by Jill Dykes, submitted 3 September 2021
I’d known about Attention Deficit and Hyperactivity Disorder (ADHD) for a long time. At least I thought I did. I had a degree in psychology and remember the description of fidgety boys who couldn’t sit still in school and had trouble learning as a result. I remember the cognitive dissonance I experienced when my lecturer explained that children were treated with Ritalin, a type of amphetamine, like the illegal party drug. I didn’t relate at all to what I read and moved on to focus on other areas of clinical psychology that I could relate to more closely, such as anxiety and depression.
There were fleeting moments during my university years, and on into my early career, that I considered maybe having ADHD or dyslexia, as I found it incredibly difficult to get started on and complete lengthy pieces of written work, and invariably fell asleep within 5 minutes of any course reading. However, I had dismissed those notions because I could trundle out essays under exam conditions, consumed fiction novels voraciously, and was able to work at pace on other types of tasks. I was just lazy and a bit crap, I thought. My psychology lectures hadn’t covered the “interest, challenge, novelty and urgency” nature of the ADHD brain back in my student days.
Over the years I picked up the idea in popular psychology and the media that ADHD was over- diagnosed, and was an excuse for bad parenting, and poor behaviour. I internalised those views, already a fervent supporter of “nurture” versus “nature” in debates around how human behaviour patterns were formed and explained.
I carried those views into my journey as a parent. I was set on providing my children with love, acceptance, stability, and a nurturing environment so they would be protected from the mental health challenges I had experienced and that were fervent in my family. My beliefs were soon challenged.
Fast-forward to a few years later when it’s becoming clear that the rough and tumble, impulsive, hyperactive, defiant, and tantrum-like behaviour that my son displayed in nursery is not something he’s growing out of in school. The frequency and severity of phone calls and meetings with teachers about his behaviour intensify and soon we’re each voicing the concern that we had in the back of our minds that he may have ADHD.
Within a couple of months, he’s diagnosed. A conversation with his private child psychiatrist raises the issue of inheritability of ADHD, the “explosion in adult psychiatry” that was underway at that time, where researchers and clinicians were realising that undiagnosed ADHD was often at the root of anxiety, depression, bipolar disorder, sleep disorders, eating disorders, personality disorders and other mental health conditions – either misdiagnosed or as comorbidities. That conversation changed my life.
My fervent reading about ADHD on behalf of my son soon expanded into reading about the often very different presentation ADHD has in girls and women. I related so much to the experiences and symptoms that I read.
Being scatty, clumsy and forgetful. Being constantly late for things, procrastinating over difficult or boring tasks, not being able to get started on tasks until the last minute and doing them in a panicked, caffeine and sugar-fuelled late-night rush. I didn’t fidget or feel the need to shout out in lectures or meetings. I was a slow-moving procrastinator much of the time, then a flurry of enthused, energetic, and slightly erratic activity and output for a short period of time, then back to spaced-out plodding. I’d had sleeping problems all my life, first experienced anxiety attacks at the age of 8, and was first put on anti-depressants for issues with social anxiety and depression when I was 16.
At that time in my life, those difficulties had been increasing with the demands of 2 children, the stress of divorce, becoming a single parent, and returning to work full-time in a challenging job in academia. I was seeing my GP for insomnia, stress, and anxiety and was on SSRIs and beta blockers.
What clinched it for me, was reading about Rejection Sensitivity Dysphoria. Thought to be a symptom of several mental health conditions, but most strongly associated with ADHD, it was an experience I had been trying to describe to counsellors for years. Encountering some form of criticism or rejection
– even just in the form of a passing comment or a sharper tone of voice from a friend, colleague or family member – could instantly bring on a short depressive episode (more commonly presenting as explosive anger and even violence in men – women tend to turn in on themselves, where men externalise their pain).
Experienced first as a physical sensation where all the energy drains from your body, then the urge to retreat and curl up somewhere alone, safe and dark. With it comes intense and uncontrollable rumination over the perceived rejection, the sensation of reliving past rejections, and fleeting notions of suicidal ideation. Never wanting to actually end my life, but for short periods of time, seeing death or non-existence as the only escape from those recurring episodes of intense pain.
