Guest Blog Introduction by Ruth Williams

Jeff Gawthorpe has been a regular panellist on our ADHD and autism courses over the past four years.  He has inspired and helped numerous individuals, from people trying to understand why they find certain aspects of their lives to be so challenging, through to healthcare professionals seeking to learn more about ADHD and autism, enabling them to provide informed support and treatment to their clients. 

Five years ago, Jeff wrote an incredibly moving account of his life prior to receiving an ADHD diagnosis.  His story documents a multitude of struggles from childhood through to his mid-forties, which Jeff recognises were attributable to his undiagnosed and untreated ADHD.  Jeff’s story eloquently highlights the importance of eventually receiving the correct diagnosis, which was transformational, enabling him to access targeted ADHD treatment, resulting in significant improvements to his mental wellbeing, confidence, and overall quality of life.

Watch out for Part 2, which covers the next part of Jeff’s journey through his autism diagnosis.

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I’ve always identified with the character in the Janis Ian song from the 1970s: ‘At Seventeen’ – the girl lacking social graces, staying at home, while the popular kids partied and lived their lives to the full. If I’m honest with myself, I have felt like that character for as long as I can remember; that happiness is for other people, not for me. As a child I learned that I shouldn’t expect happiness and I don’t deserve it. This wasn’t because of my upbringing, far from it. My parents have always been loving and supportive and I was lucky to have a stable family with great grandparents.

These ideas were learned away from home and family, as I struggled through the social landscape of childhood. It happened day by day, bit by bit, during primary and middle school. Admittedly I was always daydreaming but rather than being naughty I would be lost in my own world.

As a five-year-old I was quite the young philosopher and wasn’t afraid to pose questions arising from my daydreams. Unfortunately, Mrs Clarke didn’t think “How do dogs get married?” was quite so profound, the class didn’t either. However, like the class at the time I can see the funny side now!

Gradually I developed a sense of inferiority, that I was somehow less deserving than other kids. I didn’t know why at the time, not really. I had a vague awareness that others were more ‘with it’ than me, they didn’t daydream so much or didn’t fidget as much, and they found making friends much easier. But at that tender age honest insight and self-reflection were beyond my means.

What I didn’t realise at the time was that I was naïve and easily hoodwinked, and therefore, a regular target of jokes and ridicule. I was socially awkward and the ability of others to say the right thing at the right time remained a mystery to me; I had no idea how to be popular like the other kids. Calling the teacher ‘mum’ by mistake was also a regular occurrence. Most importantly, I was extremely emotionally sensitive, and I still am to be honest. I took rejection and any perceived slight very badly, believing it was all my fault for being stupid, I’d internalise the shame, further reducing my self-esteem.

In middle school, on account of my daydreaming and apparent dopiness, my form teacher christened me ‘Gormless Gawthorpe’. Later, on account of my childhood chubbiness he added ‘Pillsbury Dough Boy’ too. Cue bullying and further descent down the social hierarchy.

It wasn’t all doom and gloom, and in many ways, I had a great childhood: a stable home life, holidays, I played lots of sport, had friends (just not loads of them) and my family were always wonderful. In summer I often went fishing with my dad and granddad which I absolutely loved, but I was hopeless! Unsurprisingly, I had zero patience and after 2 minutes fishing I’d get up for a wonder or start making a bow and arrow. I’d never catch as many fish as them, but at least I know why now! Brilliant as those times were, they didn’t compensate for the drip feed of internalised negativity and self-blame slowly chipping away at my confidence.

I’ve since learned my difficulties were all classic signs of ADHD. If only I had known then, what might I have achieved?

Eventually I started compensating for the daydreaming and concentration, and by the start of my GCSEs it became apparent to me and my teachers that I was actually very bright. I was known for stumping teachers with questions they’d never been asked before. On learning about photosynthesis in biology I remember asking why chlorophyll was green – wouldn’t black pigment absorb more energy? They weren’t able to answer that at the time, and due my inquisitiveness and apparent intelligence teachers predicted stellar results for my GCSEs. My study skills were appalling though, I couldn’t revise and turned up to exams with no preparation. In the end my grades were pretty good but didn’t match my potential. My ‘A’ levels followed a very similar pattern.

