We’ve Hit 10,000 Signatures for the ADHD Act Petition! Here’s What Comes Next…
A massive thank you to EVERYONE that has signed, shared and tirelessly pushed the Government petition so far:
You are all superstars! It’s a huge achievement, but only the start of our ADHD Action campaigning. This would not have happened without all of you getting behind this! We are now making noise and people who can make the changes we need will listen.
How the government might respond…
Now we’ve hit 10,000, the government have to give a formal response. This will be public and shines a huge spotlight. I don’t expect a response to be anything more than ‘we are looking into it and are committed to mental health’ etc., at this stage.
Don't be despondent if so. This is another ‘in’ and more feet through the door to speak to policy makers and politicians. It's a great leap forward!
MPs and commissioners have now also just received the brilliant ADHD impact report by the ADHD Foundation and other groups: ‘A Lifetime Lost, or a Lifetime Saved?
http://www.adhdaction.org/adhd-impact-report , so timing is perfect for us to hit 10,000.
Our other political lobbying, inch by inch:
The All Party Parliamentary Group for ADHD
We have enough cross-party MPs and a couple of peers on board to form our APPG. This is likely to be registered in early 2018. For starters, this will give us ambassadors within the House of Commons, and the use of the Parliamentary logo when we write to organisations on behalf of the group. More clout, in essence!
Meetings with more MPs, ministers and shadow ministers
Next batch of meetings down in Westminster on the 28th and 29th of November. MPs on board so far are being really helpful! Our aims include a Westminster Floor Debate on ADHD and questions from speakers weaved into other debates.
Meetings with civil servants across Departments of Health, Justice, Education, Home Office, Communities and Local Government, Work and Pensions, Cabinet Office and Defence
These are the departments we are actively booking meetings with and using our networks to influence change at national and regional level so far. There are lots of permanently employed policy makers that are just as important as the politicians to start to make the changes we need.
We’ve started the ball rolling with 4 local councils so far, to find out how they might be able to help us on a very local level, through their health and well-being teams, and also working with social services.
Clinical Commissioning Groups
Absolutely vital. These hold the purse strings in so many ways for better provision and diagnosis pathways for ADHD. I’ve got speaking slots at two events over the next four weeks with rooms packed full of commissioners. I’ll give it my all, then build on these to get face to face meetings. Gulp! No pressure...
We are planning to hold three round table events in early 2018. These will consist of around 20 invited guests including politicians, expert on ADHD, commissioners and people we need to influence. The first will be at the Scottish Parliament in February (Daniel Johnson MSP is now part of the ADHD Action team) followed by Westminster, then Stormont in Northern Ireland. (Haven't sorted Wales yet!)
We also plan to run further regional and issue specific events, e.g. Yorkshire, ADHD in the Armed Forces, ADHD’s portrayal in the media.
Team ADHD Action, we need you! Here’s what we do next…
It’s easy, we need one person in every constituency to write to their local MP with their story. We’ve provided a template, just follow these instructions: http://www.adhdaction.org/-everymp-campaign
The Big Push to 100,000
We’ve got until March. I’ll make no bones about it, this will be tough. But if every one of you that has signed gets just 10 others to do so too, we’ve smashed it. I’ll be providing template Facebook and LinkedIn messages to go out to your friends and family next week. Please email firstname.lastname@example.org any other ideas or suggestions to get us to the 100,000! I’m doing a press release early next week too, and want to run a Facebook ad campaign.
Are we up for this? Who wants to help push us to the #ADHD100K?
Donations, Fundraising and Membership
ADHD Action costs money to run. I really want to print some flyers and booklets to place in clinics and for people to give out fairly soon. We can do so much more with more! We plan to run volunteering projects with ADHD young people in partnership with local communities, create talking heads videos and explainer videos for learning and training, advertising campaigns, setting up our recruitment division and HR consultancy, offer services and support, plus lots more. Loads of you have been so generous so far, but we are still in start-up mode and need your help to make more noise.
