Neurodiversity Celebration Week 2026: Lived experience, strengths, challenges, and hope

Personal stories from Essex staff

Jo O’Connor

1. About you

• When did you first begin to understand that you were neurodivergent?

Only recently in my early thirties! Growing up I always knew that I was different though and that I approached things in different ways.

• What words or labels feel comfortable to you—and which don’t?

I find it upsetting when someone might say I am (or those who are neurodivergent are) ‘awkward’, ‘challenging’, ‘picky’ or a ‘pain’.

2. Lived experience

• What has your neurodivergence felt like throughout your life?

It has felt challenging and often VERY contradictory.

• Are there moments or memories that particularly stand out as shaping your experience?

Recently I have started an apprenticeship alongside my role, which has been both eye-opening and extremely challenging. I do not know how I managed to achieve my first-class degree in History from Essex with no additional support! It has been a real steep learning curve for me and a conversation I have had to have with the training provider. I have recently started using dictate and read aloud as advised by my coach - not only in my course, but also at work when using programs like word.

• What strengths or superpowers does your neurodivergence give you?

It means I often feel a lot of empathy for others and can tell when someone is going through a challenging time without them saying anything. I see things from different perspectives – and challenge and question the status quo (sorry… but not sorry to my line manager and head of service for this!). I can also notice patterns or pick up miniscule errors and mistakes easily which can bug me (sorry to my family and line reports for this one!).

• What challenges do you encounter, and how do you navigate them?

You can often face microaggressions and stigma. People sometimes belittle your lived experience, with comments such as, ‘isn’t everyone neurodivergent nowadays?’. I try to educate others and explain my own experiences and challenge misconceptions.

3. Discovery and diagnosis (formal or self identified)

• What was your journey to diagnosis or self-identification like?

I am currently going through the process of getting formal diagnoses through the NHS – which is lengthy and somewhat stressful.

• How did the people around you respond?

It has been an enlightening experience for my family, and has made them understand me more.

People are often shocked when I tell them – and I often get comments such as them not thinking ‘someone like me’ would be neurodivergent.

As a manager and inspiring future leader I always try to be open and honest about my journey and the struggles I have faced. I champion EDI which leads others to feel empowered to discuss their own experiences with myself and enables it to be an open talking point at work and in my personal life.

• What changed for you after recognising your neurodivergence?

I became more self-aware of why I sometimes felt or reacted in certain ways. I felt more empowered to communicate why I might face challenges.

4. In daily life

• What strategies, tools, or habits help you thrive day-to-day?

Having a plan for the day to keep me on track….although I often ignore them! However, I try not to become too focused on plans, as it can make me spiral if others do things that alter them (…I know that sounds totally contradictory!).

I make notes on my phone, when ideas or thoughts pop into my head – so I don’t forget them and avoid interrupting others when they are speaking.

I try to take regular short breaks – and go for a walk at lunchtime around our beautiful Colchester campus when I am in the office. Being outside and as active as possible helps me thrive – and keeps me away from doom scrolling on TikTok!

• What environments or situations bring out the best in you?

When collaboration or problem-solving is needed!

• What barriers make life more difficult than it needs to be?

People not being sympathetic or understanding of my needs.

5. In school, work, or community

• How has neurodivergence shaped your experience in education, work, or social spaces?

I am very introverted, so it can take a lot out of me to be outgoing at work. This has led to me becoming somewhat of an expert at masking, which is extremely tiring and can lead to burnout. Bright lights and noisy environments can be challenging– distracting me and leading me to become overstimulated. I try to keep things out of my reach that I might fidget with, so I don’t distract others!

I struggle with spelling, mixing words up and articulating things verbally– which can lead me to spend longer than I want on the wording of emails, or reflecting on how I could have explained something better. I can also struggle with eye contact and sometimes come across abrupt or blunt without meaning to when communicating (due to my own preference for direct communication styles). 

• What kinds of support or accommodations have made a difference?

Having flexibility where possible to work from home or in the office dependant on what I am doing can be helpful. I like to work on campus as this gives me the structure I need to ensure I take breaks, go for a walk and don’t get too hyper focused! However, when I do need to focus on things such as data I benefit from working at home, or in a space alone away from distractions. I find it better to plan days or times in my diary to focus on task such as catching up with emails in my inbox – and keep this time clear from meetings.

I ask those around me to limit meetings to 45 minutes where possible, to allow space for a 15 minute buffer between meetings so I can have little breaks to get up and move around. I find meetings after 3pm challenging as I start to disengage with the day and become tired from masking, so to get the best out of me morning meetings are better. It’s helpful to have agendas prior to meetings and then notes following up on actions, so it is clear what is expected from everyone involved as well as sufficient time to process information.

• What would you love colleagues, peers, or leaders to understand better?

Not everyone’s lived experience is the same and neurodivergence doesn’t look or present one way! Masking is extremely tiring, but the daily coffee I buy on campus makes me feel calm and focused!

6. Connection and identity

• How does your neurodivergence connect you to others?

I often find myself gravitating to others who are neurodivergent (and now realise I have throughout my life). 

• What misconceptions do you wish people would let go of?

That neurodiversity looks one way or another, and that all neurodivergence is the same.

• What do you wish you had heard earlier in life about being neurodivergent?

Neurodiversity can vary and that you do not have to put a label on it!

7. Looking forward

• What hopes do you have for future generations of neurodivergent people?

That people do not need to mask as much as I have throughout my life, just to feel like they fit into the workplace.

That more individuals are aware of (and feel able to request) reasonable adjustments during recruitment processes – and then within the workplace. As well as employers ensuring that their recruitment practices are as inclusive as possible.

• What would a truly neuroinclusive world look and feel like for you?

That colleagues who are neurodivergent feel able to disclose this, without feeling judged. People not assuming that everyone’s lived experience is the same. Finally, leaders who truly embed neuro-inclusion into workplace culture. 

• If you could speak directly to someone just discovering their neurodivergence, what would you say?

If you feel comfortable to, let your line manager, peers and any line reports know about the journey you are going on. Try to find others who have also gone through this journey to support you, such as those in the Neurodiversity Staff Support Forum (or even a mentor to support you in the workplace!).