Assistant Editor , SHP

July 9, 2024

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bridging the gap

‘It can be quite empowering because once you know what’s going on, it makes sense’ – Mike Cowan-Jones on neurodiversity

Ahead of an SHP webinar on neurodiversity in the workplace, SHP’s Rhianna Sexton, spoke to Mike Cowan-Jones, Occupational Therapist on misconceptions of neurodiversity and provides advice on ways organisations can be mindful of neurodiverse employees.

SHP: Hi Mike, could you tell me how you got into your role as an occupational therapist?

Mike Cowan-Jones (MCJ): If I’m being completely honest, I fell into it by accident.

Credit: Alamy Stock

I had no idea what occupational therapy was about. So, back in the day when I was struggling to work out what to do for a career (I was doing my A-levels at the time), I was finding that everything I was wanting to do and was applying for, no one would accept me. For example, I wear glasses.  I always wanted to be a police officer but when I applied, they said ‘You can’t join because you wear glasses’.

It’s changed since then, but that’s how it was. So, I ended up speaking to a career’s advisor and said, ‘I don’t know what the heck I want to do but I would like to work with people’.

I was asked if I wanted to be an occupational therapist to which I said, ‘What’s that?!’ They didn’t actually know themselves but provided me with details of a local hospital to go and find out and asked that I tell them what the profession was about!  Even now, many people do not understand what occupational therapy is actually about.

From there, it dawned on me was that this was an interesting profession because although it is medicalised in a sense, it actually wasn’t.

Occupational Therapy (OT) is about the individual, and how their illness or disability impacts on them by preventing them living the life that person wants to live, whether it is relatively short span (because they might have been terminally ill, for example), or someone having to adjust to living with a long-term disability.

So, I really did fall into it purely by accident, and that’s where I still am. To me it’s about working with people and empowering them to achieve the lives that they want to achieve. There’s a better definition of occupational therapy from the professional body, the  Royal College of Occupational Therapists, but that’s how I put it.

To add to that definition, as occupational therapists we understand that human beings thrive on being purposefully occupied, whatever that happens to be; so any activity that is important to us and causes us to be occupied is important.  This can range from everyday activities that most people take for granted (such as getting washed and dressed) through to engaging in work or getting into education. It can include fulfilling the role of a parent and as a family carer.  Whatever it is that’s important to that individual, that is what’s occupation is about.  My job is about giving people the skills to achieve that role.

As a healthcare professional, we get trained about autism, about ADHD and so on, and I thought I knew about these conditions.  Since having two daughters who have been identified as autistic, though, I have realised that there are a lot of aspects of neurodiversity that I did not know about and I’ve certainly woken up to the fact that there is more to neurodiversity than what is taught in many areas!

I realised that I wasn’t doing autism and neurodiversity any justice at all because I wasn’t listening to the lived experiences of neurodiverse people properly.

SHP: What is your definition of neurodiversity?

MCJ: That is possibly one of the hardest things to define.

First some background.  There’s two broad umbrellas that people refer to:  there’s neurodiverse and there’s neurotypical.

Neurotypical is the way that society expects you to cope with most things, so (for example) you should be able to get yourself up in the morning, get somewhere on time, and be able to socialise appropriately (this includes making all the appropriate comments, understanding different facial expressions, knowing when to talk when not to talk etc).

For someone who is neurodiverse, the skills that neurotypical people take for granted is more of a challenge. For example, the expectation that I need to sit still and pay attention can be difficult to achieve. When you consider the experience of someone who might have Attention Deficit Hyperactivity Disorder (ADHD), to sit still for that long is very challenging.  So to concentrate for 45 minutes to an hour is also going to be tricky.  For an autistic person, being able to read social cues such as facial expressions and tone of voice can be difficult.  Even when judged to be successful by neurotypical colleagues, the tiredness and fatigue associated with this can often be overlooked by neurotypical colleagues as they do not appreciate how much mental effort has been expended on this task, including the anxiety that the autistic person has that they may have got it “wrong”.

Autism is not a disease, it’s not an illness. It’s just a different way of the brain processing information.

