Neurodivergence – navigating who I am

Sarah Ward (she/they) has always felt different but didn’t quite know why. Here, Ward explains their long struggle to being diagnosed neurodivergent – an intersectional journey into misdiagnosis, stigma and stretched healthcare services

People who identify as cisgender female or were assigned female at birth (AFAB) are most likely to have their neurodivergence (ND) misdiagnosed or underdiagnosed, particularly those with autism and attention deficit/hyperactivity disorder (ADHD).

I know this from personal experience.

When several big life events hit me in quick succession, they left me struggling to cope. I’m 45 years old but only really started to question things about myself after my son was diagnosed both autistic and with ADHD. Some people call this AuDHD – and it’s more common than you’d think.

I did massive amounts of research – using what I now know are my special interest and hyperfocus ND tendencies – finding descriptions in which I recognised myself.

For example? Racing thoughts – I often have a million ideas for projects buzzing in my head. Impulsive actions – taking on more than is humanly possible. Easily distracted – constantly going off on topic-based tangents. Interrupting people – noted during a past work-training course. Craving excitement – I loved the thrill of a new project. Cognitive hyperactivity – this last one resonated most; my brain never shuts up.

Neurodivergence – diagnosis gaps

Females are much more likely to be diagnosed with anxiety, depression or other mood or personality disorders than with having an ND. Why? Because diagnostic criteria reflect research conducted primarily on males, particularly on male children. They also don’t consider differences in presentation by sex or gender, research on which is only now beginning to emerge.

Also, I didn’t fit the initial descriptions because I’d learned to internalise my hyperactivity and mask my social struggles, which is incredibly damaging. This is also another reason why there’s huge mis- and underdiagnosis of UK adults.

It doesn’t help that adult services are woefully under-resourced in the UK; it’s a real postcode lottery. Devon’s waiting lists are around five years for autism-spectrum conditions (ASC) and three for ADHD.

Although I’m gender non-binary, it was accessing female-focused information that convinced me to ask my GP to refer me. And it was only at an event run by the Esteem Team, my wonderful local child and adolescent mental health and wellbeing community-interest company, that I learned about the Right to Choose scheme, which allows you to request a provider from an area with shorter waiting lists.

I’m being assessed and should have an outcome in six months. I’ve already waited more than a year. Estimates suggest that two to three per cent of people are autistic and around ten per cent of people have ADHD. If the number is higher, that’s an awful lot of people sitting around in workplaces who may or may not know.

Add other ND such as dyslexia, dyspraxia, dyscalculia and Tourette’s – and the fact that people can have combinations, aka co-morbidities, of these – and you start to understand that many workplaces are failing to meet so many people’s needs.

Schools recognise and cater for special educational needs and disabilities. We urgently need similar approaches at work.

What if you’re not neurotypical?

I don’t yet have a formal diagnosis – and due to waiting times, a lot of people don’t and so self-identify – but throughout my life, I’ve either struggled with or drawn strength from certain differences I have.

Before I put my full, authentic queer self out front and centre I thought it was that. But something was still missing. I still feel othered and that I don’t fit in. I’ve done well academically and professionally in water and environmental management – but more recently, I’ve also struggled with work.

When you’re ND and have commitments – whether as a parent, carer or parent carer – you realise that without support, you can’t do everything that neurotypical people seem to take for granted. If you’re struggling and undiagnosed, you may conclude that you’re just not good enough – which pushes you to try even harder.

And that’s a game you can’t win.

Systems aren’t inclusive or equitable. I’ve struggled with multiple life events and intersectional trauma. LGBTQIA discrimination, workplace trauma, changing jobs, separation, divorce, the pandemic, losing a parent, moving home, PTSD and health anxiety – any one of these is difficult to deal with. I’m left with burnout and chronic fatigue syndrome.

It shocks me to learn that most people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in my region are cisgender female/AFAB and a quarter of people with ME/CFS are also ND. Which brings us back to mis- and underdiagnosis.

Add to the mix changing hormones during puberty, pregnancy or pregnancy loss, childbirth, perimenopause and menopause, all of which can also have a substantial impact on ND symptoms.

Little wonder people who are both ND and cisgender female, AFAB, transgender or non-binary have the highest rates of self-harm and suicide. And no wonder so many of us are struggling without support in a world not set up for difference.

Build neurodivergent teams

My ND got worse when perimenopause made it impossible for me to digest alcohol, so I stopped drinking. This removed a way to self-medicate that for years had helped me to cope with social situations. Alcohol helped me to mask. Without it, I could no longer do that. Not masking made everything so much more exhausting.

I find it harder to cope with work events, especially when my ME/CFS and other conditions slow how I process and understand spoken and written communication.

Pre-Covid, I don’t think I went to one event or conference that was ND-friendly or even ND-aware. Noisy, smelly, busy refreshment areas can make it harder for ND people to network.