I did better at university, as I loved the subject (biochemistry), and didn’t have to spread my attention so wide. Although I could have done better academically, I got a decent education for which I’m very grateful. There were however a few hiccups at university.

The whole world changed in one day when I was twenty years old. While in a class at university I felt unwell and decided to go home. Leaving the building it hit me: a wave of fear, I felt exposed, afraid, overwhelmed with dread. I was dizzy and faint, and I truly thought I was dying, I was terrified. Luckily A&E, was just around the corner, I stumbled there like a character in a Hitchcock movie and must have looked petrified when I arrived. Tests were performed and it was quickly decided I’d had a panic attack and was discharged.

I tried to explain to the medics that I couldn’t leave, I wasn’t me anymore, I was changed, I mean completely changed. Everything felt unreal and cartoon-like, but the cartoon was taking place in a dark, alien and foreboding world, and I was the main character. I even felt unreal myself; my sense of self had simply disintegrated and it had done so within the space of the last hour. I soon decided that I was experiencing my life from the perspective of another person in another reality. There was no sign of the familiar ‘me’ I had known for the previous twenty years. There was also no sign of the world in which I had previously lived, everything had turned black and terrifying.

So peculiar did I feel, that I believed my experience was unique in human history – no one could ever have felt like this. In my mind it followed that no one would ever understand or be able to help, it was a very lonely and confusing place to be. Later I learned that these feelings were not unique to me, they had names – derealisation and depersonalisation, and they’re not uncommon in severe depression and anxiety, or after trauma. However, I found the experience so overwhelming and so uniquely unpleasant, that I still lack the vocabulary to properly articulate it.

That day in the hospital lasted much longer that it should have. I roamed the corridors for hours, trying to return to reality, because I needed this nightmare to end before I left. I could not leave alone as I thought the world would swallow me, and I couldn’t call my parents, because what could I say and what would they do? Such was my state of my mind, that I thought they’d immediately know I was an impostor. What would I do then? I was eventually spotted roaming around by doctors or nurses, who either phoned, or helped me phone, my parents (I can’t remember which). After that, I can’t remember much of what happened for several months. However, I do know that my internal experience of being in a nightmare stuck with me for months, as did my constant sense of horror and bewilderment.

For at least 6 months I couldn’t function at all. I was severely anxious and depressed but because I felt so bad, and so different, I was convinced I was physically ill. The GP must have dreaded me returning every few days suggesting a different malady to explain my distress. I was desperate to establish a physical cause for my problems as then I might be able to fix myself. If it was a problem with my mind, I honestly felt I would NEVER get better.

For the first few months I was so fragile I lived at my parents and slept in their room on a camp bed. I saw a psychiatrist at St James’s every week during that period, it was pointless. He lacked any empathy, showed no appreciation of my distress, or how changed I felt as a person. He prescribed lofepramine, the first of many unnecessary psychiatric drugs, which I didn’t take for the first 6 weeks as I was scared it would make me worse. Over the next two years I tried amitriptyline, imipramine and clomipramine; all were ineffective. It was a very dark time, I felt grief for the loss of the old ‘me’ and despair at the future. Worst of all, I felt with absolute certainty that I would never recover.

I have no idea how I got through that period, but gradually I got better. I hesitate to call it a recovery as it was so slow and imperceptible a regression to the mean would be a more accurate description. After a year I returned to university, though it was probably two years until I felt even near normal again. However, I don’t think I’ve ever fully recovered from that episode.

When I look back at how ill I was, it’s scandalous that I received so little help. I was dangerously unwell for a long time, but after the first couple of months I was left by the NHS to pretty much fend for myself. My mind was a total mess for the first year, and I had very little support, it’s really just pure luck that I didn’t end up dead, just another statistic.

