Not working from a blank page

This ADHD Awareness Month, Paul Kilburn talks about his experiences of getting a diagnosis later in life.

In 2022, about a year after I joined Certitude, I was in a group conversation with my colleague Helen where she was talking about her own late ADHD diagnosis. While she wasn’t talking specifically to me it rang true. Amongst other things, she talked about difficulties of working from a blank page and keeping to self-imposed deadlines, both things I immediately recognised.

This was also shortly after my parents to clearing out their garage and loft and sharing copies of my old school records. They were quite difficult to read, aside from a very positive History teacher. Things had been difficult at a school with high expectations. I reached out to Helen, and we talked it through. As co-chair of the Accessibility network and from her own experiences, she was able to signpost me to places where I could find out more and potentially explore my own diagnosis. I did go for this and received my diagnosis in October 2022.

I read my school reports again after my ADHD diagnosis, during an unsuccessful decluttering campaign. It was then even harder to read because you can see a clear pattern that nobody is picking up on. The blame was always with me, “try harder” “pull your socks up” “could achieve more with effort”, because teachers didn’t necessarily have the knowledge, experience or time to understand the issues. There just wasn't the awareness at that time.

There can be a feeling of grief following a late diagnosis, reflecting on lost time and lost opportunities and thinking of all the people who missed what was happening. You’re trying to realign your memory as well and your experiences with this new perspective. Also, when you're getting a diagnosis later in your life, you're already thinking about time lost. That mid-life crisis thinking about how your path could have been different. For me there was also relief to go with this, I hoped that by getting a diagnosis it would give my challenges a name and curate some strategies too about what could help.

I’ve been doing this kind of work for over 20 years, and I’ve never thought of any kind of diagnosis as a label – I mean a diagnosis for diabetes is not a label, it’s way of people understanding what’s happening with their body and to find ways to manage it. But because an ADHD diagnosis is about our brains rather than our bodies, people have seen it differently. It can be a complex conversation to have with people.

For my wife, it was an easier conversation because she was there with me for the journey, she understood. I built up telling my parents as a big thing though knew they would be very supportive. Dad told me later that they had conversations trying to work through it because the diagnosis put a different perspective on their memory of me at school. For my sister it was quicker, she went off and did some reading and said ‘yeah, that seems right, I recognise a lot of that’. It was more straightforward for her to understand. I was immediately very open about it with friends and colleagues too. The sector we work in means that most people have some experience and understanding, so I didn't find it that difficult to tell people.

When I got the diagnosis, we didn’t yet have a reasonable adjustments policy at Certitude. That’s not to say that people didn’t understand them, but our procedures weren’t obvious and that brought frustration. As a manager I think I'm very good at giving people what they need, but maybe less able to ask for support that I need for myself. When I got my recommendations from Access to Work, having sought this independently, it wasn't entirely clear who I should share those with or what the expectations were. Progress was slow in getting things in place and unfortunately Access to Work has an expectation that everything should be in place within 13 weeks for you to claim the funding back for the organisation.

Once the right people were engaged, thank you to our IT, L&OD and Facilities teams, we were able to put things in place. A clear process and an understanding of the importance of adjustments is vital and happened through conversations with colleagues in those departments. Thankfully we now have a new Diversity and Inclusion business partner who has since then worked to launch our Workplace Adjustments Policy this year which includes a clear process and recommendations from our AccessAbility Network. This will make any future planning and adjustments for people much clearer and more supportive.

I’ve had some intensive learning and development sessions around the impact of getting a diagnosis and coping strategies, also via Access to Work. These really helped as you’re trying to piece together what is down to your ADHD and what may also be related to something else such as trauma, there’s often a crossover with other things that have happened in your life. Often when people get a diagnosis aspects of ADHD can feel accentuated because you’re more aware them and how your brain is processing and responding. I also began to take medication prescribed for ADHD which is an adjustment too.

AI technology has been really helpful in my work. It can get me over that initial step of the blank page and automatically translate transcription into ordered and accessible notes (as opposed to a mountain of half-finished scattershot notepads). I'm still finding the strategies that work for me.

Being open about having ADHD helps me connect with other people with a diagnosis, to have those peer conversations about what works for them, what they or I have tried. Just because something has worked for one of us, it might not work for everyone. Understanding that my brain wants to be distracted lead to building new habits, like putting my phone in another room.

People with ADHD can often struggle just as much with their executive function/working memory so finding technology such as Amazon devices to help with reminders and structure of my day is helpful. Utilising good relationships to use for accountability when starting and completing tasks can help too, though not every time! Inconsistency, impulsiveness and struggles with focus and memory will always be there but understanding them and having a diagnosis that helps me find needles in the internet haystack of advice and strategies is incredibly helpful.

And it’s good, I feel, to keep on talking about these things to raise awareness for people. Some of the public coverage can be quite doubting about ADHD diagnosis, reminding me of when people first became more aware of autism diagnosis. That reaction can make people who have been diagnosed feel unsupported. It will help to carry on listening to people who have ADHD to understand it's going to present differently for different people.