Autism and Work

Below is an account of a time when other people’s poor communication, and my lack of understanding of myself, led to me having to leave a job for the sake of my health.

Workplace bullying isn’t restricted to autistic people, but it is very common. A perfect storm of social expectations, misunderstandings and being misunderstood, can make for a hostile environment. 

There are other issues and barriers to work, there were plenty of other sensory struggles that I’ve not covered here as I’m focusing on the social side. 

Here is my story. It’s nothing big or flashy, just a slow decline to the point of being unworkable.

A few years ago I worked in an office. One day IT sent out a request asking everyone to try to use their Messenger system, instead of email, to reduce storage demands.

I didn’t just agree out of duty, I was pleased. A lot of my work involved being on the phone. I find this exhausting and draining. I can’t work out people’s speech as well if I can’t see their lips move. I often ask for repetition, it makes me feel incompetent. It makes me a worse communicator. 

So being given an instruction to use a system that suited me perfectly was great.
I started using it. 
Being a rule-follower, I used it for work. It became a great way to get information from people. I found myself communicating better with those I worked closely with, but who were based in a separate office.

Then one day my manager appeared behind me. I hated that. I’d be focused on work and would always jump when torn away from what I was doing. My work also involved confidential information, and not knowing who was there, made me panic that they might have seen something they weren’t allowed to see.

She peered over my shoulder. “I see you’re using Messenger.” She said, “That must be nice.” 

Then she walked away.

I was confused by the exchange. But then, people say strange things in the name of small talk, so I promptly forgot about it and got on with my work.

I always made a point of working when sat at my desk. I didn’t join in the talk about soap operas and Strictly Come Dancing. I’d try to in my breaks, even though I had no interest at all. But at my desk I was working. I had an excuse not to.

Time passed, duties changed, I took on extra work as the business expanded. I was happy to do it. But soon it became clear that my work load was too great. 

I didn’t see this as a judgement. It was just a fact. All the work was new, there was no way of quantifying it until it started. So I did the sensible thing and asked for a meeting with my manager about it. I was on flexi-time, and was steadily accruing hours as I kept on top of the workload. But I was also a parent working full-time. I couldn’t keep taking from my own time indefinitely.

The meeting didn’t go well. I was accused of shirking work I didn’t want to do. I was told that I was often seen chatting on Messenger instead of getting on with my job, “You didn’t even stop using it after I pointed out I had noticed your usage!” She said.

So there it was. She had been bubbling away, fuming at my insubordination for months. To my mind I had obediently followed all requests. Her assumptions about my use of the work systems and her assumptions that I had the ability to understand that saying, “I see you’re using Messenger” was not a statement of fact, but an instruction, left me completely confused and shocked by the whole scenario.

I managed to respond that I used Messenger for work-related requests for information. I offered to pass on work that I enjoyed, rather than work that I knew was less important (which is what I had logically suggested), but I could see all the signifiers of anger and she clearly wasn’t listening to me. 

Dismissed, I left her office utterly confused. I had been told to “find the time”. That was the solution to my increased workload.

It wasn’t a logical one. At least not for me.
I really tried. I tried to stay on top of everything. I came in early. I hit all my deadlines for the important things. I prioritised my work.

Outside of work I was a shell. I’d get the children in bed as early as I could and then climb under the covers myself and hide. In the quiet and the dark I would recharge for the following day’s battle. That’s what life had become, a battle. All spare time was wasted on preparing for the next onslaught. There was little joy.

After I dropped the children at school and daycare each morning, I would cry my way to work, then try to hide my tears. I had a lot of “out-of-season hay-fever” that year. 

There were two things that I would look out for on my commute. The first was a man who was always out walking as I drove in along a quiet country lane. He was tall and frowny, with grey hair and a gnarled walking stick. 
After passing him hundreds of times, I had started waving. It seemed odd not to recognise a fellow human I saw daily. He would wave back, or lift his stick in salute. Sometimes his face would uncrease and smile. Not often, but sometimes. It became one of my few positive daily social interactions. 