If any of you work for a company that might want to offer a corporate donation, or want to help us by fundraising or becoming a member, click here:
This is just the start. We can do this, if we all pull together. And we will. Here’s a bit of motivation, Al Pacino’s ‘Life is a Game of Inches’ speech from Any Given Sunday
https://youtu.be/xboQ1wnoahw . Contains sweary bits, so don’t watch with the kids in earshot!
Well done all, massive thank you, and here’s the next victory…inch by inch.
When I went to see my GP to ask for a referral for an ASD/ADHD assessment. He made one. He listened to me and said he didn't think I had it, but I probably had more knowledge on the subject than him (I was a HLTA in a special school).
My assessment was expedited as I was about the start a PGCE and I was diagnosed within four months. It was very thorough and well done. My husband was there when they performed some of the assessments and was stunned at the difficulty I had with the tasks. There was one with arrows that was impossible, and I had to slow down to manage during the bleep test. There were others too, but these are the ones that I remember. I had to attend on three occasions, plus another to have my meds prescribed. I was treated with respect and dignity throughout.
It was a game changer for me, just as it was for my daughter (and my son who was diagnosed by the community paediatrician at the same hospital) before me.
I've had tremendous successes in my life and shameful failings. Getting a diagnosis is like turning a key in a lock. The door to self-understanding opens for the first time in your life.
I would have got through my (SEN Specialist) PGCE regardless. But I wouldn't have done as well as I did. I was amongst the ablest and organised of my fellow student teachers. I was thriving for the first time in my life. Someone would ask what date something was due in and someone else would say 'ask Jannine, she'll know.' And I did know! I had a grid of due dates taped to the inside of my folder because I finally understood that I would need a constant visual and easily accessible reference point. My tutor gave me unlimited extensions and access to more of her time when I told her about my diagnosis. Just the fact that I had that meant that I never used it. Not once! My PGCE year was the first time that I hadn't lived off extensions in my substantial academic life.
My academic life didn't start well though. I left school in 1989 with my highest grade being an E in English. I didn't attend all of my exams, but I wouldn't have done much better if I had. I was a 'looked after child' at that point in my life. Those were dark, lonely and scary days! Some truly wonderful people gave me love and support that showed me a better way to live, but it was a while after that before I learned to walk a better path. I cannot judge those that fall into crime. At 18, I was homeless. I slept rough in Luton. I remember my feet being so cold and wet that I walked into BHS, took mine off, put a new pair on and left without paying. What if I had been caught and prosecuted? No, it wasn't an isolated incident. I stole food too. And it's s slippery slope! I had nothing and no one. By 19, I was married. I mistook need for love. Vicki came along soon after and I was divorced by 21.
My (abusive) father offered to help my ex-husband get custody of my daughter. Far from this making me crumble as people had expected, love prevailed. All the love, kindness and good examples shown to me by strangers came back to me, and I began down the road of turning me around. Nothing was going to separate me from the only person who had ever given me unconditional love. My baby girl was my driving force from that day to this. I got married again in 2002 and had twins that are equally my pride and joy. They are all happy, healthy and well adjusted human beings - all also have ADHD. Sadly, that marriage didn't last either.
My life has been a bumpy road and I'm not entirely proud. But I like who I am now. I love who I am now. I love, and I'm loved by, the man who is my husband and best friend now. I love all the children and young people who are in my life now. I'm a teacher in a special school, and I am a teacher trainer of ADHD.
I'm also taking an MSc in Psychology, and will eventually do a PhD.
I didn't know peace until after my ADHD diagnosis. I didn't know me. I didn't get to thrive. I was just surviving in a mess and a muddle. As I say, I had amazing successes and shameful falls from grace. The middle ground eluded me, and I had no roots. I have very stable roots now!
Why did I have to wait so long? Why did I have to go through all of that? ADHD is apparent in my school reports and probably in my social worker reports. It should have been addressed a long time ago.
Sadly, too many are still going through this sort of thing. We worry about diagnosing and medicating. Parents worry about being judged or having their children judged. Adults worry about prejudice. ADHD is challenging enough to contend with without prejudice and judgement. Enough of that. It has to stop!
ADHD is NOT an excuse. It is an explanation of a neurological developmental disorder that makes simple things a challenge. Sometimes the challenge is too great, and we develop additional conditions such as conduct disorders.