That was over twenty years ago. Since then, I have had three major relapses, but none as bad as the first. More than once, I encountered very difficult times and unable to cope ended up in A & E in a bad state. I’ve been to GPs dozens of times both exhibiting and describing the core symptoms of ADHD: racing mind, inability to relax, fidgeting, feeling overwhelmed, terrible sleep quality, anxiety, and treatment resistant depression. Not only were my symptoms never properly investigated and assessed but I was inappropriately treated with anti-depressants and anxiolytics or hypnotics. Over a period of around twenty years, I was prescribed: amitriptyline, imipramine, clomipramine, fluvoxetine, paroxetine, fluoxetine, citalopram, duloxetine, sertraline, diazepam, zopiclone, lorazepam, temazepam, buspirone. Some of these I took for many years, none of them did me any good, although I can’t deny the sleeping tablets were temporarily effective.

Not once did any doctor suggest we look into why my treatments didn’t work, why I kept relapsing, or whether my diagnosis of depression and anxiety was even valid. I asked these questions myself but was always told the same things – ‘not everyone responds to the first anti-depressant’, ‘it can take time to get better’. A couple of years ago, after being depressed for three years following my divorce, I asked a doctor at my GPs surgery to refer me to a psychiatrist. Unbelievably, she wouldn’t do it, insisting instead I try yet ANOTHER antidepressant. No thanks. I left exasperated and resolved to return and see a more understanding doctor. I never did go back; I was totally disillusioned with the medical profession and gave up hoping my mind could ever be fixed.

If only if only my ADHD had been spotted during any of these visits going back twenty years. Just once.

One constant that has kept me sane is work. After flitting between jobs for a few years after university, I spotted a course for computer programming. I took to it quickly and enjoyed every minute, I’ve always loved maths, puzzles, and electronics, and with a few extra bits (and a lot of boring meetings!) that’s what programming and system engineering is, pretty much. I was extremely fortunate to find something I enjoy and that I have the ability to do, not least because some key ADHD traits like hyper-focus and a restless mind actually appear to help. I’ve been working in IT ever since. I’m currently a senior engineer at a large software company, designing and building critical systems that are used by thousands of people daily. However, it wasn’t and isn’t all plain sailing. Until I was treated for ADHD, I found many things at work (e.g., paperwork, writing documentation, meetings) very difficult and was constantly overwhelmed, anxious, stressed and had very poor sleep. These problems haven’t disappeared completely but are now much improved.

When I was finally diagnosed it came from a chance conversation at work, remarking on how forgetful I can be and how stressed I always looked, my colleague suggested I investigate ADHD. I had never heard of ADHD in adults, but intrigued I went straight to the NHS website, and within a minute of starting reading everything fell into place. It was an enormous revelation for me as I had every single symptom in abundance. I decided to go private for diagnosis as the waiting list for NHS assessments was around nine months long and I was desperate to change. Within two weeks I was diagnosed, and for the first time in my adult life I had genuine hope that I might conquer my demons.

I can’t stress how important diagnosis has been for me; I honestly thought I was destined for another forty years of quiet desperation, depression, and anxiety with the odd crisis thrown in for good measure. I had more or less given up on the possibility of getting better, especially after my divorce. I’d regularly wake up and think what a relief it would be not to have to do this anymore, why bother with life, it’s pointless and miserable. Can you imagine living like that? It’s grim, but sadly it is a reality for many, many people with mental health issues. 

Since then, I have been taking medication for ADHD and it has changed my life. My moods have stabilised, depression lifted, anxiety massively reduced, work is much easier and far less stressful, I’m more patient and far less frustrated at life in general, although I’m still thoroughly disorganised and lose keys and bank cards all the time! Crucially now I know I have ADHD, I am so much kinder to myself, so much more forgiving – this is a neurological condition, and there’s no point in blaming myself anymore.

The pain I have endured as both child and adult because of my undiagnosed and untreated ADHD is substantial: a hugely traumatic mental breakdown, twenty years of depression, visits to A & E in a state of crisis, distress, anxiety, frustration, worry. Broken relationships, divorce, missed opportunities and chronic low self-esteem. This alone is a tragedy, but across the population of the UK the hardship, suffering and unfulfilled potential of sufferers must be enormous. It pains me to think of the many thousands of people right now in the UK, who are not aware they have ADHD. Many will be suffering, and just like I used to, they’ll be asking themselves “What the hell is wrong with me? Why do I struggle so much? Why can’t I just cope with life like other people?”