The second was the sea. I would drive past the sea, and the morning light would bounce off it and into me. It would settle me before the hostility. I would breath deep and sigh. Then drive on.

It wasn’t long before I got called in by senior management. Again I stated (as a fact) that I did not have the time to do certain tasks. I listed off the additional work added to my role since I had begun. He seemed surprised by the amount of it, but it didn’t change his view. I was being awkward and rude by saying that I didn’t have the time. I had to find the time. 
He then told me there had been complaints about me. About my lack of “team-playerness”, about my curtness, about my arrogance. I left hollowed.

I could do no more. The next day a doctor signed me off as utterly burnt out. I had let my children down by destroying myself for the sake of a job.

My mind slowed. It stayed slow for a month. It hurt. I couldn’t make sense of the logic of any of it. I was completely lost. My work had always been right. People from outside my department praised my accuracy and hitting of targets. They told me personally that no one in that role had been as consistently productive as me. 

Yet my own management disliked me and liked me less and less the more I did. One of the criticisms levelled at me in the weeks before I left, was that my voice was too low, and they couldn’t always hear what I was saying when I was speaking to other people. Not to them, but when they were trying to eavesdrop. That was a fault of mine.

I never went back. I handed in my resignation and was lucky enough to find a new job very quickly. I was exhausted. I was broken. But the new place was kind and supportive. They embraced what I could do. They were careful about workloads. They listened to me and smiled.

A little while later I heard that the person who got my job was off with stress. 
Shortly after that they turned my role into two full-time posts. 

It was a dark time for me. There were concerns that I had missed due to taking things literally. That was combined with poor management and communication. It all happened pre-diagnosis. 

My fault lay in assuming that people are as honest as I am. I assumed that it was my work that mattered most, and not my interactions with those around me. I assumed that I would be believed if I asked for help. I assumed that if there was an issue, I would be told outright that there was an issue. They’re all fair assumptions. If the world was built for me they’d be the truth. 

It was hard walking away. I felt like I was letting everyone down. I felt like a failure.
I felt slightly less bad when (still signed off with stress) a colleague from another department contacted me to say that the work was just piling up on my desk, waiting for my return. That’s no way to treat an employee who is ill.

My new manager later told me that no job is more important than the person doing it. 

I still wonder if my man with the gnarled walking stick noticed I was gone.

Unexpected Side Effects of Autism

There are ways that I am far from the perfect parent. I struggle with the school-gate networking. I find changes to plans hard. I need down time after social occasions, I can’t run from one to another constantly.

I also struggle with certain routine tasks. Shopping is one of them. Eating regularly is another.

My children help regulate my meal times. They become a necessity, a framework for the day. Most cooking doesn’t interest me. It’s dull, repetitive and requires me to concentrate, so takes up processing power. On top of that I dislike the textures of certain easy crowd-pleasers like pasta.

Food is a battleground on some levels. On others, it’s a joy of patterns and pleasure.

Back to this morning. It’s the summer holidays, the children are all home and stirring, husband away with work, and I remember that we ran out of cereal the day before, and I forgot to get more.

Someone else might get us all up and dressed and traipse off to the shops, but I’ll do anything to minimise the number of shopping trips I have to do. I have set lists set up for online deliveries, and I still find the ordering hard.

I go through my mental list of possibilities. I look at the patterns, I play with mixtures of ingredients in my mind. Before I’ve brushed my teeth I have a plan. We shall create muffins.

So that’s what we do. Because I like to lecture and learn, I talk as we all mix. The smallest child is dappled by flour in seconds, there is laughter. There is a basic chemistry lesson. There is a discussion about carbohydrates and sugars and balance. 

They are energised by their food in a completely different way. They ask questions. No matter how silly they are, I will answer them. I learn from their perspectives. They energise me.

Another day we might experiment with quantities. Not to create the perfect muffin, but to demonstrate the balance. To see what happens. To learn. For fun.