What if we stop judging what we don't understand and focus on helping and supporting? We should never get to the point where vulnerable children can't function because we won't accept that their needs are reasonable and should be adjusted for. It's not rocket science. It won't cost a fortune. It starts with an open heart and mind.
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 fidget as much, and 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, and 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 day dreaming 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 a few hiccups at university, however.
The whole world changed 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. Everything felt unreal, like a bad dream, I felt unreal, as if I was observing me and my life from afar. So peculiar did I feel that I believed my experience was unique - that no one had ever felt like I did. 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, they are not uncommon in severe depression and anxiety, or after trauma. However, they were extremely unpleasant and uniquely distressing, they robbed me of my sense of self and lasted for many months.
For at least 6 months I couldn’t function at all. I was severely anxious and depressed but because I felt so bad 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!”.
The situation in our schools and also our prisons regarding ADHD cannot be allowed to go on. I have worked in four male adult prisons as a counsellor, and 75% of my clients were ADHD. They were either diagnosed but unmedicated, as the prisons refused to give them ADHD medication; or completely undiagnosed but very obviously ADHD.
Nobody was paying any attention to this matter. These were repeat offenders who were displaying risk-taking and thrill-seeking behaviour over and over again, and getting sent to prison with nothing changing, because nobody was recognising their ADHD, and nobody was medicating them.
It took me five months of nagging, begging and pleading to get one very obviously ADHD 46-year-old man diagnosed in one prison. Nobody in psychology or healthcare was faintly interested. This man was begging and pleading for help to understand himself and why he felt the need to risk take. He is now medicated, out of prison and has no intention of returning.
Now onto the problem in schools. In private practice, half of my clients are teenagers. In every single case the school and CAMHS have missed their ADHD. This is disgusting. All of these clients are displaying very obvious ADHD behaviour, and the impact of the school in not recognising this has been catastrophic. One of my 18-year-old clients had tried to kill himself three times pre ADHD diagnosis. His father has put in a very strong complaint and is suing CAMHS, whom the son had been seeing for two years but they had not recognised his ADHD.
Another of my clients is now on a tag aged 14 because his risk-taking behaviour was not stopped until he came to me. Now he is medicated for ADHD, he is completely calm and not committing any crime. He never would have committed any crime if somebody in his school had spotted his obvious ADHD sooner.
I am currently counselling ADHD clients aged 10, 12, 13, 14, 15 and 18. Several of each in each age group. Not one of these had their ADHD spotted in school. It is disgusting and the teachers are telling the parents that it’s “just George” or “just Emily” and not wanting to label them with ADHD! Yet at the same time complaining about their fidgeting, lack of concentration, not paying attention, etc., all of which are screamingly obviously ADHD signs. I am staggered daily by the lack of knowledge held by teachers regarding ADHD when they are all seeing it and missing it in their classrooms every day.
I am passionate about both these issues. I strongly suggest ADHD training is given to all teachers before they qualify. And every prisoner entering the prison system should be tested for ADHD. A simple test takes 10 minutes and is 100% accurate. This could save a phenomenal amount of money that is being wasted locking up people with ADHD unnecessarily.
I am happy to speak to anybody on this issue and it is my life’s work to ensure this situation is changed regarding ADHD.
Finally, I wasn’t diagnosed ADHD until I was 51. I had been seen by several doctors, sleep consultants, psychiatrists, etc., all of whom commented that I was very wound up/manic but not one of them suggested I was ADHD either. This begs the question whether even the medical experts in this country are aware enough of ADHD. My own case would indicate not.
It was a group of children that woke me up. A bunch of teenagers larking about on the ruins, surreptitiously smoking a poorly-rolled joint. I could see them, but my eyes felt glued shut. I was still alive. Damnit.
Four hours previously, I had driven out to the old castle and sat propped up against what I thought was an ancient kitchen wall. I had calmly written my last goodbyes in my notebook, outlining in detail my name, date of birth, next of kin and so on. I had apologised to the person that found me. Then with extreme clarity of thought, I opened my bag, grabbed a couple of handfuls of my anti-epileptic and anti-depressant medication. I unscrewed the bottle of Famous Grouse (I had wanted Talisker, but times are hard) and washed down what I thought was enough pregabalin and venlafaxine to do the trick.