Get to conference, navigate the venue, find sessions and people, process information, meet basic needs for food, drink and toileting, and manage your sensory and executive functioning needs – and then network with masses of people of varying communication styles and skills? Incredibly difficult and exhausting.

At a networking-training event I once asked the facilitator how I was doing. They said, “Brilliantly, you’re doing everything right.”

“So why do I feel I’m acting all the time?” I replied.

Now I know why; I was masking. Most conferences left me so exhausted I’d hide in toilet cubicles or escape outside. If I did push through, I’d feel exhausted afterwards. Don’t get me wrong, I loved geeking out and meeting new people; but I wished it could have been easier.

How many conversations and opportunities to collaborate with amazing colleagues have I missed because I – like so many other ND people – find critical industry events so difficult?

I’ve watched people breeze through industry events, feeling that it’s just me who struggles, that I’m not good enough at it. Now I understand that it’s the form my ND takes.

I haven’t attended a large in-person event or conference since Covid. Events – and getting to them – are rarely ND- or ME/CFS-friendly. And I’m not willing to put myself through that right now.

However, working from home during and since the pandemic, I’ve lost skills I’d built up to cope with my ND. Rather than commuting and experiencing social contact in the workplace, I’m doing everything on MS Teams, which has lowered my tolerance for and ability to interact. I haven’t been able to build that back up because of my other conditions.

Working from home can be great, but ND people may need more support to not feel isolated.

Find mental-health support services

The most difficult thing about all of this has been not knowing – not knowing why everything suddenly got so difficult, especially when I hit burnout. It’s crucial to have the right information – to navigate the circus of systems and services to find the right support.

I’m getting help through Access to Work, including from mental health support services. You don’t need a diagnosis to access these services – they’re needs-based. Thankfully, my employer has been understanding, supportive and accommodating.

Once you do know, you can step back, put your health first and everything else second. That’s hard – especially as a passionate environmentalist who sees how the world is going to hell, who understands, all too well, how much must change.

It’s even harder when you realise that you don’t know and can’t play the game by its rules – how often social factors trump ability or merit.

There’s a yawning void in most professional social networks for justice, equity, diversity and inclusivity – nowhere more so than in our own sector.

I dream of a big, intersectional water and environmental future in which our industry and its networks understand, represent and accommodate people of all characteristics and disciplines. I believe the WEM sector needs cultural shifts as much as – and maybe more than – new ways to build infrastructure.

Civil engineers and social scientists can’t deliver these shifts alone. It will take all of us – as citizens, consumers, customers and custodians of our planet – to do that. It takes a scientific, social and spiritual journey to become self-aware enough to realise our limits. To say, “No more”; people, planet and not-for-profit only.

That’s a huge leap. It will take all of us – and all of our knowledge, kindness and understanding – to make it happen.

How to support neurodiversity in work and beyond

Educate yourself about ND in all of its forms, looking at attitudes and behaviours, and at symptoms. Don’t expect ND people to educate you
Educate yourself about mental health and about signs of overwhelm and burnout. Atypical burnout, including autistic burnout and hyperfocus burnout, is different to workplace or parental burnout
Train equality, diversity and inclusion, and mental-health first aiders
Establish peer-support groups and networks and support them; don’t put yet more burden on ND people
Be trauma-informed. Most ND and marginalised people have suffered trauma and have triggers. Safe spaces at work, where people can be their authentic selves, require employers to understand, support and accommodate trauma-informed approaches
Understand that some things are more difficult for ND people. That can include executive functioning, sensory requirements, social interaction and communication. Coping strategies include masking, camouflaging, straight-line thinking, special interests, hyperfocus and limiting task switching
Understand that ND people can present with emotional dysregulation, rejection-sensitive dysphoria and injustice intolerance, particularly for ADHD
Support lived-experience leadership – if you don’t know what that is, find out
Support ND staff’s strengths but don’t take advantage, take them for granted or abuse their strengths. ND people can develop unhealthy coping mechanisms such as people pleasing or not establishing boundaries
Take the initiative. Many ND people, diagnosed and undiagnosed, don’t know what they require to meet their needs or make life easier. A supportive employer helps all members of staff to find out
Make in-person and online meetings, events and conferences ND-accommodating, not just ND-aware or ND-friendly. Work with qualified professionals to co-design ND-accommodating spaces and events
Promote Access to Work and Access to Work Mental Health. If you think someone needs it, whether or not they have a diagnosis, offer them access to an occupational therapist to assess and recommend what they need
Overhaul your company structures and cultures to embed equity, diversity and inclusion. Question yourself and your organisation. Are you doing enough? What more should you do?
Promote a culture of openness, kindness, curiosity and understanding
Support intersectionality – very few people are just one thing. Offer resources that recognise this and signpost that support
Work on ND recruitment last – only when your workplace works for your existing ND employees will new ND employees thrive too