Chapter 35 Understanding ADHD Part 2: Lived Experience

hello welcome to am an new Divergent chapter 35 of 52 this is the second of four videos I'm doing recap in Kings College London's four-week understanding ADHD course available on the future learn website which is linked to in the description for anyone coming to this as my first video I'm Strone I found out I was neurod Divergent both autistic and ADHD over the last couple of years and these videos are recapping that Discovery year and finding out about the new me or the me that had always been

uh week by week from a complete standing start uh as well as a link to the Future learn course I'll also put links to both ADHD and autism self tests in the video description test uh text if you're interested in looking into either of those more these for understanding ADHD videos are basically me recapping my course notes and personal Reflections from taking this course around 8 months into my Discovery year after after various experts spotted I had significant ADHD presentations on top of my a

utism diagnosis which had already had for a few months at this point but I hadn't yet got a formal ADHD diagnosis too I was just on a a Learning Journey to to find out more um co-occurring ADHD and autism are way more common than people have realized it's rapidly turning out um just to keep reiterating it's a it's a presentation increasingly known as audhd but these few videos are specifically on the ad D aspect of that spicy double combo deal so the second week of the understanding ADHD course

is all about quote the the lived experience of ADHD from multiple perspectives um which sounds great in theory we're all about the lived experiences when we're living with the experiences um right but look I'm just going to say upfront about this video having been through and reviewed all my study notes from week two of this course now I personally do not like this course as much as the four-week understanding autism course I kind of gushed over in chapters 21 to 24 of my channel and I'll explai

n why I didn't notice this at the time I initially did the course um I was just interested in finding out more about ADHD but looking back on it now the vast majority of the case studies and people consulted about lived experiences of AD ADHD are not people with ADHD they're people with lived experiences of people with ADHD from non ADHD people whether that's parents of ADHD kids or teachers or psychiatrists or GPS it's only towards the end of the week 2 modules we finally hear from people who h

ave ADHD themselves and that really irked me when I reviewed the course particularly in comparison to the understanding autism course I did previously in which actually autistic voices and autistic academics are integral to formulating that understanding actually ADHD people seem almost like a tokenistic bol tone to helping non ADHD people understand ADHD here and it just it just really bothered me um anyway having said all that I'm still going to press on using these course notes as the basis f

or this little ADHD miniseries within my own series a because I'm doing that whole week by- week recap of my Discovery year and this course is what I was doing and thinking about at this point in the journey and B because the information is still fundamentally useful even if the way it's been presented I find slightly discordant in retrospect um to be fair the blurb at the start of the course does say it's for health and education professionals to help them understand ADHD as well as for people

personally affected by ADHD themselves and teaching the non-adhd people that we as adhders often have to rely on who are are often ignorant as [ __ ] is no bad thing so I'm not going to be too salty about or labor this whole thing of minimizing ADHD voices in an understanding ADHD course other than to say I hope future versions of courses like these have a better balance of of voices than this one but I will throw in a bit of my own and others lived experiences of actually being ADHD towards the

end of this to counterbalance a bit of the the is what it's like for normal people to have to experience and handle the strangeness of adhders narrative that just occasionally comes through in these modules a narrative which can do a Run and Jump for most of us obviously anyway all those cavat aside there are a number of case studies and personal experiences highlighted during week two the first of which were primarily around kids and parents of kids but it's useful reading this stuff for late

diagnosed people too so for examp example Shelly the mom of a boy with ADHD who was described as a little wild in his younger days she got shunned by other parents for not being able to control her kid um how the messaging that she just needed to be a stricter parent was reiterated by their doctor like Jesus wept uh how his early schooling affected his well-being how a well-informed senen Which special educational needs teacher finally picked up unlikely ADHD and that none of his disruptive beha

vior had any malice behind it just that he struggled to sit still that he was easily distracted that he needed to hear instructions more than once before processing them that he'd started to feel bad that he was seen as different and his self-esteem took a total nose life eventually leading to intervention a move to a new more inclusive school where he was treated as an individual nurtured educated in ways that worked for him and led to a complete turnaround in his experience another case study

