Do many people think that ADHD is not real?

[Ilovecranberries]

Was having remote drinks with a friend and his wife yesterday. She's a secondary school teacher in a quite "rough" school (not in the UK). I was quite surprised when, discussing something quite abstract about how different people think and react differently, she had said quite breezily that the majority of teachers she knows "don't believe" in the existence of ADHD.
Incidentally, one of my children is currently being assessed for it, but it is not news that I had shared socially outside of my immediate family. I wasn't offended, but I wonder if it is actually a widespread view behind the closed doors?

And that fairground/sepia example is absolutely nothing like my experience of medication - for me it's more like this.

You know those days where you look at your watch and it's somehow 3 hours later than you thought it was and you go "OMG! Where did the time go?!" That was most days for me, without medication. I would suddenly find it was 11am, or 2pm or sometimes even 5pm and I had no idea what had happened to the previous 7 hours. It's quite distressing and frustrating because you never get anything done. Medication gave me that time back. I look at my watch and it's 9am. I can plan my day, I still don't get everything I want to done but I have a fighting chance at doing some of it.

Also you know when you live with somebody who is a slob, and you go to have a shower only to realise there are no clean, dry towels because they are all in a festering heap by the bed? Or you go to make dinner and every single plate and pan is dirty. Or you go to leave the house and you can't because somebody has borrowed your key and not put it back. Or you go to look for an important document and find that the folder is no longer alphabetised and everything has been shoved back in together randomly. That was my life, I had nobody to get angry at and leave because it was ME making all the crap hard work for myself, I would simply do something (eat/shower/use a document) and instead of finishing the task I would just leave it and wait for it to magically be sorted. Which of course, it wouldn't be. So it would get to the time I needed the thing, I would be inconvenienced, I would get really angry at myself (and it would exacerbate other issues of poor time management etc) but nothing ever actually changed and I was unable to put in place systems. I was constantly playing catch up - having to wash up before I made food, reorganise the cupboard when I wanted to find a folder, etc, which gave me even less time and contributed to the "How does everyone else fit things into their day??" feeling. Medication doesn't make me completely better, but it seems to allow/remind me to look forwards and go oh, I'll just stick that stuff in the dishwasher now before I need it later. It's not automatic, but I do actually have the thought to do it now, whereas before it wouldn't occur to me in the slightest. It was like there was a reminder function in my brain which was set to do not disturb. Now I get the reminders, I don't always act on them, but at least I know I should!

There are probably other effects but those are the two that have had the biggest impact.

How utterly depressing that we even need to ask whether people “think” ADHD is real. DS1 was born 16 weeks prematurely and has ASD and ADHD, both of which have almost certainly resulted from his extremely early birth and the subsequent damage done to his neural pathways as they formed. This is what I’ve been told consistently by every one of the neonatologist and paediatricians involved in his care over the years. But no, Random Person From Randomshire knows better than the medical professionals or I do. I’ve been accused on MN of “talking shit” and had anothe poster inform me that their child was also premature and doesn’t have ASD or ADHD so my son’s diagnosis must be wrong. I’ve had a school senco asking me “what is it you want from all of these diagnoses?!”. I’ve had his class teacher - who went on to become the senco after we left the school - accuse me of lying and paranoia and of fabricating all of DS’s SEN even though he already had a full-time 1:1 LSA at that point. His needs are enough that he now attends a special school, with his place funded by our LA- and yet we have to fight continually for the support he needs and against other people’s baseless opinions. It’s bloody hard work being the parent of a child with ASD and ADHD (yes they are two separate conditions!!) and it’s even harder being that child. It’s worrying and baffling that there’s still so much ignorance.

@BertieBotts that totally describes my life. DH can never understand why I am always convinced I'll go back to finish a thing, but never do. (hence trail of destruction)

I'm due to try medication for the first time next week and I'm very excited/nervous about it. Even a small improvement will be great.

@BertieBotts I understand exactly what you mean, and I genuinely apologise if it came across as though I was implying it's better not to medicate, or that individuals should try harder to enjoy the benefits and overcome the negatives first.