I’d learned years ago how to deal with those episodes. First and foremost, I’d learned that they pass. Always. Whatever despairing perspective I had on myself, on the world, and on my relationship with it – it always lifted and would be replaced by something much more balanced. That insight shortened the episodes and reduced the toll they took on my long-term self-esteem. I’d learned too that sleeping often gave my brain the reboot it needed to overcome these episodes.
I’d never taken those experiences to doctors as evidence of depression, because they passed quickly, and the DSM V only counts more extended episodes as evidence for a depression diagnosis. Now this experience had a name and a cause. I’d never felt so validated.
Armed with this knowledge, I asked my very supportive GP for a referral to my local adult ADHD service. No such service existed, contrary to UK clinical guidelines. The referral was to general adult psychiatry for assessment and the referral was denied by that service on the grounds that I, “wasn’t experiencing any difficulties at that time”. My GP explained that difficulties meant having trouble keeping a job or staying out of prison. This apparently is the threshold for adult ADHD assessment where I live.
Forced to pursue private assessment, I was soon diagnosed with ADHD by a psychiatrist who specialised in ADHD in women, and who was very experienced in working with women who had at least reasonable achievements in their education and career. She didn’t need me to be struggling to keep a job or stay out of jail to see that my brain had always worked differently.
Reluctant to continue paying for treatment, I tried again with my local NHS. This time my GPs referral was accepted, since a diagnosis accompanied it. However, I continued to meet poor knowledge and understanding of ADHD, even in those supposedly trained to spot and diagnose it. My private diagnosis was dismissed, the accompanying diagnostic questionnaires I’d completed for the private service and forwarded on were disregarded, and the dicky-bowed, portly, man I saw began to tell me that it was unlikely that I had ADHD at the beginning of my appointment due to my having a degree (2 degrees actually).
He proceeded to contradict every symptom of my ADHD that I described, determined that some other explanation was more suitable. He also told me that I had “medical student syndrome”, where I’d been reading so much about a condition that I imagined I had it. He took me off all my ADHD and anti-
depressant medication (no gradual withdrawal of the anti-depressants as per clinical guidelines) and discharged me.
The 2nd opinion I asked for went only moderately better. This psychiatrist at least took the time to investigate my childhood – looking for evidence of ADHD before the age of 12 as per the diagnostic criteria. My school reports show me to be a good, clever girl who excelled in school. The odd comment about me needing to pay more attention, taking so long to complete written work, or being overly chatty were disregarded.
A phone call with my mum included her descriptions of me being always on the go as a toddler, constantly doing acrobatics, climbing and being upside down as a child, and having lots of friendship difficulties throughout my school years. They talked about the prediction that I would to university made when I was 5 (I have an IQ assessed confirmed by Mensa as being in what used to be called the “gifted” range). Then, the slump in my academic performance as I hit my high school exam years and couldn’t focus on studying – procrastinating for hours in my room, doing my hair and nails instead of hitting the books, despite being a motivated and engaged student with an excellent track record.
Still no ADHD according to this doctor, after a 30-minute chat with me and the above process. To this day, I’m paying for private care and private prescriptions in a country (Scotland) that prides itself for free healthcare at point of delivery, and even free prescriptions. My experiences of local healthcare for assessment of ADHD are now the subject of a detailed complaint to my health board, currently under consideration.
There are moments when this journey makes me doubt my diagnosis – particularly the part where I was easily able to pay attention throughout primary school and the first couple of years of high school. ADHD impostor syndrome is definitely a “thing” amongst those of us who excelled through some or all of their education experience, and in particular for women, where their ADHD experiences were internal rather than being outwardly visible and noticed by others.
However, I know that my ADHD was always there. The ADHD brain is not about the inability to focus. It’s the inability to control your focus and give proper attention to things you find boring or unmotivating. I was interested in learning, stimulated by the school and university environment, and regularly rewarded with ticks, stars, high marks, and praise for engaging effectively.
The rejection sensitivity dysphoria experience was with me from the age of 4 and presented itself as utter terror of getting into trouble at school or any sort of negative feedback. On the rare occasions when it happened, I would freeze and become disproportionately upset. It drove me to become a people-pleaser in a futile attempt to avoid rejection, especially from figures of authority. It took until my 40s for me to start taking medication consistently that eradicated most of that experience, and for the first time, enabled me to become my authentic self in the workplace, and in my personal relationships.