Given the prevalence of ADHD and the ease with which it can usually be treated, our failure as a society to take it seriously is outrageous. It should be considered a national scandal and a health emergency. What damage has government’s lack of concern and investment lead to? How many futures have been spoiled, childhoods ruined, and opportunities missed? How many people are under educated, haven’t reached their potential or are unemployed? How many sufferers abuse alcohol or drugs, having no other way to calm their racing minds? How many are depressed, anxious, or in crisis after reaching breaking point? How many suicides could have been avoided? How many divorces could have been prevented, and broken families kept together? And what about those people that slip under the authorities’ radar – the underachievers, those disillusioned with life feeling chronically unhappy, frustrated, shy, lonely, and broke?

The truth is that life with ADHD can be hard, really hard. As a child it damaged my self-esteem, formed much of my self-image, and destroyed my confidence before it had chance to develop. Learned at such a young age these feelings are very difficult to change as one grows older, they have been for me at least. ADHD wasn’t much recognised 35 years ago when I was a kid, but still, I can’t help thinking if only.

As an adult I have found ADHD even more difficult to live with. Until diagnosis I struggled with so many of the responsibilities of normal adult life, and I still do but to a much lesser extent in most instances. I’m referring to things like finances, maintaining a household, keeping track of bills, planning (of anything), relationships and rebuilding confidence after they fail, remembering birthdays, keeping things tidy, losing bank cards and documents. Keys in particular are a massive problem for me, I lose them multiple times a day, sometimes for good, and that can be costly as car keys are not cheap. On one occasion they turned up in the fridge at work after disappearing for a week, on another I once lost them on the first day of a new job, making me an hour late. I’ve even lost my brother in laws keys, after taking his keys home with me I didn’t realise for a month. Doh!

Missing or messing up these mundane, routine tasks seems benign enough at first glance – but cumulatively, when they happen all the time, day after day the effects really add up. I have no intuition for the passage of time for any period longer than a day or two; anything more than that and it all feels the same to me. Worst of all, because I forget conversations or don’t listen properly it can appear that I don’t care. Before we got divorced my wife thought this of me, and nothing could have been further from the truth. It hurts to think those that you really care about can receive exactly the opposite impression. It’s very difficult to hear, and it’s no surprise we are twice as likely to be divorced and have more mental health problems than those without ADHD. What is surprising though, is the prevalence of those mental health problems in the ADHD community. Eighty percent of people diagnosed with ADHD as an adult have at least one comorbid psychiatric condition. Eighty percent!

The human cost of undiagnosed ADHD is incalculable – the broken families, suicides, careers lost, unhappy lives and unmet potentials. This alone should be sufficient for society and our government to start treating ADHD with the priority it deserves. However, we all know government, particularly the current one, is more easily persuaded by economic arguments. Thankfully, the economic case for improving ADHD services is undeniable. The cost to society of undiagnosed ADHD is considerable, but diagnosis and treatment is relatively inexpensive. The right investment could help young people reach their potential, help people into work, and under employed people progress their careers. It would also enable earlier intervention and treatment by health professionals, reducing the harm that is often a consequence of untreated ADHD. In time this would reduce pressure and public spending on other services, particularly health, welfare and criminal justice. Although I’m no economist, increasing income tax receipts while reducing public spending sounds like a good combination to me.

After all that doom and gloom, I want to finish on a positive note, because ADHD is not all bad, not by a long shot. People that I know with ADHD are generally a very cheerful, friendly and optimistic. I am too, well most of the time, I do have periods when I feel down but now, I’m receiving treatment the good times far outweigh the bad. We’re helpful, sometimes too helpful, which can make me very busy at work, but saying no just isn’t in my nature. It has given me a very active mind which means I have an almost compulsive need for information. I’m therefore a voracious reader and I’m interested in practically anything, making me very good in quizzes! Overall, I think the biggest gift I have received from ADHD is my sense of humour, it’s rather inventive and some would say quite twisted, but I’m often told I’m very funny. I went on holiday with a group of friends last year and one family asked if they could rent me to keep them entertained on their next one. I’m constantly trying to make light of any situation, which appears to be quite a common trait. 