The teenagers were initially a little alarmed, but they soon figured that I was just a gentleman of the road having a kip, having clocked the empty bottle of scotch. They ambled away to huddle round what looked like a smouldering tampon.
Thirty-seven missed calls. Shit. My wife, mainly, then some from my Dad. No mates. I don’t really have any mates, I’ve always struggled sustaining relationships with people. Anyhow, my recollection of the scenario from here on in is a little hazy, but I must have disclosed my location as the next thing I know, my Dad is driving me to the local hospital with a haunted look on his face.
I had just been sacked from my dream job after a capability hearing. I had only been there eleven weeks, but my boss was frustrated by my absent-mindedness, disorganisation and lack of focus on the job. Little did she know that I was entirely focussed on the job, but to her it just looked like I couldn’t be arsed.
I was mortified. I had spent the last five years doing agency work, schlepping around the country to work with homeless people in such glamorous locations as Tamworth, Kettering and Gloucester – always moving on just before they could kick off with me about my appalling administration skills. They loved what I could do with the punters, often I heard that I had a gift, that I could explain things to people in ways that they understood, that they felt that they had all my attention. What they didn’t love was my notetaking and filing. Often what I did was all in my head, and when I had resolved the problem it was off to the next.
I had got home eventually though, and it was a permanent gig. My wife and children were so happy that I was home. And I had royally fucked it up. Just how rubbish at life can you be that you make a bollocks of such a golden opportunity? That’s why I went to the castle that afternoon. That was three months and thirteen days ago.
I got discharged from the hospital the next afternoon after being wired up to various things. People from the psychiatric hospital came to visit me daily at home. I slept a lot.
It was my wife that raised the prospect of ADHD. I have a four year-old that is very hyperactive, can’t sit still, always does stuff for a joke etc. The typical stereotype of an ADHD kid. My wife had done a lot of internet research on it – we had arguments over labelling such a small child. She had joked that the symptoms matched me entirely. Chronically disorganised. Poor time management. Difficulty regulating emotions. Forgetful.
I had told her to do one, frankly. ADHD was a tag for bratty kids, poorly parented and was an excuse for the pharma companies to make a few more bob, in my view. The more I read, though, the more it started to make sense.
I was exceptionally bright as a young child, very bookish (I was reading Famous Five books at four years old.) I could name you the capital city of every country in the world (and what their flag was.) I always went to bed with a book, and would usually finish it that night – or should I say two in the morning. Things changed for me when I passed my eleven-plus. Suddenly, I was in an environment where I wasn’t the brightest kid anymore. And what was worse, I had to find out what classes were where and get to them on time.
I just couldn’t do it. I would turn up to the classes late, if I made it at all. I would lose everything, lunchbox, PE kit, you name it. The teachers were full of praise for my creativity and ideas, but I really pissed them off with daydreaming all the time. God knows how many times I heard “If you put the effort in…”
I was falling behind with my grades. I got a decent amount of GCSEs, but did dreadfully with my A Levels. By that point I had been written off by the school, labelled as a troublemaker. And as any teenage boy would do in that scenario, I acted up. My attendance was below 20%, I had a penchant for chatting up the girls from the university whilst drinking far, far more than I should.
I went to university because I thought that was what I was supposed to do. It was disastrous and almost killed me, a number of times. I was drinking a lot and got into the drug scene. I was renowned for hosting the best parties (I had an immaculate record collection back then, and was well in with the local dealers), but hardly ever set foot on campus. I bolted after the first year, unable to function.
I followed my passion and fervrent belief that shelter is a fundamental human right and started to work with homeless people, but I never fulfilled my potential. My chronic disorganisation weighed me down. I was great with people when I was talking with them, but I would forget to call them or turn up late to dinner, or interrupt what they were saying before they finished. That tends to annoy people, I’ve noticed.