This morning we ate muffins in the sunshine, warm from the oven. Then we watched the birds. We found an iridescent beetle and followed its trundling path. We poked a rock with a stick and watched the sky through the leaves of the trees. We pondered about whether the dogs were telepathic or obedient. We bickered about whose turn it was on the swing. We watered some stones. We stopped to point at a train in the distance and then waved at it, even though no one could ever have seen us. The waving was for us.

Then I took a few minutes to be a proper grown up and hung out the washing in the sunshine.

Job done, we turned into pirates. Each billowing sheet was a wave to run through. They broke, cold and clean as we crested and rode the lines. The movement of water in fabric, the textures, all memories of my childhood, now shared with my children.

We giggled. Proper, stupid, breathless glugs of giggles. As the fabric flapped. 

This morning I could have been sensible. I could have been organised and bought muffins. Making them isn’t what made today. Making them is what pushed me into creativity. And what pushed me into making them? The restrictions my autism gives me.

There are times those restrictions drive me up the wall, and then there are todays. Days when they force out the best of me. When they create the memories I want to hold on to forever.

The Autistic Community 

One of the most incredible things that the modern world has given us, is a new way to communicate.

I want to talk about an emerging group, the Autistic Community. When I first got diagnosed, I didn’t really know what to do. I had no idea that such a community existed.

I was still me. I was still the ugly-duckling, trying to work out my place in a flock of ducks. I now had a reason for why I was on the outside, but that didn’t let me in. 

I used the time to work through who I would be now. Which parts I would keep and which parts I could shed. I had spent a lifetime learning to be a type of person that I wasn’t.

What had I achieved? I had hidden. I had been seen to be coping. I had lived a half-life, a pretence, an existence. I had not been whole. I had hollowed myself. And because of that hollowing, I had not been helped. Everything I had tried to do to make life easier, to fit, to be a duck, had left me less duck-like, more exhausted, and more alone.

I started chatting to some people on a website. They were all in a similar boat to me, either late-diagnosed, seeking diagnosis or wondering if they needed to. I was struck both by our differences and our similarities.

And then I decided to start this Blog. There was so little out there about women like me. So few voices. I wanted to write the things that would have helped me. I wanted to reach out.

I wondered if anyone would read it. I decided it didn’t matter. I took to Twitter and I tentatively and embarrassedly tweeted my first link at the marvellous Sarah Hendrickx, who I had recently had the great pleasure of hearing speak.

And then there they all were. One by one these amazing people commented and shared and reached out to me.

The Autistic Community is warm and accepting. It is honest and stark. It is desperately trying to be heard as a voice in its own right. It should be heard. It has a lot to say.

There is boundless empathy. There is kindness and insight. There are so many different views. We are all over the world. We are everywhere. Some of us are afraid and hiding. Some of us are out and proud. Many of us carry battle scars and feel the weight of our masks. 

Even those who do not feel a part of a group have so much to say. So much to teach us. I have learned so much from the endless patience of so many. Being natural researchers I am always blown away by the incredible knowledge base. Everything ever written about autistics will be read voraciously by autistic people.

And again and again we find such similar experiences echoed in our pasts.

It’s a relief to be around people who understand autistic motivations. It’s a relief not to be alone.

I’m not someone who can interact regularly. I find even social media exhausting after a short time. I worry that dropping in and out the way I do is antisocial. But I know that that’s not a judgement the autistic community makes.

So whether you’re reading this because you’re pondering whether or not you might be one of us, or you have an autistic child, or you’re interested in autism as a professional or a private person, feel free to drop by and say hello. The #ActuallyAutistic tag is fascinating. 
You can find me here

We’re not that good at small-talk, we don’t keep people at arm’s length to check they’ve learned how to discuss the weather appropriately, we just throw out ideas, we share research, we ask for help, we connect.

