism”, though. Julia is autistic.

For the first time, today, I mind.

A little background. It’s been a turbulent couple of years. When I first crashed into the autistic community, bruised, alone and frightened, the “person-first” debate didn’t much interest me. Why would I care what people called me? I was still grappling with the monumental implications of this diagnosis for my life, my future, my prospects for growth and happiness in this world. What did it matter whether I “had Aspergers” or “was autistic”? The earth-shattering, devastating reality was the same. Words, gone with a careless breath, were less than wind.

But now. Now I am more than I was. Now I know what autism means, for me. Now I know that my autism does not limit what I can achieve – only influences the methods by which I can progress. That it is not the characteristics of autism itself that stand between me and what I want from my life. What stands in my way, as an autistic person, is so often the attitudes of other people. Always intimidating, and sometimes insurmountable, I know now that these barriers are not of my own making. I have weaknesses, and I have strengths; not because I am autistic. But because I am human.

Autism describes me. Autism is a part of me. Autism is my strength and my sensitivity, my empathy, and the strange inability to express those feelings. Autism is the laughter and the tears that bubble up inside me when I need to show my love. Autism is why I spin and why I sing and why it gives me joy. Why would I want to disown that? Why would I want to separate that from me?

I am autistic. Unashamed.

Team building: the working Aspie’s nightmare!

If there’s one certainty about working in an organisation with a reasonable budget, it’s that at some point, inevitably, someone will decide we’re just not working together effectively as a team. Maybe we don’t talk to each other enough, so information isn’t getting to people who need it. Maybe we’re not helping one another cover deadlines, so things are being missed. Maybe the attitude in the office is toxic and back-biting, with liberal helpings of aggression and defensive behaviour heaped out in steaming spades on innocent bystanders. It doesn’t matter what the cause. The solution is the always same. Clearly, we need to do team building!

Perceptible shudder.

So let’s talk about team building.

The traditional selling points of team building seem to be built around the following:

  • People are inhibited in the workplace! They need a different environment to show their true selves and learn to shine.
  • Destructive team and workplace habits are ingrained and reinforced by the working environment. The team needs to be shaken up to break those habits.
  • People need to get to know each other on a personal level to develop the trust they need to work together.
  • If people do something non work related together, it will show up their hidden strengths, which will build and improve the way they work together as a team.
  • Everybody here loves each other really; we just need to be somewhere other than work to show it. (OK, this one I may be paraphrasing slightly. But the essentials are valid!)

I won’t comment (at this point) on the validity of those particular assumptions and views. But what tends to result is something like this:

  • A team outing to an exciting new location
  • Doing a community service type activity together
  • Learning a new, non work related activity together
  • A consultant is brought in to do “psychological” team building exercises
  • Some element of “trust” in colleagues is at some point required

Which is all well and good from an able-bodied neurotypical perspective*. But let’s take a look at this from an autistic angle.

First, the exciting new location: how do I get there? Will I be able to drive? Can I get a lift – but then what if I have to leave early? I’ll be disoriented, I probably won’t be able to find my way around. Can I get a map or layout in advance? Where are the toilets? And the schedule will be different – can I get a copy of that? Will I know what to expect? When will I be able to find food? Will there be a quiet space? No? Whimpers quietly.

On community service: this is guaranteed to bring out the worst of all the above, and more. Simple activity? Think again. We need instructions – explicit instructions – and there’s 100% certainty here that we’re going to have to beg. No one can quite believe that a person would need guidance on how to do a litter pick – but believe me, if we’re asking, we do. And then there’s the endless hours of unstructured socialising in a work based hierarchy. It’s hard enough to develop our original “rules” on the differences between work and social interactions. Trying to apply “work social” rules out of context can be close to impossible.

How about learning or trying a new activity together – surely that’s OK? We’re breaking down the hierarchical structure, based around experience or expertise, to something where – in theory – we’re all starting from the same fresh slate.

Except that we’re not. Everyone “learns” at different rates. But I need quiet, isolation and the safety of a familiar environment in order to learn. I need to be prepared, to know basically what to expect. I can’t ask the right questions the first time around. Of course, giving me this information in advance wouldn’t be “fair” on everyone else. So this will be a day of quiet desperation, attempts to hide behind the rest of the team as I struggle to make sense of the simplest new concepts in an alien environment. Incredulous stares, pity and condescension as my “stupidity” is exposed. A day of being labelled and judged for things I can work around quite effectively whilst doing my job, yet stand out like blood blisters in isolation. That gutwrenching moment when I realise nothing will be the same after today. How will this impact my professional repuation? When will I be able to look my team in the eye again?