Iirc you were dx as an adult, so I'm going to hazard a guess that you've had a lifetime of being told you could be organised, punctual, focus etc if you just tried a bit harder, and generally made to feel like a failure. Rather than having the opportunities to experience the positives of adhd and try out coping strategies so a lot of that mundane shit might become automatic by adulthood. I realise that no matter what for many that still won't be a possibility, or they might still decide the negatives outweigh the positive. So I suppose what I'm saying is that society and outside influences set up people to fail at one before they can choose which works best for them. It's not a fair choice. Even if someone has fantastic supportive parents and a dx at 7, chances are the world will have already told them they're a failure.

I have the hyperactivity as well, and with the right outlet I believe it's probably easier to see the obvious benefits than it is with just the inattentive. But it's more than that, it's honestly fun inside my head without meds. And it's absolutely understandable that even in a perfect world others might not ever find it fun. (Even though that goes against the nt assumption we all share the same personality). But I suspect there are plenty of other people that might have shared my experience if they'd ever been given a fair chance.

(It isn't aimed at parents of dc with adhd needing to try harder either, it certainly wasn't wonderful understanding parents that formed my experience, anything but!)

@bertiebotts yes! I personally didn't become a zombie on meds, it felt more like my brain isnt jumping from thing to thing quite as much. The time thing is so true :I'd send my kids to school and be like right, I've got 7 hours to tidy up and make supper and yet 2 mins later it was school pick up and the house was still a mess and I hadn't even thought about supper and I didn't understand where the time had gone because I'd been busy all day. One thing I do find is that I'm brilliant in a crisis situation because I'm used to having to get myself out of jams that I've gotten myself into. I end up feeling like a failure a lot of the time too.

Another thing that is hard is actually getting help- I need to speak to the doctor, but you have to call by 830 am. I inevitably suddenly remember at about 3 pm. I ended up coming off anxiety meds because I kept forgetting to call the pharmacy to reorder them and running out despite having symptoms from stopping suddenly.

Also all the ' you wouldn't forget something that was important to you' isn't actually true. That's where a lot of my anxiety came from.

It's not all terrible. I do think some things I do better because of adhd. When I get fired up about an idea or an interest or a hobby I get quite obsessed and madly research everything there is to know about it and hyperfocus for hours on end if its something that catches my interest. Sometimes my impulsivity is also good. I proposed to my dh impulsively on a date and that was definitely a good thing!

I could see with one of my children that he has a lot of my adhd traits and I got him help pretty quickly privately, despite the cost being prohibitively expensive and a big struggle for us. (healthy young minds where we are won't see him for several years and they were beyond useless for his older brother who has asd and anxiety, despite being under a hospital paediatrician for physical issues for years who pushed them for a diagnosis. Took 2 years with 2 appointments to get a diagnosis and then discharged with no follow up support). His self esteem was being eroded daily, he is impulsive and hyperactive and highly emotionally disregulated. Every morning he would wake up and say today I'm going to behave and invariably he was tantrumming not even half an hour later. His behaviour is not under his control. He's not perfect on medication, but it gives us a chance to actually use behavioural strategies with him and have a chance of helping him manage his behaviour.

@trainspottingwelsh that makes sense. Managing in the world that follows specific rules and structure is what causes the problems, not adhd itself.
Theres nothing wrong with me being hyperactive - but other people struggle to cope when I talk a mile a minute and interrupt them. I'm expected to pick up my kids on time from school and remember to get food in and wash clothes regularly and run a house and be at work on time, and remember to make (and attend) appointments and honestly that stuff is just crazy hard!

Yes I was diagnosed as an adult :) I had a huge amount of feeling a failure before dx and to be honest I still do. I see it (ADHD) as the reason I've struggled, because it was always a question that went round and round in my head for about 10 years from age 16 (ish) to age 26 (ish) - WHY can't I do what other people can do, WHY is this so hard for me, WHY can't I just...xyz, WHAT is stopping me. To have the answer brought so much healing but I don't often see it as a positive. Occasionally I do - I think it's probably behind my creativity, and my quickness of thinking and ability to wing it, and my curiosity, I love the way I have random in depth spirals of knowledge on obscure topics (and I'm really trying to go with this now and make it a career) and I know that the true friends I have who value me for me appreciate parts of me which would probably not exist without ADHD. But all of those good things don't really make up for the stuff that I find it makes really hard. On a bad day I reckon I could do without all of those things.