I just thought I was a bit shit, truth be told. I thought I was lazy and couldn’t be motivated to do anything. I’d have a bunch of creative ideas and forget them all by lunchtime. It’s incredibly frustrating.
Then came the ADHD diagnosis at the age of thirty-seven. I’m predominately inattentive apparently. No shit Sherlock.
With the diagnosis came a tiny wee sliver of hope. You mean I’m not lazy, or stupid or a bad person? That my brain is different from the majority of people? That it isn’t my fault, necessarily?
Lisdexamfetamine has saved my life, I swear down. After the horror and turbulence that peaked three months and thirteen days ago, with medication I now have some degree of self-acceptance that I have never had before. It’s brought me to the conclusion that I am different, yes, but not inferior. That what I thought were moral failings are symptoms of an underdeveloped part of the brain and that there are strategies and people out there to help. I’m not on my own.
ADHD is real. It’s happening to adults and it’s not poor parenting. Anybody that wants to argue otherwise – well, I’ll be in the Regent pub waiting.
I think what's lacking for ADHD is understanding, acceptance & empathy. The headteacher of a primary school in Derbyshire told me that my son's problems are down to bad parenting. Apparently I've not raised him right. Needless to say that my son doesn't attend their school.
A class teacher of another primary school in Derbyshire told me face to face that she won't be able to handle my child and have him in her class. The only way she would accept him, would be for him to have a full time EHCP, so that they could hire someone else to look after him! My son doesn't attend their school either.
It is so heart-breaking that our beautiful and innocent children are not welcomed, understood or accepted.
They don't understand what's going on. The confusion and exclusion is very difficult to deal with both for children and their parents.
I have talked to some parents whose seven-year-old child has a suicide plan, because of being excluded so much in class. That's incredibly sad and shocking.
I believe that the same as autism, ADHD needs to be recognised not just in schools, but every aspect of life. If teachers and schools learn, they can also teach other students about mental health. It needs to be part of the curriculum. I have just signed a petition for that. https://petition.parliament.uk/petitions/202061
If all children are aware, and learn and accept neuro-difference and mental health issues now, then our special needs children will have much better and brighter futures as adults, who are more than capable of contributing to society.
In late December last year, in an incredibly raw state of overwhelm, I painfully drove to a railway viaduct a few miles from my house and only just stopped myself from jumping to my death.
I'd always known I was 'different' somehow. Teachers at primary school assigned my restlessness to boredom, as I was very bright and finished my work ten times faster than many of my classmates. I remember being frequently sent to the head- teacher's office to greet visitors and work on other projects, now realising it was just to get me out of the classroom.
In hindsight, I must have been really irritating, always blurting out my 'know-it-all' answers and telling the class stuff I'd read in my encyclopaedias. Not very many friends in the early years.
My inner restlessness continued into my teens, when my undiagnosed ADHD started to affect my self-esteem. Like many ADHD girls and women, I went completely under the radar, not fitting the 'stereotype' of hyperactive, failing and disruptive. I was frequently top of the class, so how could I have anything wrong with me?
I was just untidy, a bit disorganised, overly chatty, blurt the wrong things, wasn’t I? And I convinced myself that I worked ‘better under pressure’ to excuse the self-loathing I had begun to feel from my chronic procrastination and other issues. Pull yourself together and try harder, Michelle.
Soon impulsive decision making began to make an impact. I no longer wanted to be in the Oxbridge group in 6th Form, in there to apply for medicine. I had had a couple of lead roles in school musicals, so I decided on a whim I wanted to be a professional actor.
From bright working-class kid with a high IQ and a bursary to a private school, I flunked my A levels, luckily being offered a place at a good university to read theatre. But I felt a failure every single day, not for making that choice, but for my scatterbrain and disorganisation. Daily shame.
I never felt I reached my potential, always life circumstances and some dramatic event getting in the way. Pregnant at 22, then self-employment. Two failed marriages. Mother with terminal cancer and her long drawn out death. ‘Making it’ postponed. Again. One day, soon, I’ll get there, I kept telling myself.