And the “trust-building exercises”, oh my! There are parts of me that I’ve learned to keep hidden. Things that make “normal” people uncomfortable; things that I’m rightly afraid of being judged for. Such exercises – based around the naive yet pervasive illusion that everyone shares the same basic comfortable “normality”, a common ground – are designed to draw these things out. Fear of humiliation and exposure are uppermost in my mind.

Lovers of team building, if you are working with anxious, autistic or otherwise “different” people, please consider the following:

  • Team building is the ultimate in terror for a productive (or quietly struggling) Aspie.
  • Unfamiliar places, new activities and disruption to routines are extremely difficult for us. We need to know things in advance that other people might not need, in order to cope.
  • There is a massive risk of meltdown or shutdown in traditional team building environments.
  • We don’t want our colleagues to see this! We’ve spent a lifetime building a professional demeanour, learning to deal with the unexpected as our job requires. We don’t want to damage that reputation.
  • You don’t want our colleagues to see this – especially yourself. Trust me. It’s ugly.

Team building lovers, I beg of you, show some sensitivity. Don’t make us do this. Allow us to retain our dignity and professionalism. Find some other way of building team trust and cohesion. But not like this. Please, not like this.

*Actually, I have it on reliable authority that “normal” people also hate team building. As well as suggestions on actually useful alternatives. But that’s another story 🙂

Pacing

On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

Executive function is…

Sometimes I wonder why it takes me so long to get anything done. And then I remember…

Executive function is opening the jar before poking the spoon at the jam.

Executive function is boiling the kettle before trying to pour water onto the coffee grounds.

Executive function is pants, socks, shorts and running shoes … in that order.

Executive function is what lets you make dinner on the fly, without arranging all the ingredients first in order of use, neatly lined up across the countertop. Executive function is what saves 15 minutes for the oven to heat up; what gets dinner to the table on time. Executive function is being able to decide what to eat of an evening without having a plan in advance.

Executive function is being able to start a new task without rehearsing it over and over in your mind beforehand.

Executive function is stripping the bed before starting the wash into which the bedclothes were supposed to go!

Reduced executive function is why autistics need time to plan ahead for new activities.

Reduced executive function is why we can shy away from commitments or, despite our best intentions, may fail to follow through.

Reduced executive function is why we need to know miles beforehand about even the smallest changes in routine.

Reduced executive function is why so many struggle without the proper support to make it through school; to hold down a job; to manage our own homes and lives.

Reduced executive function is one of the main things that holds us back from achieving our potential.

Despite reduced executive function, thanks to careful planning, I am enjoying a unexpected flurry of wintertime productivity at work.

Despite reduced executive function, I have signed up for a frightening number of non-routine seasonal activities, artfully placed for maximum disruption to eating routines – and so far am on track to follow through on all of them!

Despite reduced executive function, with cards sent and presents waiting only to be wrapped, I am almost ready for Christmas.

With foreknowledge, we can achieve. Given control, our differences are strengths.

Happy Christmas everyone!

Disconnect

Someone at work today asked how I was coping with the long nights. People are aware of my SAD. Offhand, I said I’d been OK up until about the last week or so, but I was getting a bit tired now. No big deal.

Then I thought for a minute about when time got away from me. Maybe it was a bit more than a week. Maybe two. Perhaps three.

I no longer have a sense of time.

I remember the moment I first felt panic that the minutes were slipping away. It was in the middle of a Saturday morning, on my way to the shops, when that afternoon I had somewhere to be. There was that horrible sinking feeling in my gut, chasing the hours that slid through my fingers, realising how completely I’d misjudged. I panicked. Rushed my shopping, called a taxi. Lost the taxi. Found the taxi moments before it pulled away, a breath away from being just one more no-show. Deep breaths, shaking, as we crawled through traffic on the interminable journey home.

I made my afternoon appointment, overloaded, but invisible. No one saw it: not for a moment; not the merest flicker. I passed, exquisitely. I paid with the Sunday. It wasn’t enough.

Three weeks ago.

In winter, I cannot cope with overload. In winter, I do not have the capacity to recover myself. There is not enough daylight, and not enough time. I cannot expose myself to the risk of uncertainty; I cannot allow myself to panic. I must be slow, quiet, centred. I must be calm.

On that Monday morning I went into survival mode. The plan had already lost the non-essentials several weeks before. But this was the morning when I drew a breath, and relaxed. I forced myself to slow down, to breathe. Not to stop, but to keep moving, no matter how slow. Don’t fight it; just be. It didn’t matter if I was late. It didn’t matter if I didn’t show. Nothing mattered, but to be calm. To keep moving. One step at a time.