My ADHD was behind my dad’s affectionate nickname for me, “the nutty professor”. Borne of my being very clever at school but hopeless, dreamy, slow, and clumsy with simple practical tasks at home. I walked into things and was prone to forgetting to bring my sister home with me after school or getting so distracted by playing on the way there that I often arrived late.
My parents will tell stories of how at age 3 I found my jigsaw puzzles too easy so started doing them upside down with no image showing to make them more challenging, and that I almost got to skip a year of primary school for being so advanced. They’ll also tell you about having to work out what I’d done with the butter and finding it up high, way on top of a wall cabinet where nothing ever goes, and
me being sent to the kitchen with an empty dinner plate, only to be found dreamily heading up to my bedroom with it on a regular basis.
And yet they still doubt my ADHD diagnosis.
Similarly, my ex-husband will tell stories of how he had to clear our car of over 20 empty diet coke cans – my form of self-medication with stimulants, and how it drove him crazy that I was (and continue to be) late for everything. He’ll tell you how I was prone to things like rushing to get on a train to attend a business meeting, leaving the house without my purse, only discovering this on the train when trying to buy a ticket, having to get off the train to head home again, calling to apologise for missing the meeting, only to find out the meeting isn’t for another week. He’ll tell you about the caffeine fuelled late night cleaning sprees I’d do on Sundays, on into 3am sometimes – having procrastinated about chores for ages and then suddenly finding the hyper-focus to get them done and not being able to stop.
He’ll complain about how frustrating it was to listen to me, my dad or my sister tell a story about anything because the stories were never linear. They never had a start a middle and an end. There would be endless unnecessary context setting, several incomprehensible tangents, overly detailed descriptions of conversations, side quests into comparable historical events, then maybe some sort of conclusion or punchline would be arrived at. Or sometimes one of us would just take over the conversation and send it down some other mind-boggling conversational maze.
He’ll also tell you I don’t have ADHD.
He’ll also tell you that our daughter doesn’t have ADHD because she doesn’t behave in the same way our son does. She is a beautiful, clever, strong-willed girl who clattered through her pre-school developmental milestones and her schoolwork at high speed. She is a force of nature. She’s anxious at times, but fierce, headstrong, and unstoppable – sometimes with less-than-ideal outcomes. Her school reports are generally glowing though. She’s bright, energetic, and competitive. She makes the stimulation and challenge of the school environment work for her. Her reports usually say something about her racing to finish her work too quickly without checking it over, and so she makes silly mistakes. She has a flair for drama and seems to have more volatile relationships with her peers than most other girls. She has lots to say for herself. Always.
My daughter has ADHD, but is undiagnosed and, until she hits some sort of mental health or academic wall, I can’t get her assessed. I have her back though. I’m determined that her journey with her ADHD will be different to mine and that her challenges won’t be lost and unsupported just because she has enough strengths to counter them well enough to fly below the radar at school, never living up to her full potential. The cost of compensating for ADHD can be high in terms of anxiety, depression, and low resilience to stress.
It makes me wonder about the other people in my family and how many of them have or had undiagnosed ADHD. Is ADHD behind my dad’s supposed bipolar disorder? He doesn’t have the condition-defining lengthy manic episodes but has lots of impulse control problems and his depressive episodes look mostly like RSD – triggered by negative social interactions. He shows signs of pathological demand avoidance, something that drove him to become an entrepreneur. He has now followed in his own father’s footsteps and become an alcoholic – demonstrating that vulnerability to addiction that comes with undiagnosed ADHD. He is extremely noise sensitive, something he used to become a piano tuner, technician and talented, self-taught musician. It also makes him jumpy and agitated when plates and glasses are clattered in a restaurant or he’s trying to participate in a conversation while there’s background noise.
I see it in my mum too. The fact that even at the age of 73, she still needs to be kept constantly physically busy, has never been able to spend time with us without washing, wiping, or hoovering something, that she has self-medicated with cigarettes and tea all my life, moving increasingly onto wine in the last few years. Like the rest of us, she’s noise sensitive. Her own version of that has resulted in countless fallouts with different neighbours in different homes.