A colleague happened across the Rory Bremner ADHD documentary a few months ago. He collared me the next day, and was laughing while he said “I thought you were one of a kind, but I watched that Rory Bremner doc last night and I couldn’t believe it, he’s just like you!”.

I am autistic – very few people know that about me. I tend to keep it to myself for fear of what people will think. I’ve never necessarily felt different to those around me, however before my diagnosis, a small part of me knew I didn’t function the same way as others. I’ve grown up around people with autism which made it difficult to tell if my ‘quirks’ were learnt behaviours or not. When I was eight my dad was diagnosed with autism, when I was twelve my brother was diagnosed with autism, and when I was fifteen I was diagnosed with autism. I find certain textures very uncomfortable to deal with, I have an eye for detail in everything I do and am often not satisfied with the work I create, and I also love having a routine. These differences, to list a few, have followed me throughout my life, fluctuating through different challenges I’ve faced.

One of my biggest challenges is how my autism impacts my mental health. For as long as I can remember I have suffered from anxiety and depression, and this has recently been diagnosed as ‘chronic’ and will be with me for the rest of my life. I was once told by a psychiatrist that unfortunately ‘that comes with the territory’- apparently autism and depression are a package deal. Although this is sad and naturally difficult to face, I deal with these issues with medication and therapy. However, the other difficulties that stem from my autism can’t be dealt with in a simple way and have taken years of learning and understanding of myself to overcome.

However, before I could even begin the journey of managing my autism, I had to receive my diagnosis. Commonly, women are diagnosed with autism later in life, and this was the same for me. Due to something called ‘masking,’ when an individual changes the way they act as a form of camouflage and a way to fit in, women are able to cover up their real selves and fly under the diagnostic radar. It is often the case that left untreated, this mask slowly slips and only then are women noticed for their autism. This was my experience exactly. By the time I entered year eight of secondary school I was exhausted from hiding my real self. Day after day, my true identity was being revealed. However, my symptoms didn’t match those of my dad and brother and so no one thought that I could also be autistic. It wasn’t until my mum did some research and a psychologist suggested that I could be autistic did I start the process of getting a diagnosis.

School, especially high school, was one of the worst times for me. If I was to list all the things I hated about school it would be the length of this page. In Year eight my anxiety surrounding my studies got so bad that my attendance was down to just 30%, which led my mother to make the hard to decision to take me out of school. I then finished the school year and Year nine enrolled in an internet school. For me this was the best decision, I was able to focus on myself while also going to school and getting an education. Due to my schooling being online I was given the freedom to attend however I wanted, whether that be in my pyjamas, in bed or even at my grandma’s house, when my anxiety was extremely high this was very important for me and my future. I believe that mainstream school doesn’t work for everyone and that the child knows what is best for them. For me, I loved internet school but definitely missed the aspect of being around my friends. When I did go back to school in Year ten and eleven, I would often end up having a major meltdown towards the end of the year due to me having held it together, meaning my mum would end up taking me out of school again for the last month or so of the school year. These meltdowns were usually triggered by teachers not understanding my autism and the best ways to help me.

I rarely tell people I’m autistic as I don’t know how they’re going to react. A select few of my friends know and before telling them I’d work out if they were to be trusted or not. I’ve had some bad experiences of telling people I’m autistic, for example, in year ten I told my friendship group that I was having problems with school. They were understanding for less than a week and after that they started leaving me out completely, causing my self-esteem to fall. These experiences are some examples of many that have demonstrated the taboo that surrounds autism and has made me cautious of who to trust. Despite having built up these walls, I know now that I have people around me who love and support me.

Fortunately, I lived in a very understanding household. Growing up there was three of us diagnosed with autism, even though we all had different routines we manage to seamlessly blend and move around each other with only a few arguments here and there. Separately we all had our challenges, which we would find difficult to understand however it let us all grow as individuals and become more understanding.

I am autistic – very few people knew that about me. It’s taken time for me to accept my diagnosis but I’m ready to tell the world.

If there is anything you’ve read and related to or need a friend who has had similar experiences then don’t hesitate to contact me: @mayalouisaberry on Instagram and mayaberry@hotmail.co.uk

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