It’s a curious feeling, to be centred in the eye of the storm. I am slow, while the world spins. I am quiet, while the world screams. I am; and somehow, strangely, the world is not. Steadily, methodically, I move through this madness without feeling. I am calm. I do not connect. Displaced from reality, I am serene.

I do not want. I do not feel. I am not hungry or thirsty. At night I wait passively for sleep that takes hours to come. The choice to begin each day is one I no longer allow myself to make; for if I allowed myself that choice, then I would choose wrong. I know this, without feeling sadness. I feel only the weight of my self as I sleepwalk, dreamlike, through the wild cold winter. I still know that the winter will end. I still remember what it was like to live.

I do not stop. I must not stop. Until it ends.

One step at a time.

Are you afraid of the dark?

This time of year can mess with my mind! Sometimes it’s exhaustion, sometimes depression. At the moment, apparently, I’m a child again – the idealised version: happy and eager, with the sort of “can do” attitude that comes from having no concept of limits. But as a child, I was afraid of the dark.

It’s strange, coming home in the night time. Turning off the main road and into my quiet side street, where the street lamps don’t work and the darkness looms like a yawning cave. Some of the houses have outdoor lights that switch on and off as I walk past.

Unlocking the front door, I turn on the lights. The house is silent.

I go inside. Flick the switch in every room. The dim brightness of artificial light is eerie in the empty quiet. There’s a funny feeling in the pit of my stomach. I switch on the radio to drown out the silence.

6 pm. It’s early, but the darkness says it’s late. I cook, eating dinner to the sound of the radio, the stove cooling noisily in the background. Closed blinds keep out the night.

7:30. I curl up on the sofa, watching TV. I’d like to read, but that would mean going back to the silence. Why is it this cold stillness, so welcome in the daytime, seems so threatening at night? I turn up the volume to fill the empty darkness.

11 pm. Lying in bed, I stare blankly up at the ceiling. Moonlight streams in through thin curtains. Wrapped warm under weighty covers, comfortable, I drift towards sleep.

Moving lights; and a shadow rises, suddenly, from beside the bed. I jolt awake, heart pounding. Focus. Switch on the bedroom light.

Of course, there’s nothing there. I hear the neighbours’ car, pulling slowly into their driveway.

I know it’s ridiculous. I go to sleep with the lights on.

When good (wo)men do nothing

“I’d never know if they were autistic or just being rude”.

To the person who said this to me, from a position of power, as an excuse for not putting into practise anything they’d learned: here is what I wish I’d been able to convey at the time.

As an initial aside: yes, you could know. They might even actually tell you; but otherwise, you’d just have to make an effort. Not unlike the effort I make with non-autistic people, every single day. If you’re needing some ideas: how about judging that person on what they’re trying to do, rather than how they “look” in the moment or the exact words that they say? You could try questioning those immediate, intuitive conclusions you jump to and ask yourself: did they really say what I’m reacting to, or did I interpolate that into the space between their lines? You could step back for a moment and consider: is it possible that what they said just now isn’t actually about me? Could I, perhaps, be reading too much into this? Should I be taking this so personally? I know that kind of thinking isn’t easy – it does take a bit of patience, and you might have to practise a few times before you get it right. But you can do it, if you try.

But what I really wanted to tell you is that your attitude, right there, is the reason that people like me need medication. It’s the reason we’re underemployed. It’s the reason we feel valueless, despite our unique skills. It’s the reason so many of us are driven to suicide.

Let’s think for a moment about what you just said. Your words said:

  • It’s more important for me, from my position of power, to judge, than it is for you and people like you to be treated fairly
  • I need to be able to label people as “rude” more than you need to be able to communicate
  • Upholding my neurotypical standards as the default in every interaction is important enough to justify ostracising anyone who cannot achieve them

And behind those words, in context – even as an autistic who struggles with implications – you’ve told me a whole lot more. You’ve told me that despite what you’ve learned about adult diagnosis rates and the stigma of disclosure, you still won’t treat anyone without an openly declared official diagnosis with anything other than prejudiced contempt. You’ve told me that you’ll continue to judge everyone according to those unwritten neurotypical “rules”, regardless of their ability or the impact of your judgements. Better that, after all, than to let someone “get away with” being “rude” to you. You’ve told me that in your “normal” social sphere, everyone is guilty until proven innocent.