She has been unable to learn to drive because she finds it too hard and panic-inducing to keep track of everything going on around about her. She, and almost all her (many) siblings have only ever had low-skilled, menial work – unable to learn or stick with one of the many skilled trades that were available to people of their generation in Glasgow during its ship-building and heavy industry years. She’s cripplingly socially anxious, doesn’t listen to people when they talk, butts in to finish their sentences for them, but gets the ending wrong because she went down some cognitive blind alley about what she thought they were saying. She holds onto grudges and awkward social interactions forever – ruminating over possible slights in how people have spoken to her. She’s hyper-sensitive to criticism, yet the least tactful person I know.
There are signs of possible ADHD in stories about other family members too. There are legendary tales of my late paternal uncle, being sent out as a boy to a local shop for a loaf of bread and ending up in a different town. On an impulse, he later signed up for several years’ service in the army as he was out of work and the longer commitment meant higher pay. He had to be bailed out of army prison by my grandmother for going AWOL after a few weeks of service (some of which was spent in Kenya and included being chased by a rhino!). His daughter, grandson, and great-grandson have all being diagnosed with ADHD.
One paternal aunt was notorious for being unaware of real and pressing events around her, having her head constantly stuck in a book. Irritated with her mental absence, my grandfather once chastised her and took her book off her when she was reading at the dinner table. So, starved of suitable cognitive stimulation, she read the fine print on the bottle of HP sauce instead (perceived as an act of defiance by my enraged grandfather). On one occasion, she absent-mindedly strolled home, leaving my infant father behind in his pram outside a shop. Later tales included her failing to notice the cockroaches floating in the pot that she had been tasked with minding and stirring.
My other paternal aunt died of an accidental overdose of prescription drugs on the banks of the local river in her 30s, leaving behind a 5-year-old daughter. My dad describes her as a “mover” and a “worker”, but “troubled”. She died not far from where my paternal grandfather was found dying from the effects of severe alcoholism from drinking methylated spirits – leaving behind a wife and 5 kids – my 6-year-old dad being one of them.
Was undiagnosed, untreated ADHD behind these stories? They hint at the classically known symptoms of hyperactivity, impulsivity and inattentiveness. They also speak to the emotional dysregulation, and susceptibility to addiction in the differently wired ADHD brain, with its associated deficits in serotonin and dopamine.
I have no doubt of my ADHD status, and I’m determined to do everything in my power to ensure that my children don’t fall foul of the pitfalls that can come when ADHD is not recognised, understood, supported or treated. I’m determined too to be an advocate for people with ADHD who are struggling to access assessment, diagnosis, treatment, support and due accommodations for their differences, and educator to those who teach, care for and employ them.
As much as my mind often dwells on these pitfalls and is constantly bumping into my own ADHD- flavoured challenges, I am grateful for my condition. The heightened sensitivity it brings is the source
of my highly intuitive and empathic nature. That fuels the compassion and pursuit of wider social purpose woven through most of my career in the public, 3rd and higher education sectors. I tap into that intuition and empathy as a parent, and step-parent, building on knowledge and skills I honed as a telephone counsellor on a national helpline for teenagers.
The same part of my brain that makes me overreact to criticism and rejection is the same part of my brain that allows me to be deeply moved by music, literature, and other media. It’s the same part of me that sends rushes down my spine and gives me goosebumps when singing a band’s song back to them at a concert, in unison with 30,000 other people. It is the source of my passion, sensuality and sexuality.
Rather than being an obstacle to learning, my ADHD makes my brain crave stimulation and input. When learning new things – especially those that interest me, my brain automatically looks to connect and ponder that new information with what I already know – enabling me to learn quickly, see links between ideas and concepts that others might not, whilst moving between the abstract and pragmatic.
Of course, it would be nice to sleep better, not arrive at meetings flustered and disorganised (or on the wrong day / week / venue entirely) and having to busk my contribution on the hoof, have significantly fewer impulses over my consumption of refined carbohydrates, and feel life’s interpersonal knocks a little less keenly. However, the highs and superpowers are definitely worth the lows and challenges.
It took 43 years and a battle for diagnosis, but now I have it and understand it, I finally like being me and don’t want to be anyone else.
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