I was diagnosed with ADHD aged 35 – the biggest hurdle was convincing everyone it’s real

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When I started taking ADHD medication, I lost the constant mental chatter in my head. The silence terrified me …

Kate Lister

I don’t remember exactly how old I was when I first realised that I was stupid, but I can’t have been more than eight. It wasn’t a blinding light on the road to Damascus moment, rather a slow dawning of an irrefutable, ugly truth. I am stupid. I don’t remember where I was, or what had happened to finally force me to accept it, but I do remember feeling desperately sad. I remember too the sensation of a tight knot in the pit of my stomach whenever I thought about it.

The teachers didn’t say I was stupid, they said I didn’t try hard enough, but I knew they were wrong. I was trying and still couldn’t do what they wanted. Every school report I ever had said I could do better if only I tried. I was often in trouble for making mistakes in my work, daydreaming, and for forgetting important things – like P.E. kits, permission slips, homework, etc. I was a hopeless speller, worse at maths, easily distracted, and a terrible chatterbox.

Teachers became frustrated with me because they were sure I wasn’t stupid and couldn’t understand why I was behaving so badly. But I didn’t understand either. There were moments when I felt smarter than my behaviour suggested too. I loved reading, for example. I devoured books, history books especially. When I was nine, I’d go to the local library after school for hours at a time, but often forgot to tell my parents where I was and caused them no end of worry.

But a love of books didn’t undo the fact that I was always doing really stupid things. I could never get organised, regularly failed to finish work, and struggled to recall simple instructions the teachers gave me. I was very messy and forever losing things. They said I wasn’t trying, but I knew the truth. This was as good as I could do and it wasn’t good enough, therefore, I concluded, I must be stupid. But I had also realised that I could fool people, and so I carefully set about hiding my stupidity.

My tactic was quite simple. By secondary school, I had become the badly behaved student who wasn’t working hard enough. There were subjects I really loved, like English, art, and history, where I was prepared to work twice as hard as everyone else for pretty average grades and then pretend that I didn’t care about it. But subjects like maths, science, and geography were akin to mental torture. It didn’t matter how hard I tried, they just wouldn’t go in. One science teacher became so frustrated with me, every week he made me stand up in front of the class and proceeded to quiz me on the lesson. I never gave the right answer and the shame of it still burns me now.

I took English, art, and history for A-Levels and fought my way to university with a clutch of Cs to study literature, and it was there that the first of my learning difficulties was diagnosed: dyslexia. I was so convinced of my own stupidity that even when I got the results of the screening, I didn’t really believe it. But once I had learned how to work with dyslexia, instead of hiding it, things became much easier.

The relief at finally knowing why school had been such a struggle was immense. I was still chronically disorganised, messy, and forgetful, but this was all chalked up to the dyslexia, and people became much more forgiving of my fuck-ups. With the right support in place and a subject I was really interested in, I went on to do an MA and PhD.

Around the same time as I was diagnosed with dyslexia, my sister had started to struggle at school. She was disorganised, messy, forgetful, impulsive, and had started experimenting with drink and drugs. Recognising the symptoms, I suggested she should be screened for dyslexia, which she duly was. She did not have dyslexia. It would take another 10 years, punctuated with severe depression, addiction, and homelessness for my sister to be diagnosed correctly; it was attention deficit hyperactivity disorder (ADHD).

With the right therapy and medication, my sister’s life was completely transformed.

Until my sister was diagnosed with it, I knew next to nothing about ADHD. I didn’t even know adults could have ADHD, but they can, and as it turned out, I was one of them. I was formally diagnosed with adult ADHD at the age of 35 and the last piece of the puzzle fell into place.

A diagnosis of ADHD seemed to provoke wry smiles, eye-rolling, a lot of opinions on yoga, “big pharma” and “fish oils

Kate LIster

Initially, I laughed at the suggestion I could have ADHD. But the more my sister talked to me about it, the more of the condition I saw in myself. The forgetfulness, the not listening, and the chronic disorganisation all rang true and eventually I asked my GP for a referral. The assessment process itself is an intense one.

A psychiatrist spent several sessions digging around in my personal history and dusting off various traumas to see if there was any pattern there. They also spoke to my family and a nominated friend, and asked to see all my old school reports. The whole process took about a month.

But whereas a diagnosis of dyslexia elicited compassion and understanding from those I disclosed it to, a diagnosis of ADHD seemed to provoke wry smiles, eye-rolling, a lot of opinions on yoga, “big pharma”, “fish oils”, and statements that started with “well, in my day”. I wanted to scream my diagnosis from the rooftop and staple it to the forehead of my former science teacher, but I suddenly found myself confronting a mass of misinformation and stigma.

The biggest hurdle was convincing people ADHD is real, and not something made up to excuse naughty children, or flog unnecessary medication to Americans.

I cannot recall anyone ever suggesting dyslexia was made up, but I hear this about ADHD all the time.

Kate LIster

ADHD is thought to be caused by low levels of a neurotransmitter called norepinephrine. Scientists have also observed that an ADHD brain does not have the same levels of dopamine as a neurotypical brain.

Dr Tony Lloyd is a child and adolescent psychotherapist, and the CEO of the UK ADHD Foundation. He has spent a career working with people like me. “ADHD presents in three fundamental ways,” he explained. “There is hyperactivity, impulsivity, and inattentiveness. This may sound simplistic, but it is much more complex than that. Inattentiveness means more poor working memory, which means poor long term memory. Impulsivity is not just impulsive actions, it means impulsive thoughts and emotions. Not everyone presents as hyperactive either, especially girls.”