is Stuart the adoptive dad of James who was another kid with ADHD and how difficult it can be to parse ADHD from other behavioral issues particularly with kids in the care system with adverse or traumatic backstories as well as other conditions that may be co-occurring so James is described as a busy kid with a very low boredom threshold who would only play with toys for a minute or less before jumping from one thing to the next to the next to the next and this Behavior will not necessarily be t

he case if you're autistic as well as ADHD uh by the way the two conditions mix in unpredictable ways um and you can obsess over toys for years with ASD but for James this flitting from thing to thing was initially identified by experts as an anxiety attachment issue and Stuart talks about the difficulty and eventually getting an ADHD diagnosis as pediatrician seemed weirdly resistant to going down that route and he felt they had almost a confirmation bias looking for attachment issues and Traum

a and matching aspects of what they were seeing to their initial assumptions that it must be that because that's what traumatized kids in the care system have you can basically get gas lit by Services because of both unconscious bias and just by lack of awareness of ADHD um this is clear really happened to so many others who were missed whether in the care system or or not um Stuart's also described as a really bright kid despite his difficulties uh on focusing and it eventually turned out as we

ll as ADHD he was also autistic he struggled badly with Transitions and had sensory processing issues so struggled to settle in school settings I started lashing out it says um on route to being excluded for being disruptive uh until the adoptive parents made the decision to home school uh homeschooling while they looked for more inclusive education settings and got them into the cams system um which is Child and Adolescent Mental Health Services here in the UK and worked on seeing how he respon

ded to different ADHD meds and finding combinations that that worked for him an adoptive mom talks about how much they had to do to push the syst them forward themselves to get their kid the help he needed again as uh so often seems to be the case you have to push and self- Advocate to get the results you need which should not be the case because often the people who need help the most are those less likely to have the wherewithal to push and self- Advocate but here we are she also talked about

how shocked she was that no one in all the expert settings they they dealt with from the local education authority to the educational psychologist they dealt with to the special educational needs coordinator to teachers were remotely joined up or even initially suggested ADHD as a possibility because now that they have the diagnosis for their son and understand it it seems like the most obvious and intuitive thing in the world but it's just it's not seen by so many of those who don't get it and

don't properly understand it she also talks about her frustration with politicians and policy makers not giving enough attention to early identification and support and says to parents never assume that the quote unquote experts know more than those with lived experience they don't trust your instincts trust your intuition and fight for the support you or your loved ones need um Stuart the dad who spoke previously also talks about how having uh a label is not a negative uh as a lot of people fra

me a diagnosis like particularly because they now know he's not his previous label of kind of naughty disruptive peculiar kid it's like I said in one of my previous videos getting a neurod Divergent diagnosis doesn't put you in a box it allows you to step out of a box and for me there needs to be an absolute paradigm shift and understanding this one key point about neurod Divergence from here the course modules talk to a head teacher about teaching ADHD kids he talks about his four factors uh he

works to of openness so kind of listening to teachers when they talk about inattention or hyperactivity or impulsiveness as well as parents raising concerns proactivity so coordinating cams senos parents and GP support for example not just leaving issues that need to be dealt with holistically for others to sort out supportiveness so dealing with the individual student and the student's family's needs first and foremost over labels and diagnoses as well as supporting staff with resources and ad

ditional support for them and finally culture in terms of leading change from the top which all sounds like good stuff if it actually happens teacher training for neurodiversity that head teacher concludes is still not comprehensive enough and ADHD Management in particular is a really complex area and just sanctioning kids for bad or disruptive or inattentive behavior is clearly not the answer it's it's about supporting emotional and learning needs using targeted academic support to close any ga

ps in learning styles and working with the child or student to get the best out of them not against them for example um letting a kid draw or stim while listening if helps them concentrate and staying in close contact with parents as kids will often behave quite differently at school than they do at home and being aware of things like a 2E profile that I've mentioned previously as well I'll put some links to to that again in the description um 2E is like where kids are neurod Divergent but also

considerably above average intelligence and will often get good grades not be disruptive but have a really damaging internal dialogue about being and feeling different and and high levels of anxiety which is really hard to spot and one of the most likely groupings of neurod divergent kids to be missed by the system and then just left to drown a bit on their own as they get older Without Really knowing or understanding why um hello to every late diagnosed ADHD or watching basically um next we get

