Profile: we need to normalise neurodiversity

Caroline

Caroline Eglinton is head of inclusion at East West Railway Company and the government’s Disability and Access Ambassador for the rail industry.

Living with both Cystic Fibrosis and ADHD, she’s a passionate and inspiringly open advocate around all things disability, neurodiversity, mental health and non-visible conditions at work. Despite some people considering these topics to be uncomfortable, she pushes herself to talk about her lived, personal experiences because she believes that this is the way to shed the stigma.

Having herself only recently been diagnosed with ADHD, she has a unique perspective on what ‘good looks like’ when it comes to embracing neurodiversity at work.

We caught up with her to find out what it’s been like sharing her ADHD diagnosis with her employer…

So you identify as being neurodivergent, is that right?

Yes, I was diagnosed with ADHD when I was 39, after strongly suspecting that I may have the condition for around a year.

What made you think you might have ADHD?

There are a lot of things about me that I would describe as ‘quirks’. Some of these I just see as part of who I am and don’t cause me much hassle – but some, like finding it really difficult to relax because my mind is always on the go, do impact on my life and during the pandemic seemed to be magnified.

ADHD symptoms in women can often be misunderstood, sometimes mistaken for stress or anxiety, and some of the common signs of ADHD were showing up in my life very often.  Once I started to realise that the things that I really did find difficult – for example keeping up with laundry at home, or delivering project work on time at work – were because of ADHD, I was able to feel a sense of relief, explanation and be able to release the intense shame that I really held with me my entire adult life.

I was very good at masking my struggles. I can bet you that no-one ever guessed that the reason that I wore so many new clothes was not because I was a fashion fanatic, but because I found it really hard to keep up with laundry, organise my clothing and think of what to wear to work! I would often on impulse buy clothes to wear to work without even trying them on.  It took me a long time to realise that my coping mechanisms weren’t helping me manage my life, but were making it worse.

My quirky and somewhat chaotic life was manageable until my daughter came along – she’s three-and-a-half – and then it became much harder. After her birth I felt overwhelmed a lot of the time, but couldn’t put my finger on WHAT exactly was overwhelming me or how I might start to work on improving that.

Since my early 20s I’d sought out help for what was diagnosed as depression back then, but now in hindsight was due to ADHD burnout and exhaustion. I started doing some online research about ADHD, as we had been developing an employer guide about neurodiversity at work and I noticed that some of the descriptions were hitting very close to home. I finally had the light-bulb moment when I did an online test for the ADHD and it came out as a very strong likelihood.

So you recognised yourself in the guide?

Absolutely – I have to be honest that before I realised I had ADHD I hadn’t really considered that my whole life was shaped by and through the experience of being neurodivergent.  I am very happy to be neurodivergent, it’s who I am – I wouldn’t change it!

What’s been your biggest learning since being diagnosed?

For me it’s around being able to let go of the shame. Before, I carried around this really heavy shame around the things I found difficult and used a lot of energy to mask – sometimes unconsciously. Finally having answers as to why I am this way, as well as access to the information and resources on how to make life easier on myself has been a brilliant learning curve.

How has your diagnosis helped? Has it helped?

Whilst I strongly suspected that I had ADHD for around a year, getting a formal diagnosis really did help me. Importantly, ADHD is highly treatable and medication can help to manage symptoms. However you can only be prescribed the medication if you have had an official diagnosis.  Whilst the medication doesn’t make ADHD “go away” it has really enabled me to improve lots of areas of my life, including focus and attention.

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Did you go through a proper assessment?

I did. When I realised that there were limited routes to an NHS diagnosis in my area I opted for a private assessment. In total it cost me around £1,300 for the assessment and getting started on the medication, and now I’m in the very fortunate position of having my medication supplied via my GP.

And how do you support your wellbeing yourself, too, because neurodivergent people are often more likely to develop mental health problems?

For me, it’s been liberating to talk about it. I am very open and talk about ADHD as a very ordinary thing about myself, just like how you might mention in passing that you are a parent. I think it’s important to make this a very ordinary subject to talk about – it helps to remove the stigma.

I recall telling some friends who happen to be school teachers who said ‘gosh Caroline, we’d never have known that you’ve got ADHD because you’re nothing like the four-year old boy in our class’, so it’s important for me to keep talking about how ADHD looks different in women.

What do you think employers can do better?

I think the key thing that employers can do is to enable conversations on the subject, to make it an easy everyday subject to be able to talk about. Create safe places for the discussions to happen and allow people to share their common experiences.

How did it go being open about your ADHD diagnosis in your new job?

It’s actually worked out really well because somebody else I spoke to on the first day told me that they had ADHD. I couldn’t believe it when they told me because I’ve never had anyone come out and just tell me straight away like that. Which is silly really when you consider that one in seven people may be neurodiverse.

What about catering for specific needs at work?

Flexibility and workplaces adjustments are key!

The other thing I did was seek support through the Governments ‘Access to Work’ scheme. They paid for me to have access to an ADHD coach which was really useful for me.

What’s your biggest concern about how neurodivergent people are treated at work?

It’s great that there is much more awareness of neurodiversity in the workplace now and that people are more open to talking about it. However, there is still room for far more education on the topic and building more understanding of the breadth of neurodiversity. I would like to see more resources provided to non-neurodivergent colleagues, and managers in particular so they understand how to recognise neurodiversity in the workplace and how best to work with people so that everyone can thrive. Ultimately this will lead to organisations and businesses being more productive and happier employees all around.

How do you think employers could improve the recruitment and onboarding process for neurodivergent people?

We need to breakdown the barriers to recruitment so that neurodivergent people (and others) can get in the door in the first place, rather than having a specialist programme for them. That means thinking differently about how employers interview and assess people. It also means that candidates can be open about their neurodiversity, or not.

You also have the genetic condition Cystic Fibrosis. Have you noticed any differences in how people view ADHD in comparison to Cystic Fibrosis?

The main difference is that when you tell someone, even an employer, that you have CF there is a tendency for them to feel sorry for you, an element of concern or worry.  I haven’t noticed that happening with ADHD. Because I have CF, I’ve always had access to reasonable adjustments at work which have helped me in relation to my ADHD too.

Any final words that you think it’s important employers and wellbeing professionals read about neurodiversity at work?

There is a misconception that being neurodivergent is really wildly different from everyone else and that it is going to take a lot of resources to employ neurodivegent people. To that I say, “why worry? You’re already employing neurodiverse people!” I think the conversation should be around how to best support people and help people to thrive. It comes back to normalising what neurodiversity is and the benefits it can bring.

You might also like:

Managing neurodiversity: look beyond the label to the individual

Rethinking Your Job Descriptions – A Way to Promote Inclusivity in the Workplace

Why Neurodiversity and Wellbeing Need to be Considered Together in the Workplace

New Webinar: How to Inclusively Support the Wellbeing of Neurodiverse Colleagues in a Hybrid World of Work

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