Explaining the science of ADHD is considerably easier than describing what it is like to live with it, which brings me to another common misconception. Despite the name, attention is not something an ADHD brain is deficient in. What the brain struggles to do is to regulate attention. Whereas a neurotypical brain can filter out and then prioritise various stimuli, the ADHD brain can’t, which means it will try and focus on everything equally, or it will focus attention on the wrong thing. It is like an orchestra playing without a conductor.

For many like me, this includes not only giving attention to everything happening around them, but also to their thoughts, which race through the brain completely unsupervised. Every thought that flicks across my brain gets top billing, and because my brain can’t prioritise or filter these thoughts, they come in droves.

Dr Stephen Campbell is the dyslexia and disability co-ordinator at Leeds Trinity University, and is responsible for identifying and supplying the support students with ADHD require throughout their degrees. He told me: “In adults, ADHD is less easy to identify, and the symptoms less easy to spot given the significant differences in social circumstances. It’s thought that hyperactivity decreases in adulthood, but inattentiveness may worsen. So an adult may not run around and climb on top of things like a child would, but most likely would be prone to restlessness, boredom and always be on the move for more interesting things to do.”

It is this mental hyperactivity that can make people with ADHD so forgetful, inattentive, and disorganised. To return to the orchestra analogy, imagine a brass band following you about, playing loudly, and then trying to get some work done. You would forget things, not listen, and make mistakes too. It also means we get bored and frustrated easily, we don’t think things through properly, and can be very impulsive. The poor brain is so overwhelmed that energy courses through the body causing restlessness, fidgeting, finger drumming, and leg shaking.

I asked Dr Lloyd about the constant fidgeting and he explained that one of the ways the brain can focus is through the production of dopamine, and exercise and movement produce dopamine. “That’s why so many athletes, so many actors, and so many people in performing arts have ADHD. People with ADHD tend to find ways to regulate dopamine in their brains.”

One of the most bizarre things to happen was finding myself bored by people I had previously enjoyed talking to.

Kate Lister

One of the most unsettling parts of getting the diagnosis is learning that other people experience the world very differently to the way I do. Realising that not everyone has the constant racing thoughts was quite a revelation – as was learning that people can be bored in a meeting, but still listen to what is being said.

I had no idea how ‘noisy’ my brain was until I started taking ADHD medication, and to begin with, the silence absolutely terrified me. Without the constant mental chatter, days seemed to drag on for weeks, I felt lonely, and suddenly noticed unpleasant things around me – like how dirty my flat was.

One of the most bizarre things to happen was finding myself bored by people I had previously enjoyed talking to. I mentioned this to my doctor at the Leeds Adult ADHD Service. She laughed and explained that it was because I was actually listening to what they were saying, instead of allowing the ADHD chatter to distract me.

I am very lucky to live in a city with an NHS ADHD service. In 2019, the ADHD Foundation published an audit of ADHD services for adults in England and found there is “a worrying lack of understanding and gaps in provision for adults”. Despite an estimated 1.5 million adults living with ADHD in the UK, there are only a handful of dedicated ADHD centres.

If you don’t live close to one of these centres, you must try to access assessment and medication through your GP, which the audit concluded was “a postcode lottery”.

In some areas, there are no services available at all. Ten per cent of Clinical Commissioning Groups in England stated that they “implement some form of cap on adult ADHD services”, whilst nine commissioning groups don’t offer any adult ADHD services. When my sister moved last year, her GP couldn’t prescribe her usual ADHD medication because they must be issued by a specialist and there was no funding available for one.

Getting the diagnosis has allowed me to get the right support at work and to make peace with a part of myself I spent years trying to hide.

Being diagnosed with ADHD has transformed my life. I have been able to finally tell my eight-year-old self that she is not stupid.

Kate Lister

The damage ADHD causes does not come from the condition itself, which can be managed, but from a lack of proper treatment and diagnosis. Left untreated, ADHD can destroy lives.

Research has shown that those with ADHD have an increased risk for addiction disorders like alcoholism and substance abuse. It has been estimated that up to 50 per cent of adolescents and adults with substance abuse disorders have ADHD. Research published in the BMC Psychiatry Journal in 2011 estimated that 24 per cent of the UK male prison population was diagnosed with ADHD in childhood.

Dr Lloyd explained that a child with ADHD will often be exposed to stressful situations, where the brain is constantly flooded with cortisol and adrenaline. “In childhood, there is a great deal more plasticity and neurogenesis in the brain. In puberty, your brain makes an assessment of which parts of brains it needs to develop to prepare for adulthood based on its adaptive response to its environment so far.” In effect, the brain learns how to be stressed, the result of which is a propensity to depression and anxiety in adulthood.

Speaking for myself, the damage caused by undiagnosed ADHD has been considerable, but I wouldn’t give it back. There are a whole host of positives that come with it – as long as you know what you are dealing with. Our noisy brains mean we can be very creative. ADHDers often excel in a crisis, because we have spent a lifetime dealing with complete chaos.

Our noisy brains mean we can be very creative. ADHDers often excel in a crisis, because we have spent a lifetime dealing with complete chaos.

Kate Lister

With the right support, our impulsiveness makes us brave, rather than reckless. We are fast thinkers, innovative, and passionate. Yes, we can be messy, forgetful, and probably weren’t listening to what you were saying, but we are rarely boring. But for people with ADHD to be able to shine, access to the proper services and support are essential. No child should have to grow up believing they are a failure when the truth is that they have a fantastic brain.

Dr Kate Lister is a university lecturer, a writer, blogger, and curates the online research project Whores of Yore. For more information on ADHD and support available, visit the ADHD Foundation.

Reprint of article from:
https://inews.co.uk/opinion/adhd-diagnosis-adults-symptoms-treatment-dyslexia-498900