It is interesting what you say about experiencing the positives because I was literally just chatting to DS1 about this. He is diagnosed as well but has never seen it as a failure, never even particularly experienced the behaviours that led to the diagnosis as being a problem. I got him assessed because of similarities to me rather than because of massive difficulty, and so it has (so far) never been a struggle for him. We haven't presented it to him as "This is why you're bad" but "I have this, and it's caused problems for me, I don't want it to cause problems for you". So he just thinks it's as incidental as being a Libra. And that's fine by me although it's a bit strange because people assume he will be embarrassed by it or wants it to be a secret. He's not embarrassed, he thinks it's cool. He's told all his friends and they laugh and joke about it together. When he does something they find "random" they shout "ADHD level 100!" at him and he does something else to make them laugh more. It's all good-natured, not bullying, and he really does just find it a positive part of who he is and that's great, I think (of course I am worried I am doing this all wrong and screwing him up forever, but you know).

But anyway, what I really wanted to say was I do not find that medication dulls any of the positives for me in the slightest. My internal monologue is the same. I still have to write or speak things out loud if I want to properly follow them without getting lost. But I didn't seem to have any effect from the stimulant ones. Perhaps it is like that if you do. I have to say I was kind of envious when I read threads on reddit when people start medication and feel like it's a switch where they can turn on and off "normal". But no, I don't want to tone down or disable the fun parts, but medication doesn't for me. I think it's normal that it works differently for different people, so I just wanted to offer another perspective :)

For the posters that have been diagnosed as adults, how do you feel about this questionnaire?

add.org/wp-content/uploads/2015/03/adhd-questionnaire-ASRS111.pdf

I am incredibly curious about the "You don't forget things which are important" thing and I asked DH (who is super executive function robot manager brain person) how it worked and he was like - because you think about things that you need/want/decide to do periodically, and if it's important, your brain kind of goes "That's important!" and marks it so that you remember. But if it wasn't very important then you don't pay attention to it and it's gone.

my brain is absolutely nothing like his at all. My brain only seems to exist on connections, I do not have completely unconnected thoughts floating around to remind me of useful things I have decided or promised to do. I have a thought because of something I read, or see, or hear or somebody says to me and that inspires loads of little tendrils which branch off into other thoughts.

For example, the other day we drove past a building decorated with bananas:

• DS2 loves bananas, I really ought to buy some more

> This branches off into me mentally wandering around the supermarket {may branch off into other shopping related thoughts} > I remember that we don't buy bananas in summer because of fruit flies, I start thinking about how annoying fruit flies are, maybe we should get some traps. {may branch further into other insect thoughts} > I think about some other little anecdote or cute thing (toddler) DS2 has been doing recently {may branch further into more toddler thoughts}

• That song "and then you go bananas, go go bananas" starts playing in my head

> I think about the friend whose kids were amused and shocked because their (German-speaking) summer camp leader taught them the song and added the verse "And then you shit bananas, shit shit bananas" I think about how I haven't seen that friend in ages and I should text her {probably branches off into imagining evening out with friend or memories of friend or other people we both know} > Something about youtube because that song was on a crappy youtube video DS2 was watching the other day (this is fuzzy because there are too many other thoughts to really think all of them properly) > Something really vague I can't remember about a cartoon gorilla > A sense of a blue background that seems to match the style of the banana design. I think it was a pencil I had when I was about 12. The feeling of the design on the pencil (not the physical feeling of the pencil, but the way the design felt when I looked at it).

I was on my way to a job interview at the time. So I probably should have been thinking about the job interview, but I was busy having 22 thoughts related to the banana decoration on the building. And in fact there were probably other tendrils remaining from some other previous or simultaneous thought lines which were present in my mind as well. I did fine at the interview, BTW. I didn't accidentally talk about bananas. But no, whether or not I remember something is not generally related to whether or not it was important, it's based on whether or not something else happens to link to that thing at the correct time. For example, I still have not texted my friend to meet up and nor have I bought any fruit fly traps or bananas, despite the fact I was in a supermarket this morning. At that point I was thinking about something else completely different, and they weren't on my shopping list, because I wasn't thinking about them when I wrote that, either. But I probably wrote the shopping list due to whatever changes the medication makes, so it's a start.

Bubble I did that in ADHD CBT. Then I had to do it again at the end and see if there was an improvement. I can't remember if there was but I didn't think much to the therapist I was seeing at the time.