One of the reasons I didn’t say anything at the time was because I know, deep down, that there is nothing I can do to change your mind. I know you know the facts – we went to the same training course on autism. I know that you went of your own volition, because you were interested in learning more. And yet I see that interest is skin deep for you: purely, trivially academic. You do not see that there are people in your world, like me, for whom this is a lived reality. You will not acknowledge that those affected by these issues are living and working invisibly, close beside you. And so you are incapable of putting the facts you’ve learned towards changing your behaviour or challenging your prejudices, to make us invisible people that tiny bit safer in an inhospitable world.

You are not the first. Nor will you be the last. Your attitude is as endemic as it is poisonous. People like you are the reason so many autistics suffer from anxiety; from depression; even from PTSD. Nice people; good people; decent people; who nonetheless ruthlessly perpetuate suffering by their quickness to judge and unwillingness to learn. Suffering that is all the more criminal for being so easily avoidable.

Someone once said, “the only thing necessary for evil to triumph is for good men to do nothing”. You heard the facts, you followed the implications, and you did nothing. You are complicit in this evil. You are responsible. You.

Can we really be Disability Confident?

I’ve recently come across this scheme which the government is promoting to make businesses more “Disability Confident”. On the fact of it, and in fact to a certain depth, this is enormously positive. The webpages are not a gimmick: they state in clear language the benefits to the employer of having good disability related policies to employ and retain disabled staff, supported by facts and figures. In particular they emphasise the frequency with which this actually means retaining skilled staff who become disabled during their working lives. This is a huge selling point for employers, for whom recruitment of skilled workers can be an enormous expense.

There are three levels to the Disability Confident scheme: an employer can be committed, Disability Confident, or a Disability Confident Leader. The documentation is clear on what should be done at each stage to achieve and maintain the label of Disability Confident. The principles set out, in that they make good sense to me as a disabled person, are frankly above and beyond what I have come to expect from British culture today! If this means what it has the potential to mean, that we might be moving forward as a country from the Autism Act 2009, through the Equality Act 2010, to progressively stronger guidance and legislation to protect and support disabled people, it would give me real hope for my future. The kind of hope I haven’t seen since beginning to pursue a diagnosis, almost two years ago.

There’s only one thing that worries me about this scheme, and that’s the phrase “self-assessment”.

In the level 1 documentation, on becoming “committed” to Disability Confidence, only once is it suggested that disabled people should be part of the assessment process: to test that the employer’s interview process is accessible. The second level, of actually being Disability Confident, adds the requirement to “[value] and [listen] to feedback from disabled staff”, including taking appropriate follow up action. Things like “making reasonable adjustments” and “promoting a culture … where your employees feel safe to disclose” are positive statements of actions that a business can take in making itself a safe and secure environment for disabled people. The level 2 documentation, if adhered to, describes an environment in which I personally would feel valued, confident, and encouraged to work hard towards achieving my full potential. It’s all there. But it’s not until level 3, a “Disability Confident Leader”, that the employer’s culture and environment is subjected to any serious assessment by actual disabled people.

There are plenty of people I know – otherwise hardworking and decent people – who are nonetheless thoughtless and occasionally discriminatory on the grounds of disability. It is difficult, when the lived experience of disability is so different, and particularly in a culture that infantalises and persists in speaking for and over this “lesser” group, to learn to appreciate the perspective of a disabled friend or colleague. It is hard for non-disabled people to realise the urgency of “reasonable adjustments”, or the stark reality that not only is there such a word as “can’t”, but there are people they work with who are forced up against that “can’t” every single day of their lives. Until you know that – until you have felt it, through thoughtful empathy or lived experience – it is impossible to appreciate how demoralising that can be.

So I wonder how much, through self-assessment alone, this Disability Confident scheme will be able to achieve towards improving the experience of disabled people in the workplace today?

For any employers out there considering the Disability Confident accreditation, as a disabled person fully committed to the wellbeing of my own organisation, I would highly commend it to you. But I would encourage you also to ask some hard questions of yourselves that are perhaps not stressed enough in the documentation. I would ask you to engage actively with disabled individuals and any disabled communities within your organisation. Ask them what they need to do their jobs well. Ask them how easy it is to get reasonable adjustments, and to be fully confident that agreed supports will be in place when they need them. Ask them anonymously, and be prepared to hear their honest answers.

Because the truth is that, even with the best will in the world, you may not yet be Disability Confident. And if you want to become so, you will need to ask yourselves hard questions about the past. When a deaf employee requested an external palentypist, and you had to refuse because some information was “commercial in confidence”, did you take the time to explore possible alternatives? When a dyslexic employee asked for notes to be taken in meetings, because he struggles to parse verbal instructions, did you tell him that was just too much of an admin overhead? Did you consider the impact on the disabled employee: which parts of their job would become more difficult or even impossible to do without these supports? In the future, what would you like to change?