There are advantages to being neurodiverse.  Attention to detail, analytical skills and spotting when things just don’t look correct are some common examples.

It has been proposed that we are all on the spectrum to a certain extent, even if we consider ourselves to be neurotypical. But neurodiversity is a lot more extreme and, for someone who’s autistic, sensory needs are greatly amplified.

“We need to adjust the environment so the neurodiverse community and the neurotypical community can cope better.”

So, if you can imagine when every seam in your sock is irritating, where the label in the back of your shirt is irritating, the brightness of the lights in the office is intense, or all you can hear is the tick-tocking of the clock, you are now getting an insight into the world of a neurodiverse person.

It irritates you, but you have to try and suppress that in order to function in the environment that you’re in.

And then on top of that, there may be difficulties in interpreting facial expressions perhaps or taking things very literally.  (“Put that idea on the back burner”?  What exactly does that mean?!).

Then you doubt yourself. Did someone just tell me a joke? Should I laugh at that? Should I not laugh at that? If I say that now, am I going to be appropriate?

For many people who are neurodiverse, they mask.  Masking is the skill that means the individual is suppressing how they are really feeling just to convince others that they are coping with this throughout the day.  Masking does not mean that they are coping.  Unfortunately, masking can be difficult for others to identify so colleagues will assume that their neurodiverse colleague is coping well.  They are not.

They’re coping to get through work.  Then, when they do finally get home and they’re allowed to let everything out, people at home misinterpret the neurodiverse person’s lack of engagement or their expressions of frustration as something personal to them and say; ‘Well, you grumpy git! Why are you doing this? Why are you angry at me?” or “Why are you so lazy?”

The neurodiverse person is not angry at their family member.  They are not being lazy. It’s actually that the efforts of getting through the day have caught up with them and now they can let their true feelings out.  They may be physically and emotionally drained from all that effort to get through the day.  Their tolerance levels have been completely depleted.

So, we need to do more to understand that behaviour, including giving time for people to reset. We need to adjust the environment so the neurodiverse community and the neurotypical community can cope better.

Now these are things which, from a training perspective, I try to adapt to as much as possible. Traditionally, many trainers will make the comment “put your phones away” and “don’t scribble”. Whereas I say “if you need to have your phone out because you need to play on it, go ahead. That’s perfectly OK, so long as it helps you to engage”.

If the lights are too bright, providing everyone else agrees, we can keep them down low.  We’ll put more breaks in which can help people feel more settled and focused. To me and to many neurotypical people, it’s not a big deal, but it can be very enabling to some neurodiverse people I work with.

We also need to be careful with the language that we use. In one session I made a comment in the training session about an exercise to be done, and someone literally took me at my word from what I said, and I suddenly realised that it’s not that they got it wrong, it was because I hadn’t made it clear about what I really want them to do.

I suppose neurotypical is how we expect everyone to behave “normally”. Neurodiverse is when you don’t fit into that. We don’t all fit under the one umbrella.

SHP: How do people who are neurodiverse approach you to cope with this?

MCJ: It all depends on whether they have a diagnosis or not.

For many neurodiverse people, once they are assessed, it can actually empower them as they can be provided with things such as a sensory profile, which in terms of autism is identifying what things you find particularly difficult from a sensory perspective.  Bright lighting, for example.  Or background noise.

If you’ve been assessed and you know what things are challenging for you, then you’re empowered. You can go to work and say: ‘Look, you need to know that this is me.  I’m autistic.  Let’s consider what reasonable adjustments can be made to support me in my employment’.

For employers, there are two pieces of legislation called the Autism Act, where there has to be reasonable adjustments made for individuals who are autistic.

There’s also the Equalities Act, which talks about protected characteristics such as disability, in which case more adjudgments can be made. So that’s brilliant.

Getting the diagnosis is important, although some people will argue against having a diagnosis as they consider it is a label, for which there’s all sorts of psychological theories about why labelling people is wrong.

But I think it can be quite empowering because, once you know what’s going on, it makes sense of all the things that have been a struggle up to this point.  Many autistic friends tell me that they have always felt different and, for some, have felt that they did not fit in with others.  The diagnosis has given them a reason for this and has given them validity to be who they are rather than having to fit in with others.