There was no test of my social skills before the autistic community welcomed me in with open arms. I don’t think I can ever thank them all enough. They are perhaps my biggest safety net. I wasn’t a duck, I can’t be a duck. Perhaps I shall learn to be a swan.

Autism is a Normal Neurological Variance

What is Autism?

It’s a social processing condition.
It’s a different way of processing sensory information.
It’s a different way of interfacing with the world.

What isn’t autism?

Autism isn’t a learning disability. 
Autism doesn’t mean a low or high IQ.
Autism isn’t a behavioural problem.
Autism isn’t a person trapped inside a mental cage.
Autism isn’t a lack of empathy.

Fundamentally, autism isn’t the enemy.

When you hear about the poor child suffering from autism, you’re hearing a perpetuation of a misleading and hurtful narrative.

We don’t call neurotypical people high-functioning or low-functioning. We don’t look at their intelligence and use it as an indication of how well they are. We don’t assume intelligent equals fine, and unintelligent equals problematic. We look at the whole person.

Autistic people are no less whole. We are no less complicated. If you wouldn’t categorise the majority of the population as high or low functioning, then you can’t caregorise us in that way either. It doesn’t work.

Autism is a normal neurological variance. Some people are left handed, this is a normal neurological variation. Some people are double-jointed, this is a normal physical variation. Some people have green eyes, this is a normal physical variation.

Society seems to be stuck in the throes of panic about the sudden appearance of this normal neurological variation.

“Where has it come from?!” We cry, “Why is it here?! How do we stop it?!”

It’s not new. That’s the first answer. Those of us whose autism came with an average IQ, just carried on as best we could. We were the quiet child who liked reading and didn’t socialise much. Or we were the party animals who always had a drink in hand to override the processing issues.

Those of us who had below average IQs, who couldn’t hide, were hidden for us. They were institutionalised. Locked away. Their families were told to forget about them and move on with their lives. 

I do wonder, if we could magically find every autistic brain in the world, we’d find that autistic IQs were largely representative of neurotypical ones. That we have as many geniuses and average people as everyone else. That there isn’t necessarily a link between braintype and intelligence. That instead the link is between visibility and the ability to create our own coping mechanisms. 

Those autistics who are unable or unwilling to mask because it is hard work and goes against our own drives, will always be the most visible. And possibly the most happy and true to themselves given the right environment.

This week the autistic community coined a new term: Autistic-Ninja. An autistic person who has learned enough social rules to mask well enough to pass for normal when they choose to.

It was coined whilst discussing the idea that perhaps adult, autistic women who are seen to be coping, should not be given a diagnosis.

We were discussing it, as a group of adult autistic women. There was complete consensus (and given that we are all very different people, with only a neurological-type in common, this can be a rarity!). How do they know that she’s coping? How can someone see what it is that she needs and make that decision for her?

We were discussing this exert.


Habbe has since tweeted that the intention was to leave the choice up to the autistic woman. Which is great.

But of course the choice lies with the individual. She’s either seeking answers and help, or is out getting on with her life unaware of any issues. Coping means coping. It means there are no major issues that would lead to seeking help in the first place.

How would that work in practice? Would she be denied the answer or lied to? That’s where the ethical question comes into place. That and the statement demonstrating a perpetuation of the stigma of autism.

Autism isn’t a stigma. It’s not a puzzle piece. It’s not any one behaviour. It’s simply a way of seeing the world. 

I would love to spend a day as a neurotypical, but probably not longer than that. Autism gives my world such colour. It connects everything with everything else. It is patterns and interconnectivity. 

Sometimes I wonder if the reason neurotypicals spend so much time seeking human contact, is that they don’t feel connected to the world in the same way that I do. They don’t see the patterns we all make as we clumsily bumble through life together.

It wasn’t so long ago that left-handed people were forced to write with their right hand. Now it’s an accepted difference. Left-handed scissors were created so that they weren’t disabled when it came to cutting things up. It now seems really wrong to force someone to do something that doesn’t come naturally to them, just because that’s how the majority are built.