Colin Woodcock an educational psychologist from the University of Southampton who finally celebrates the the growing narrative that neurodiversity is a brain difference not a brain disorder and that there are considerable advantages to having neurod Divergent brain wiring in addition to the disadvantages and challenges laid down by the so-called medical model um of regarding anything out of the ordinary as an abnormality he describes people with ADHD as Dynamic curious imaginative and great at

task switching um those traits may not gel wonderfully with the demands of the modern-day classroom and its structured approach to learning but that doesn't mean there's a problem with the brains themselves just that ADHD plus environment equals outcome different environment different outcome and lots of people he points out Simply learn new skills by doing them and learn from seeing immediate results and that approach to learning has existed long before structured class room environments have m

aybe and here's a shocking concept when something's not working change the environment not the child um this was this was great and made me sad that we don't hear more of these types of voices and uh also sad that there are massive shortages in the numbers of enlightened educational psychologists around to advise educational establishments on practices that don't damage huge numbers of kids um I'm just going to skim through the next few modules as there's more case studies from support workers w

ho work with families psychiatrists on how they diagnose and treat ADHD which was interesting they really they really extol the virtues of meds where just ADHD is present but that not all kids presenting with ADHD symptoms like impulsivity distractability and problems with attention will necessarily have a neurodevelopmental condition which is true that often those ADHD like symptoms could be the product of neglect or attachment difficulties or learning difficulties or depression or anxiety or s

ignificant overlap with other neurodevelopmental conditions like autism or sensory processing and that often ADHD occurs concurrently with those other things and that separating the two out can be really complex and that just prescribing Med when you spot some ADHD like symptoms can be quite a lazy way of dealing with more complex ADHD and wider neurodiversity um which which is true and just to insert my own take here because that take on not being lazy and prescribing meds is really valid but I

don't want to minimize the other side of that and the huge benefits of ADHD meds in the right circumstances either I know that there's a sizable element of the neurodiverse community who see all meds as the devil's work and that people's brains are beautiful just the way they are and that brain chemistry should not be tampered with and I kind of get that perspective particularly where there's more or likely more than just ADHD at play but there's always two sides to any story and what's right f

or one person won't always be right for another and that's why all the stuff has to be so nuanced and not cookie cutter um like this is what you do for these people it's I've I've been experimenting with ADHD meds on and off um myself these last few months and I'll do a separate video on that there have been both pros and cons of that for me but for many many people with ADHD taking meds is a huge boost to how they feel about themselves and how they function effectively in the world I 100% agree

it's not and should not be the default answer for everyone particularly when there are co-occurring conditions but it's it's all about experimentation and patience and self-awareness which is sometimes really challenging for us particularly when you come to medicating those differences later in life so yeah I just wanted that kind of balanced point on on meds there uh the second psychiatrist they spoke with I'm not the great educational psychiatrist uh I mentioned the the second one he gets rea

lly stuck on talking about impairments and disability which is really quite disheartening and this is where the course kind of lost me a bit in terms of me having Universal Goodwill towards it because there's far too much unchallenged medical model and neurotypical perspectives about how to manage ADHD as if it's a flaw as opposed like I mentioned at the start to the understanding autism course of the same um on the same platform um which was heavily influenced by autistic people and I would who

leheartedly recommend this one it's interesting but I'd be far more inclined to recommend something like the inflow ADHD app with its learning modules than this course or binge watching Jess mccabes how to ADHD video channel um I'll put links to both of them in the description as well and the off chance people aren't aware of either because they're they're both absolutely brilliant ADHD resources but anyway like I said this is me recapping my Learning Journey and this is what I was learning abou

t ADHD 8 months in my Discovery Year we' have a lot further to go on all this stuff um anyway next we get a gp's perspective enroll in referrals for ADHD assessments as a case study and honest honestly I was starting to get a bit pissed off with essentially all of these lived experience case studies being broadly about the lived experiences of of neurotypical people dealing with and handling people with ADHD not the lived experiences of people with ADHD and repeating myself it's kind of weird to

