ADHD and me
Revd Dr Ayla Lepine, Associate Rector, St James’s Piccadilly, reflects on her recent diagnosis of ADHD
When Revd John Beauchamp invited me to offer a personal reflection about my experience with ADHD, my immediate thought was ‘Yes!’
I say yes to things a lot, often without thinking it through a great deal. That’s part of my impulsivity, which is a characteristic of ADHD. There are some useful advantages to this: I enjoy engaging with exciting projects, helping people and supporting them when invited to do so in a variety of ways, making new connections, and participating in things (sometimes too many things) that are in one way or another useful, joyful, productive, prayerful, missional, or some combination of these.
My next response, internally, to John’s invitation was ‘I don’t have anything of value to say.’ That’s anxious perfectionism, which is another characteristic of ADHD. It took me a while to talk myself around from this viewpoint, as I tried to convince myself, ‘If he didn’t think I had anything of value to say, he wouldn’t have asked me to write this’. Eventually, sufficiently reassured, maybe, just about, I did say yes. That was weeks ago, and the same afternoon, I had tons of ideas about how to craft this reflection – what to say, what not to say, what resources I might include, how I might tell the story so far about my experience of neurodiversity, disability, and my recent assessment for ADHD – and then life took over, and I forgot to write all my ideas down, and by the following week, this task became a glaring item on my to-do list.
I have a colour-coded to-do list that I print out once a week, and a paper diary, because I find task lists on my phone and the Outlook calendar impossible to use – too much information in a tiny space, and organised in what feels to me like a bewildering way. That experience of these aspects of technology – which so many people find really useful and productive – is, also, yes, a characteristic of ADHD. I procrastinated – a lot – about writing this reflection. For weeks, it sat, unmoving, on my to-do list, highlighted in pink (pink means ‘must do this week’. That didn’t happen.) It won’t surprise you to know that procrastination, to the point of debilitating worry and overwhelming feelings of guilt, is also a characteristic of ADHD.
I first wondered about whether I might have ADHD a few years ago, when I talked with my older brother. He and my niece and nephew were all diagnosed, and they are all very different people with different ways of expressing this condition (I, like ADHD expert Tracy Otsuka and many others, prefer the word ‘condition’ to ‘disorder’. ADHD brains are not ‘disordered’. They’re just different. And often very creative and full of good ideas). I met a few more people with ADHD – friends and colleagues in academia, the arts, and the Church, and I became more curious. But I didn’t imagine myself really having it because I didn’t have many of what I thought were the ‘classic’ characteristics. I sat still and was well-behaved in class, I have a long attention span and can concentrate on things easily, I don’t lose things often, and I’ve seen many things through to completion including a PhD.
In April I visited my brother and his family, and we talked about it more, five years on from his original diagnosis. He suggested that I fill in a preliminary assessment questionnaire, just to check whether I might have some of the symptoms. I did. Lots of them. And I also started to think about some of the things I had experienced over the years in a slightly different way. I was well-behaved in class, but in my head I was (and still am) thinking of 20 things at once, and constantly fidgeting with my hands. I can concentrate on things easily when I care deeply about them, and have an attention span that can go very deeply, and for hours, to the extent that I completely lose track of time – this is a classic characteristic of ADHD, which is called hyperfocus. I don’t lose things often, but that’s because if I don’t keep everything in exactly the same place, as often as humanly possible, I do lose things. Sometimes incredibly important things, like my passport and UK biometric ID card, which I lost, on the same day, in summer 2022, during a stressful time. I see many things through, big and small, but the effort it takes to maintain concentration when the going gets tough is, apparently, absolutely huge, and way tougher for me to maintain than neurotypical people.
I decided to learn as much as I could about ADHD when I got back from my trip to Canada (remember hyperfocus? I did that. A lot.) and I spoke to my GP about it. He agreed that I definitely had many of the characteristics. He also explained that the waiting list for diagnosing ADHD in adults is years long, and suggested that, if I could afford it, a private assessment might be better. I thought about it carefully. What difference would it make if I knew I did or didn’t have ADHD? Beyond curiosity, the main thing I wanted to access was relevant resources. I don’t really have an opinion yet about medication. It works for some, and not for others, and there’s a UK-wide shortage anyway, so it’s moot for now really.
If a diagnosis demonstrated that I do have ADHD, then I could learn about a huge variety of techniques, support, and communities. If I didn’t, I could explore other avenues to improve and attend to some of the things I’d noticed about myself. I also knew that many women experience aspects of ADHD and either ignore them or choose not to go forward for diagnosis because they don’t feel worthy of support, or wonder if they’re just imagining things, or decide that a life of exhausting perfectionism in a neurotypical world is just what they have to endure. That’s patriarchy and sexism at work in our society, which is a deep and persistent toxin in our social systems, and my decision to seek an assessment was an act of feminist defiance, regardless of the outcome.
As it turns out, I most definitely have ADHD. 8 out of 9 of the major diagnostic characteristics, apparently. The referral I had was for a specialist clinic and the diagnostic process was excellent. It was thorough, clear, transparent, and kind. I wouldn’t have been able to afford it without financial help from the Church. When I explained the situation to the Archdeacon of Charing Cross, he understood immediately and generously gave me the financial help I needed. The Clergy Support Trust can be very helpful with grants as well, depending on the circumstances. The assessment in early September – I have only known that I have ADHD for a matter of weeks – opened up a world of possibilities. Within days of my diagnosis I told my congregation at St James’s Piccadilly in the Sunday notices. I want, from the front, as a member of the clergy team in my parish, to be clear about the importance of inclusion and belonging for disabled people, whether their disabilities are visible or invisible. A member of the congregation who also has ADHD sent me a great email, and said this: ‘Best advice I ever got was don’t pretend you don’t have ADHD, i.e., the point of managing ADHD isn’t to learn how to behave neurotypically. If you need weird hacks to get through the day then embrace them all.’ The same person also told me that they were absolutely not surprised when I received my diagnosis.
I told people on social media too (all c.10 000 of them, which felt a bit scary). I received a huge amount of support and tons of great ideas, and learned a lot about friends and colleagues who also have ADHD. Suddenly a new type of community formed around me. There is so much support available, but also such a long way to go, and barriers to belonging and discrimination of many kinds continue on a daily basis in so many areas of life. I am determined to be an advocate for positive change. I’m also grateful for work being done by John Beauchamp, Fiona MacMillan and many more in the Diocese of London and beyond, and for the wisdom available about neurodiversity and disability. As these initial weeks and months continue, and I learn as much as I can, these are the resources and perspectives I’ve particularly appreciated. They might be helpful for you too. And if anyone wants to get in touch with me, you would be welcome to do so: email@example.com
Tracy Otsuka’s podcast
Jessica McCabe’s YouTube channel
Gabor Mate’s book Scattered Minds
Shaparak Khorsandi’s book Scatterbrain
Research and ideas by Robert Chapman and Micha Frazer-Carroll
Jason Wilson’s article about being diagnosed with ADHD in his 40s – A new life: being diagnosed with ADHD in my 40s has given me something quite magical | Jason Wilson | The Guardian