On Being Diagnosed with ADHD Aged 38
A couple of years ago, I wrote a blog for Inclusive Church about being an introvert. When I look back at it now, I realise that some of the things I described are likely not just to do with being introvert, but to do with my very recently diagnosed ADHD. More on that later. ADHD is short for Attention Deficit Hyperactivity Disorder – the word ‘disorder’ is an unhelpfully negative medical term tagged onto many conditions which make people different. Actually, both disorder and deficit are negative words which attach stigma to the condition of ADHD. It is true that people with ADHD struggle with attention and focus, but that’s because we focus in a different way to the norm, and society is set up for the norm. As with other disabilities, it is often society which disables more than the condition itself. ADHD is a type of neurodivergence, along with Autism, Dyspraxia, Tourette’s, Dyslexia etc. In short, it turns out that I have a different brain to neuro-typical people.
When the psychiatrist diagnosed me in her clinic, I cried. I cried for all the times I had been told I didn’t listen, didn’t concentrate, and interrupted too much. I cried for all the internalised feelings of low self-worth and all the self-criticism which came from having a brain which doesn’t always work well with the way society is set up. I cried for the exhaustion I carry every day, because I have to concentrate 10 times harder on what people are saying, write everything down or it’ll evaporate from my memory immediately, and police myself all the time in conversations, because I might be talking too fast, saying things I shouldn’t without thinking, or interrupting someone without meaning to. Although I have overcome much of the disabling which society does to people who are different, the psychiatrist told me that I would have to come to terms not only with my new diagnosis and understanding of myself, but with the trauma of a whole life lived with an unrecognised disability, which neither I nor the people around me knew I had.
ADHD, like so many conditions, is misunderstood by many. I’ve recently been struggling to look after my toddler because of the feeling of overwhelm – caused by too many different stimuli at once – which was making me meltdown. The meltdowns mostly involve sitting down and crying uncontrollably when everything gets too much (overwhelm and also emotional disregulation are both symptoms of ADHD which I have). Sensory overwhelm is common in ADHD, so I googled ‘parenting with ADHD’ for some help, and all that came up was advice for parents of children with ADHD. Not helpful. The world generally thinks that ADHD is something which only children have and which they can and do ‘grow out of’. I asked my psychiatrist about this belief, because for me the opposite is true – I have noticed my ADHD symptoms getting more pronounced the older I’ve become. She said that some doctors and psychiatrists believe it’s possible for ‘outgrowing’ to happen, but it’s also possible that some of the children who have ‘outgrown’ ADHD were either misdiagnosed in the first place (some children are misdiagnosed with ADHD – especially children in care, whose reactions to trauma can sometimes present in similar ways to aspects of ADHD) or have a mild form of ADHD which, as an adult, the person has just adapted to – to the point that it doesn’t affect them anymore. She also told me that my ADHD has seemed more obvious to me as I’ve gone through adulthood, because as a child I had more structure and support in a school system, and when that was taken away, I felt like I was floundering in the dark, with only my own (lack of) self-motivation and focus to keep me going. I can attest that she is right: I really struggled at university and probably could have got a better result than I did.
When I told my parents about my new diagnosis, my mum said that I didn’t seem at all like the children she taught who had ADHD (Mum was a teacher for many years). This is understandable, and it’s likely to be her and many other people’s conclusion for several reasons. Firstly, she’s probably never met anyone with ADHD who is not a child – ADHD in adults looks quite different but is diagnosed less (although this is slowly changing). Secondly, ADHD was considered to be a behavioural problem for a very long time (until the 1980s), and therefore it is associated with badly behaved boys, not 38-year-old women with careers. Thirdly, the association of ADHD with badly behaved boys was mainly because of the H in ADHD. I do not actually have this – my diagnosis is what used to be called ‘ADD’ and is now called ADHD: inattentive type (rather than hyperactive type or combined). I do not have the one thing many people in the general population associate with ADHD – hyperactivity – so many people will struggle to believe that I have it.
I don’t have much of the hyperactivity part, but I do have a lot of other symptoms, and I would say that, although I do not appear hyperative to the outside world, my brain is thoroughly hyperactive. This is both a gift and a struggle – I can link things up very quickly and have new ideas which others might not have had, but I can also lose focus very quickly, as my brain has moved on, and that can be frustrating. ADHD is about more than being ‘forgetful’ or ‘unfocused’ though. For example, in my blog about being an introvert, I talk about how I strongly dislike the noise (and smells) of everyday life, especially in a big city like London. I’m fortunate that, although I live in Birmingham, I live in a fairly quiet area in the south of the city, not in the centre. Being introvert might be part of the reason I often find too many people, noise and smells overwhelming, but it is likely also part of my ADHD. It is very common in ADHD to have sensory sensitivity and to be overwhelmed by this sensitivity. This condition even has a name – Sensory Processing Disorder (SPD). According to ADDitude (an online ADHD magazine), around 80% of people with ADHD also have comorbidities, two common ones being anxiety and SPD.
The meltdowns I wrote about above, in relation to my young 2-year-old son, have recently become much more common. That is because I have a comorbidity of anxiety, which has been brought on by 2020 and its stresses, as well as by the changes in my son, who has become a loud, easily bored, rebellious toddler rather than a needy but simple baby. Basically, he is developing perfectly for his age – his changes are completely normal and necessary, and he is also hilarious, loving and endlessly fascinating with it! My meltdowns are no more his fault than they are my fault, but it’s good for me to know where they come from, to recognise when they are happening, and then to ask for help.
My wife has been brilliantly supportive throughout this year, despite her own mental health struggles. Sometimes we have to tag team, because we are both struggling at the same time. One day, one of us is doing a bit better and so takes over. The next day, we swap round. In Charlie Mackesy’s beautiful book ‘The boy, the mole, the fox and the horse’, it says ‘Asking for help isn’t giving up… It’s refusing to give up’. I think that’s the gift we disabled people give to the world: despite the difficulties and struggles of living in a world which is not made for us and in which things are 10 times harder for us, we never give up and we know when to ask for help (as well as helping others when needed). These are two important lessons which would benefit all people in society. We all need one another, and we all bring unique gifts to the table. Every one of us is valuable, and none of us is ‘wrong’ or ‘disordered’, despite all our labels.
Ruth Wilde is the National Coordinator for Inclusive Church