think like given that ADHD is way more common than autism the understanding ADHD seems to be even less well embedded in some ways than understanding autism particularly in the the quote unquote system where that understanding and empathy is most needed but here we are just just not enough time money or knowledge in the system um next module was from teachers perspectives and how teachers experience of working with kids with ADHD shaped their beliefs about ADHD I was just yeah I was just feeling

pretty deflated at this point going back through all of these with professional Educators still believing in studies conducted in the last decade that ADHD is the result of environmental factors learned behaviors lack of structure No Boundaries with much lower understanding of any actual Neuroscience or neurod divergent heritability or the fact ADHD like other neurod Divergent conditions is a lifelong condition not just a kids issue like yeah really disheartening module this one the broad concl

usions to all of these are assume complexity when dealing with people with ADHD because it's rarely been a straightforward Road or lived experience for them another overriding common factor is stigma Prejudice and misinformation about what ADHD is we're getting better in this area particularly recognizing the inattentiveness subti of ADHD better not just the hyperactive impulsive but there's there's still some distance left to run on school experiences in particular the main issue is differentia

ting the learning in classroom needs and experience of neurotypical and neurod divergent kids and just how different those learning styles can be and how difficult and deflating and non-inclusive quote unquote standard schooling can be for ADHD kids I don't personally know whether the answer is splitting neurotypical and neurod Divergent learning up but I know I would have found my own education a hell of a lot more conducive if we'd been able to move around and to task switch to whatever inform

ation our brains were interested in soaking up at any given moment like throwing my autistic need to learn things chronologically too and school was really not great for my learning preferences which were all broadly formed later on but I also accept the disruption all of that would cause to more typical learning style and focused working and can only conclude at this stage that these are really tricky questions going forward finally at the back end of all the week 2 lived experience modules we

finally get on to the lived experience of Katherine the late diagnosed ADHD mom we met in week one of the course and Katherine talks more about the stigma around ADHD for adult diagnosed adhders and reiterates how fundamentally most people just do not understand what ADHD is she talks about why so many adults are now self-referring because of institutional ignorance within the system in being able to recognize adult ADHD at least here in the UK people self-refer because GPS don't spot ADHD or pi

ck it up therapists don't spot or pick up pick it up psychiatrists don't spot it or pick it up so it's left to individuals to self- diagnose pick up the pces of an at best wildly inconsistent at worst wul incompetent system and and find themselves specialist help or pay to go private to actually work out what's going on with them and it's it's pretty damn tragic that this is still the situation we're in so Katherine sets out that she did not ask her GP to refer her to an ADHD specialist she inst

ructed her GP to refer her to an ADHD specialist and the the GP said you don't look like you have ADHD like how many of us will have heard that and she had to present more and more evidence and insist over and over again and discuss getting a private diagnosis if the NHS system was going to fail her um she did end up waiting for and getting an NHS assessment herself but she got her kids assessed privately cuz the system was failing them too particularly her daughter who was bright and masking an

d and wanted badly to conform and fit in but was struggling really badly to do so and the teachers weren't spotting it just saying she doesn't focus enough which sounds very familiar to the consistent and recurring feedback I got from my childhood and teens school reports so because her daughter's teachers didn't see what she as a parent saw and didn't listen to the fact that both of the girls parents had now had adult ADHD diagnosis the system just wouldn't progress her daughter's diagnosis and

they had to go private at which point people knew what they were doing and what to look for and knew the right questions to ask and the girl got got a diagnosis almost straight away and they finally started making some progress as a as a family um stuff like this just makes me want to scream it it really does and it still happens Time After Time After Time uh Katherine also talks a little about stigma from her own wider family who also didn't understand ADHD and just felt like it didn't apply t

o her she wants the discussion to change from primarily focused around labels and diagnosis to just differences um don't we all and that those differences can contribute to great things if cultivated properly she touches on the fact that ADHD brains have created and do create wonderful things many times over and that's another video I'm going to do before wrapping up the series just look at all the fantastic ADHD brains in music and the arts for example yes having a diagnosis is empowering she s

ays having the knowledge that your brain is a certain way is empowering but the conversation should be about neurotypical brains and neurode Divergent brains and how those two thinking Styles work together to elevate both and I could not agree more with that conclusion I talked a bit about it in my um chapter 20 postcard from the future video and I'm going to come back to it again in a more considered way before I I wrap up this series because it's really important there's a brief final bit in w