Doesn’t it?

Safety Nets 

When I first got my diagnosis of autism, I was assured by the experts that nothing was different. I was still the same me that had walked through the door.

And I agreed.

When I told family about my diagnosis, I told them it didn’t change anything, I was still me.

And they agreed,

When I told friends about my diagnosis, I said, “None of this fundamentally changes who I am”.

And they agreed.

Off we all wandered in our own directions, happy that I was still me, they were still them, and the world wasn’t fundamentally different.

I was yet to find one of the most profound differences being autistic made to my life. I speak a lot about how Autism is the key to understanding myself, about its positives, about the wonderful life-experience being so involved with my senses gives me.

But lurking in the background is something else.

You see, back when I was “normal”, I’ll call those days Before Autism, I was pretty supported. At work there was an employee assistance programme that offered us normals counselling and support for free.

Back then if I wanted to pay someone for therapy, that was always an option. Back then, if I was struggling with stress then I had options.

I’ve mentioned my naivety before too. I knew support for autistic people was lacking, particularly where I live, particularly in rural, sparsely populated areas, but I didn’t quite realise what that meant.

Before Autism the counselling on offer wasn’t perfect for me. I remember trying to work out what the counsellor wanted from me, and giving them that. I remember describing a Shut Down in great detail and being told simply that brains don’t work like that, before being given a coping mechanism that didn’t fit with my thinking.

In some ways it helped by showing me what didn’t work. It encouraged me to work out my own techniques. Once I had my diagnosis and the key to what my real problems are, that made life a whole lot easier.

Deep down I believed that there might not be extra support. I’m painfully optimistic. Irritatingly so at times. But I’d read enough to suspect that it was true.

What I wasn’t expecting, what really smacked me in the face, was that not only is there no extra support for me, the support that was in existence, the support that everyone takes for granted now, isn’t there either.

I now have less support than I had Before Autism

I now know that certain things like CBT (Cognitive Behavioural Therapy) should be modified for autistics. That there are therapies that may help deal with anxiety. That talking to someone trained in the way my brain works (or even better, an actually autistic therapist!) could help. 

It all seems a bit of a no-brainer. Of course they would help. They help other people, why not me?

Why not me?

Because I’m autistic.

And no one in my area has the training. Not even the option of paying for it.

Not only is there nothing extra, but the support network that I had taken for granted Before Autism is gone.

I have no safety net in place. 

Right now I don’t need it, but what happens if, when, I do? What happens then?

Did you know that so-called “high functioning” autistics have a suicide rate 9 times that of the average population? Link Here 

That’s terrifying. I’m going to repeat it. Autistic people like me are nine times more likely to commit suicide (not attempt it, succeed at it) than everyone else AND we have a reduced support network.

So when I say, “There’s no support!” I’m not saying, “There’s no support above and beyond the level everyone else has!”, I’m saying, “There is often less support for adult autistics than there is for the general population!”

There are solutions. Solutions that would make counselling accessible. Include Neurodivergent Adjustments for all those training in Mental Health services. Include Autism as a necessary module, covering actual treatment. Make us boring and mainstream, make your services our services.

What we have now is not good enough. The choice between no counselling from responsible therapists who are unwilling to give advice when it could cause harm, or counselling from the potentially dangerous resource of those who are “willing to give it a go” with no understanding of autism.

The system is playing Russian Roulette with the Mental Health of Autisics.

I’m not asking to be treated as a special flower. I just want my safety net back. 

Please?

Curing Autism

    

Can we talk about a cure?

There’s a real problem when it comes to Autism, and it’s not to be found in us autistics. It’s to be found in the focus of funding.

Time and time again I see people struggling to get diagnosed, and then struggling when there is so little real support post-diagnosis.

The vast majority of funding appears to be spent on finding a cause for Autism, and studying what it really means neurologically.

I’m not saying those things shouldn’t be funded, but that leaves a tiny percent left for actually supporting people.