My difficulty is with people who haven’t got a diagnosis because it means that I’m often picking up on the cues that (to me) suggest that they could be neurodiverse, although the person I am with may not see or may not believe that they are showing signs of neurodiversity.

“I would genuinely encourage all employers and employees to take an autism awareness course.”

Sometimes a person may mask and not even realise it, thinking it’s normal to have to do this. So, the first part is definitely having that insight.

And sometimes that takes someone else to notice. Maybe someone who’s been on an autism awareness course.

Credit: Alamy Stock

This is so important.  Even if a colleague has not got a formal diagnosis, it does not mean that they are not neurodiverse.  Clearly it is not for us to give a diagnosis but for colleagues just to have recognition and to be supportive so that when that individual in the workplace is having a really bad day and everything’s getting on top of them (perhaps uncharacteristically – because they can no longer mask it), their colleague notices and understand why that person may be presenting as snappy and aggressive.

That individual might need to have space, and an opportunity later for reflection.  Let them know you can see they have been stressed and offer reassurance.  Ask if there may be anything in particular that has been troubling them.  But please don’t pressure your colleague for an answer.  They may not have one at this point in time, or they may not want to discuss things with you right then.

So, I would genuinely encourage all employers and employees to take an autism awareness course.

A lot of autistic people are intellectually very clever and able. That is, providing they’re in the right environment.  The right environment isn’t just the physical environment, it’s about the emotional environment too.

A common misconception is that people may think having autism means you can’t be empathetic or do not understand other people’s emotions.

That’s not true. A lot of autistic people over-empathise, because they’re so worried of misinterpreting what they view are the emotional and social cues, they become really tuned in to someone’s emotions. They really care and this that can wear them out as well.

SHP: What, do you think, can be improved in the workplace for neurodiverse people?

MCJ: I think there’s a couple of things.

Firstly, there an awareness of it that needs to start within education.

I recently hosted an education panel at the Disability Expo this year, which is all about inclusivity, and it’s important to get people recognising that everyone is different, early on in life.

“Making people aware is the way forward”

There’s something which happens in the human brain called neural pathways – these neural pathways never go away, and the more you do the same response to whatever that stimulus is, the stronger and stronger the neural pathway gets.

So, if someone’s had a lifetime of learning that someone is different, but that this means they are ‘weird’, or this behaviour is challenging because the person is ‘just awkward and anti-social’, then that’s already embedded in. If we can start early on, we can start to get the positive neural pathways towards neurodiversity embedded instead and change this perception by society.

Making people aware is the way forward, but another thing that can be done relatively easily is for all of us having more of an open discussion between employees, employers and our work colleagues.

We all need to feel comfortable enough to speak out and say, ‘This isn’t right’. And it might be that individual doesn’t know why it’s not worked at that point, but at least we can start that conversation.

Understanding why a person might be working somewhere and keeps getting distracted because the radio’s on in the background or maybe they are struggling to work in an open plan office with lots going on. If an employer can recognise why this may be difficult then that is a start. Perhaps an autistic individual will get a sound proofing booth to work in or they’re allowed to keep at least one earbud in while they’re working, so that they’ve got something to distract them.

Lower the intensity of the lighting too. One of the things that is relatively easy to do for many people is just to review the lights in the workplace – does it always need to be the bright fluorescent lights? It can be changed.

Simple things like that, but the key thing is – and this is where empowerment is so important – that an employer listens to them and says, ‘we value you, so what’s going to help support you?’.

That’s all that’s needed.  And that is what I do as an occupational therapist and a trainer.

As a sidenote: It’s always nice to hear from people so if anyone wants to e-mail me ([email protected]) I’m always happy to have a conversation, or also via Facebook or Twitter too. Search @mikecowanjones or @armsrehablimited.

You can sign up here for SHP’s forthcoming webinar, You, me, and diversity – working better together – Are you bringing out the best in your entire workforce? – which is on neurodiversity in the workplace, taking place on Wednesday 10 July at 11:00AM BST.

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