eek two about the concept of what was briefly referred to as adult onset ADHD symptoms which became a thing for a while and Confused the the landscape of it the context of it was a reaction to another thing that was wrong but was considered gospel for a long time um so in the 1950s in a paper about ADHD in the journal Pediatrics ADHD was very much seen as a childhood disorder and the paper sets out that quote in later years this syndrome tends to WAN spontaneously and disappear we have not seen

it persist in those patients we have followed to adult life end quote um this is wrong and in last week's video I looked a bit more at that but that was the the context of the pendulum swinging back the other way that ADHD could also suddenly emerge in adulthood and while the course itself leaves that as an ongoing open-ended question for me with lived experience of ADHD that's also wrong and clearly wrong and the broad consensus now agrees with that although I didn't know I had ADHD until adult

hood for me it 100% did not show up in adulthood it was just diagnosed in adulthood in my videos I did about my childhood and teens I read out teacher comments from some of my old school reports about inability to stay focused getting distracted difficulty organizing myself acting up not living up to my potential the ADHD symptoms didn't show up in adulthood they were always there just no one knew what they were looking for when the adult environment you're in becomes increasingly less conducive

Ive you become increasingly more challenged you forget altogether about thriving and concentrate on just surviving like welcome to the party so-called adult onset ADHD you were always there being coped with and squashed down until you couldn't be anymore um I've done enough of my own lived experience uh probably to the point of excess in the last few videos I did before looking at this ADHD course but in terms of ADHD specifically just to address the balance a little more of most of this week's

modules recap I wrote this down in my notes and I don't know whether they were my thoughts they do sound like them or whether I cribbed them from somewhere but if the latter please do flag and I will gladly give credit but basically hang on when you're an ADHD you just feel different from other kids from a very early age when you're a relatively bright ADHD you can probably cost through primary school with minimal effort and do well there it will start to get gradually tougher in secondary scho

ol you'll find consistent working difficult but still probably be able to skate by pulling last minute all nighters because impending deadlines create adrenaline and cortisol to make up for your dopamine motivation deficiencies if you get to University you'll probably struggle because of the lack of structure and if you get to a masters it may take you years or never happen at all due to multiple deferrals and pauses and dropouts much of the aspects and projects of your life probably feel starte

d but incomplete you'll probably try multiple jobs start them with enthusiasm then run out of steam leave bills unpaid feel distracted have difficulties with sequential processing find yourself frequently zoning out not really listening thinking about something else have difficulty starting or sustaining relationships mood swings and emotional disregulation anxiety and depression maybe find that anti-depressants make you worse if you try them because serotonin has an adverse effect on dopamine y

ou may feel super creative sensitive a perfectionist you might routinely overspend your finances fidget feel always tired swing from boisterousness to withdrawn lose stuff be impulsive irritable easily frustrated feel wired feel weird can't finish anything get bored always late have insomnia be overly talkative then crash and have nothing be forgetful contrary Mis important information feel anxious be pushy to get your way and frequently seem to upset others this is a lived ADHD experience I'll

finish with two things I definitely did swipe in my ADHD notes the first of which is a a quote from Jesse J Anderson which is ADHD feels like you're never doing what you're supposed to be doing so no matter how productive you are it feels like not enough and the second is a quote from Jess mccabes fantastic Ted Talk failing at normal which again I'll I'll link to which is ADHD is not fidgety people that can't focus and are lazy it's people with brains that are chronically under aroused it's havi

ng an executive function deficit that makes it hard to get started with things and it's struggling to keep up with a society that's not set up for your neurotype you are not broken you are not weird you are not stupid you're different you're beautiful and you're not alone welcome to the tribe end quote uh Jess mapers is just great um so yeah sharing stuff like this is what lived experience week should be Kings College London for a future reference not psychiatrists and teachers talking about def

icits and impairments um anyway week two of this course did annoy me a little looking back but I'm going to stick with doing these Recaps and completing this little ADHD miniseries for my own channel like um yeah so share this subscribe to alerts all that stuff and uh let's see what week three of the ADHD course brings next time um cheers for watching and uh yeah just about still happy New Year cheers