I’ve recently seen a disturbing comment by a parent of an autistic child, berating an autistic adult for calling themselves autistic, “You wouldn’t call a child with cancer a cancer child!” is the argument.

I wonder if they know how hurtful and offensive that is? I wonder if they realise that they’re comparing a life destroying illness with a brain process. My brain process. My autism isn’t a cancer on my soul. It’s a profound part of who I am. It’s the way I see the world.

If you take away cancer, that is a good thing. If you take away my autism, who am I? Because I can guarantee that I would not be me.

Taking the cancer analogy further, if all terminal cancer patients were treated like autistic people, there would be an outcry. “I’m terribly sorry about the symptoms and the pain, but we cannot provide you with pain relief, counselling or practical supports or anything that might help slow your decline, since we’ve focused all the funding on finding a cure. Isn’t that great?”

But I don’t want a cure. I want support for the negative symptoms that my autism causes. I want education for society in what being autistic means. 

Essentially I want to be the happiest version of me possible.

When you talk about curing me, not curing my negative symptoms, you are talking about exterminating who I am. You are talking about taking away the way I connect to the world. My fascination, my obsession, my joy.

When I say dealing with negative symptoms, I mean those that actually harm the autistic person or those around them. I don’t mean training a child not to do a harmless stim because it looks weird. 

If we admit that ABA (Applied Behavioural Analysis) works to change behaviour, but in the same breath say that it’s the autistic child that must be forced to behave normally, then we’re missing a trick. Why squash the autistic child? Why force them into behaving in ways that will cause them exhaustion and harm? Why not turn it out onto the rest of society? Force acceptance? 

If you think the idea of forcing acceptance on society is appalling, but forcing acceptance on an autistic child is for their own good, then perhaps you need to re-examine your thought processes. 

I needed help getting diagnosis. There wasn’t any help and it took 18 months to get my first appointment. There’s no funding.

I need help dealing with sensory overload. There isn’t any help for me. There’s no funding.

I need help dealing with my anxiety at times. There isn’t any help for me. There’s no funding.

It’s just not there. It should be.

Autism is not cancer. Autism is not the enemy. Autism is a normal neurological variance. Just like being left handed. We need the right scissors, or rather the left ones. 

We need alternative methods of communication. We need understanding. We need to be treated with respect.

We are an integral part of this world. There are millions of us. It’s time acceptance meant just that. Accepting that we are here now we’ve been noticed. Accepting that it’s ok to change things for the minority when it won’t be a negative change for the majority.

Accepting that some of us want to be called autistic, and not “with autism”, just like we want to be called left-handed, and not “with a sinister preference”.

When you correct the way I describe myself, you are using language in such a way that suggests autism is stigmatising. 

I am Rhi. I have blonde hair. I have children. I have a husband. I have autism. I have a passion for writing. 

I am Rhi. I’m blonde, I’m a mother and a wife, I’m autistic and I’m a writer.

Both are fine. Telling someone they should use one over the other is not fine. It means you’ve decided certain terminology is negative, and instead of fighting that negativity, you’re accepting it.

It’s time we saw Autism as normal. It’s not a fad. It’s not fashionable. It just is. It’s time to accept what is, and work on making the world a better place. The time has come.

Daisy Chains

In a field of wheat I’m a daisy.

The stalks grow close and suffocating,

Their shade starves me,

Their paper touch deserts me.

When the wind blows and they move in waves

I cannot bend with them.

I watch them move together,

Beautiful and swirling,

As they jostle my leaves.

I am a daisy in amongst wheat.

And people ask me why I do not grow.

And people ask me why I do not bow.

And people ask me why I cannot flow.

In empty grass I would lean

In the sunshine and smile.

In empty grass I could turn 

And watch the day pass.

In empty grass you could find me

For your daisy chains

And you would see my worth.

But here in my wheat field

I will only be judged on my wheatiness.

What use am I in a field of useless?

Smothered and covered and silent and lost?

Value and value not value but cost.