Oh crap I messed up my symbols so that it actually is completely unclear which is a tendril and which is a branch. Oh well.

Thanks.. I just wonder sometimes...

Oh, do you mean is it accurate? Yes I would say so. It's a screener. If you're scoring in a fair amount of the grey boxes then it's worth following up, if you feel that would be of benefit to you.

I can function perfectly well on meds, and I suppose it must be a similar experience to nt concentration, where eg I can just see the task before me and perhaps hear the radio as background noise. Rather than seeing and hearing the entire surroundings equally in glorious technicolour, simultaneously following 50 different lines of thought and performing mental gymnastics to give the task the required % of my focus and trying to juggle the competing distractions for those I can balance with the task. Or hyper focus where I wouldn't notice a herd of stampeding buffalo. I just prefer the adhd lack of filter the majority of the time!

The banana explanation is exactly how my mind works. I remember as a child being really confused when others didn't seem to recall things or think in the same way. I assumed everyone would remember the route a second time because it was take the exit at the fruit flies, left at the gorilla thought and so on. I find it extremely helpful when I need to dredge up something that was only on the periphery and can do so by linking it to whatever other things were occupying me at the time. Or some inconsequential detail hours, weeks, years later that an nt brain naturally filters out.

It's one of the reasons I hate the bad concentration stereotype. Whatever our natural abilities it's something we've all had to become bloody brilliant at because we're constantly concentrating on hundreds of things at the same time, unless it's hyper focus. Both of which require extraordinary levels of concentration.

See the tendrils going off in mad directions makes sense. I don't tend to have linear conversations. I kind of interrupt myself when another thought pops in my head and go off in random directions and then sometimes eventually circle back to what I was orignally talking about.

What I find interesting is that my memory for people's name and certain words is very poor. I don't think it's a weakness in my memory but rather in the attention initially and in the encoding stage. If you think of memory as like a giant library, with the old fashioned library index cards, a nt brain will go ah yes I need xyz and look at the index card and pull up the relevant person's name and then their associated details. Whereas when I try remember something like that I usually have to hop around backwards from maybe some things that might be connected to that person or I was thinking of when I met them or other seemingly random things until their name is jogged up. To me the way it feels in my head is that at the stage where I learn things like names, I'm distracted because my attention is all over the show, so the name doesn't get filed in the right place so when I go to retrieve the details the index card is misfiled and I have to use other ways to find it. It's like my brain is a bit more jumbly. It's a lot more work and I feel a bit stupid.

Yes, exactly, but because I now know my brain/memory works like this I just don't expect the index card thing to work any more. I externalise things like that with things like Notes on my phone and Google Calendar which syncs automatically everywhere.

I used to get very frustrated because other people (e.g. parents, teachers, peers) have the expectation that the index card thing is a given and everybody has a system like that, so I assumed that I should as well, except I lacked the visual image of that, nor the knowledge that most people don't have the tendril thing going on (well, I'm sure they must on some level, but probably not as much as it does to people with ADHD).

Everything is tied together using the string. So if I follow the right string eventually I will find something again, and most things are linked to several different strings, but if I just try to look at it all at once it would look like a stringy mess and you can't make out what connection goes where.

I was just thinking about this metaphor/explanation after I wrote this post and went to the loo and got myself a snack. I was trying to be observant, so I noticed that while I was sat on the loo I looked at the cover of DS2's book which was on the floor and has lots of different pictures on it. There was a tiger and I thought OK, I wonder what thought spiral would come from the tiger, only to notice that nothing did, because at that point I was thinking about the post I'd made and some of the banana-inspired images or feelings, and some other post I'd read earlier on MN and this follow up. And maybe also because I've seen that tiger loads of times before. So I saw the tiger, but I didn't really register the tiger. (And if I was neurotypical I'd probably think what is that book doing on the toilet floor, and take it to tidy it away, but I didn't think or do that). I was still on the same topic while I was getting something to eat, and so while I was able to focus on what I went in to do, I could not tell you how close we are to running out of milk or what state the kitchen is in generally, although I think it's probably in need of a tidy up. I'd taken some plates out from the living room before I left the room, but I now have no memory of placing them down and I don't even know if I put them in the kitchen, though it's quite likely that I did.