Disability Confident is a hugely positive step in a culture that undervalues disabled people and the work they do. But self-assessment, where any organisation can blithely state that they are already Disability Confident, is not enough. To become safe and secure places where disabled people can work and thrive, many employers will have to recognise harsh truths around where their processes are not currently working. An essential part of the process of becoming Disability Confident is inviting honest input from disabled employees, accepting criticism with humility, and being willing to change.

In the future, I look forward with hope to the example set by Disability Confident Leaders, and their efforts to make the working world safe and accessible for us all.

Scenes from childhood

Like many on the spectrum, I was not a happy child. Having supportive and loving parents, I was luckier than some. And I have seen some photos of me, as a very young child, smiling. But my abiding memory of the camera was always the gentle encouragement to stop frowning, to look happy. I was rarely happy.

My primary school years were a particular trial for me. Infant school is peppered with memories of solitary play, of watching from the corner of the playground or imagining wild jungle scenarios in my own little world. Quiet, strange, a little lonely, but mostly harmless. But in junior school, surrounded by peers becoming more and more aware of the social world, my strangeness could no longer pass unnoticed. Articulate on paper but slower in words, I was bullied mercilessly: first by older children, and then by my peers. The saying, oft quoted by my parents, that “words can never hurt me” provided no comfort. Sticks and stones I could have dealt with – those I could learn to fight – but somehow I could never get to grips with words. I remember my mother hugging me, telling me I had to try to be less sensitive: don’t let them see they’re hurting you and they’ll go away. I couldn’t hide it.

I was around 10 when I realised I could hit people to get them to stop. I learned it by accident one day: overwhelmed with the rage and shame of constant public humiliation, I just lashed out. This, I later found, was particularly effective against girls. Since I’d had a growth spurt by this point and was one of the tallest in my class, the verbal bullying I’d been defending myself against carried little weight with teachers faced with a cute little sobbing blonde pleading I’d hit her. But it was the only way to make them stop.

I don’t like to think about where this path would have taken me. Thankfully, my secondary school was focused on academic achievement and had an excellent anti-bullying culture. Having flared up a couple of times, and been met by peer behaviour of surprising emotional intelligence, the brutal lessons of junior school were quickly scrubbed out. But it’s sobering to realise the full impacts of being in an unsafe environment. However strong you are, eventually all you are left with is how to survive.

The lessons of childhood have a strange habit of popping up again in adult life. It’s easy to get cocky, thinking you’ve outgrown the vulnerability that pushed you to anger and violence. I thought that chapter of my life was over. I was wrong.

These past few months, I’ve been in a terrible place. From what is now a safer space, with hindsight, I can’t describe it as workplace bullying. But even though there was no conscious intent, the actions of this person and their treatment of me had pushed me into a place of desperate terror. Held ransom to social and communication abilities I did not have, there was nothing I could do to take control of my situation. Whatever I did, I couldn’t win.

As the months dragged on I grew to hate what I’d been turning into. I’d regressed into that space of desperation: of lashing out at the tiniest thing, seeing every challenge as a threat. On the surface I kept fighting patiently for support, trying not to scream the urgency while my self-care and home management abilities crumbled. But the constant performance took its toll. Work became the subject of my nightmares. With the threat of retaliation for autistic behaviours always poised over my head, fuelling the very distress that makes those attributes more difficult to mask, my position was precariously unstable. I felt – I was – unsafe. And all of the unhealthy attitudes and mechanisms I’d used as a child came back in full force. The positive lessons of my adolescence protected me in part: I didn’t hit, I didn’t shout. But I couldn’t sit still. I paced in meetings. I couldn’t make eye contact when the bully was in the room. I physically shook with adrenaline, with the effort of suppressing my anger and fear.

It’s been a few weeks now since the situation was diffused. This person and I no longer work closely together, and my line manager has been wonderful in helping me get back into a healthy routine. I’m no longer pacing and shaking in meetings. Things are settling down.

I’d like to say I’ve learned since I was 11 years old. And I have: I’ve learned many things. I’ve learned the importance of trusting my own lived experiences over the voices of authority. I’ve learned that nothing can be taken for granted. I’ve learned that patience through pain is the only way to get what you need. And the most powerful positive lesson of all: I’ve now learned that eventually, patience can work. Experiencing the outcome of patience and perseverence can only feed my confidence in pushing for future outcomes.

But I haven’t learned how not to be a monster in between.

Compassion, I think, is the main thing to take away from all of this. A deep understanding that behaviour and attitudes, of myself and of others, are often much less about the person and more about the environment they’re living in. A hostile environment makes monsters of us all.