Meanwhile, increasing damage to my self-esteem from my ‘life choices’ and daily difficulties was starting to eat away and affect my mental health. This was despite knowing that when I was ‘on it’, I was highly creative, with a brain that could “do a month’s work in a day” according to an old business contact. Full of ideas, energetic and apparently likeable. But I didn't like myself.
I was a fraud, a phoney. They couldn’t see the crap going on in my head, good and bad, at a million miles an hour, relentlessly.
About 6 years ago, aged 38, I decided to ‘fix’ myself, knowing something was wrong. A neuroscientist in York rigged me up to an EEG machine. “Your brainwave patterns suggest you have ADHD”. I dismissed his diagnosis as rubbish. How could I have ADHD? I could sit still when I needed to. I was just rubbish and needed to sort myself out. Come on, Michelle . Metaphoric self-slap across the face.
“Bad mother, with two divorces under your belt. Look at the brains you had, but wasted. Look at all these unfinished tasks and the state of your desk. And you’ve forgotten your sister’s birthday, AGAIN. Can’t sustain a marriage like everyone else. You are a waste of oxygen”’ .
Yet, at the same time, I could be half writing a novel, thinking of 5 different business innovations, dreaming up an idealistic political policy to save the world. But these TV channels in my head would change without my permission, all the screens in view at the same time. Exhausting.
Then came interventions from health professionals. I’d be perfectly normal and happy, then one life event ‘going a bit wrong’ on a handful of occasions spiralled me into a depressive state so deep, I could be dangerously suicidal within an hour. Never lasting more than a few days at worst, I was diagnosed with a ‘mood disorder’ that looked like Bipolar 2, but didn’t quite fit. My drive, energy and enthusiasm was put down to ‘hypomania’. As were the occasions when I’d get intensely focused on a singular project.
“Have some counselling to talk about your childhood, and you’ll be OK.”.
But I still wasn’t.
And mostly I carried on, the next fix would work , to calm the motorway of thoughts in my head. This supplement, that amino acid, this meditation machine with binaural beats, or whatever. This probiotic, that self-help book. Getting all my genes mapped. I’d find the answer one day, wouldn’t I?
Poor choices built on my enthusiasm, impulsivity and trusting nature bit again quite hard in December 2016. I sadly had chosen the wrong business partner for a business idea that was mine and meant the world. In the end, the stress of trying to fix an unfixable working relationship floored me, and I ended up in the care of the local mental health crisis team, after standing close to the edge of that viaduct.
I genuinely believed my daughters and partner would be better off without a failure like me.
It was then that undiagnosed ADHD was mentioned again by the psychiatrist. As I recovered, I discovered that an NHS referral to an adult ADHD specialist was nigh on impossible, and they refused to refer. So I decided to seek a private diagnosis.
I truly believe that not only did this decision transform my life, but possibly saved it. The diagnosis itself lifted most of the guilt. Finally, an explanation.Not an excuse. My whole life made complete sense.
Also, life felt so much easier on medication. No longer the constant motorway of thoughts and ideas at such speed, but calm stillness.I was still me, full of enthusiastic ideas and a feisty spark to change the world, but a healthier version. Like a car that previously spluttered through life with an engine problem but was now mostly fixed. 80% of people treated with medication for ADHD find it of significant benefit as I did.
No more overwhelm. Less tired, more focused, more able to get the boring, necessary stuff done. Still with the same emotional depth, but I could now choose how to react. A pause for thinking time that ‘neuro-typical’ people take for granted, but had never been available to me before. I felt WELL, less tired, at peace.
I told one of my close friends how I felt on the medication.
“I think this is what normal people feel like”.
“How do you know?” she asked. Good point. I don’t know, but I don’t really care. I can manage the second half of my life with so much more ease, peace , HOPE.
HOPE...that's my focus now, for others too.
I can see a UK where everyone knows what ADHD is, there is no stigma, and no child or adult falls through the net or is discriminated against.
A UK where access to assessment and treatment is readily available, and no one has to wait or get the help they so desperately need.
I want everyone to truly understand us.
And I want to fight for this with all that I am to stop others from getting to the very edge as I did.
Please join me in the ADHD Action movement. We CAN do this if we pull together.