It was quite interesting just to observe because I think most people when they entered a messy kitchen would register the state of the kitchen, and that would be a reminder to clean it, either immediately or just sort of adding an exclamation mark to a mental to-do list or so on. And sometimes when I enter a messy room, I have this kind of thought, but more often I don't really "see" anything except what I've actively gone in to do. But another time (like when I was going to the job interview) I see something random like some bananas painted on a building and it starts a whole thought spiral going.

Anyway by the time I got back I decided this was boring and moved on to something else, so I don't know why I've decided to post it all now

@AhBalix Yes Lack of focus. Fidgeting. Forgetfulness. Lack of organisational skills. Procrastination. Impatience. Interrupting others. Daydreaming. Problems multitasking. Feeling so full up with 'stuff' that one more request might send you over the edge. Finding all the everyday stuff others do easily a very real challenge can all be symptoms of food intolerance. Luckily I only had a mild case, so only had problems with procrastination, daydreaming and an upset stomach, but the kid I mentioned had all of those symptoms.

Sorry that people got so upset about what I wrote, but the kid I wrote about had a much improved life after his diet changed, so I thought it might help others to know.

A lot of illnesses have identical symptoms and very often the local GP only looks at the illness that is most wellknown so it can be helpfull to know that another illness might be the cause. I have heard of many parents who don't understand why the ADHD medication didn't help their children.

And seriously, there is no need to attack people for trying to help you.

@Fimofriend

I apologise if you saw my post as an attack. It certainly wasn't meant that way. If your parents' friends' child had all those symptoms and they were caused by a food intolerance, then fair enough. You only mentioned that the child was 'climbing the walls', so that was the only information I had to go on.

Incidentally I remain more than a little sceptical that such symptoms can be caused by a food intolerance, but would love a link or website I could check.

It is perfectly possible to feel distracted/unwell/fed up due to a physical illness. It's fairly unlikely that you'd ONLY have psychological symptoms, especially as a child where in fact psychological symptoms often spill over more into physical symptoms (my tummy hurts/my legs won't sit still).

That's great @Fimofriend, I'll certainly bear that in mind next time I meet anyone only diagnosed and medicated by their local gp.

And in the meantime whenever someone with no experience or knowledge of adhd offers their unwanted and inane 'advice' I'll practice receiving it with more humility.

Oh no, seems I've already forgot that last sentence, must have been the white bread I had at lunch.

“A lot of illnesses have identical symptoms and very often the local GP only looks at the illness that is most wellknown so it can be helpfull to know that another illness might be the cause.”

GPs can’t diagnose ADHD though...

@TrainspottingWelsh That's great @Fimofriend, I'll certainly bear that in mind next time I meet anyone only diagnosed and medicated by their local gp.

And in the meantime whenever someone with no experience or knowledge of adhd offers their unwanted and inane 'advice' I'll practice receiving it with more humility.

Oh no, seems I've already forgot that last sentence, must have been the white bread I had at lunch.

Well said. Fimofioeld I think most of people here have had long enough to work out whether a change of diet would make a difference & have tried out the various supplents, diet types (even inadvertantly).

This is interesting and quite timely for me.

I have a ds (17) with Aspergers and was at Alder Hey with him last year for his yearly appointment and the consultant seemed really fixated on asking me questions.

What happened was he had typed in ds’s details wrong and another child came up. He started asking when ds was diagnosed and I said XX/XX/2011, it was a Monday.

To cut a long story short, he asked me loads of questions and then suggested i see my own GP over the possibility of me having ADHD. I ended up going for several assessments and was diagnosed at the age of 41. It all makes complete sense now.

Just before lockdown it was my dd’s Year 4 parents evening. She is 9. She is excelling in all areas but has problems with concentration, fidgeting, being late, clumsiness and after being with her on a recent residential trip, her teacher agreed that he was slightly concerned too ( I brought it up ) and said he would speak to Senco and start the ball rolling. 2 weeks later we went into lockdown so god knows how long the assessment will take.

I have several members of my close family
who dismiss both mine and ds’s diagnoses which is frustrating and his school were amazing and nothing but supportive, as is his sixth form college. There are people who don’t believe in the condition, I’ve met some. I don’t care anymore what people think. That took a long time to happen!

Sorry for long post.