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Post by fuzzywuzzy on Jul 9, 2013 22:28:02 GMT
This just had to be done......just keep encountering so many ridiculous opinions from so-called experts......as well as well-meaning if we're being polite or downright ignorant if we're not penny's worth from others.....can't wait to hear yours too.... today from social worker:- "of course, ADHD is over-diagnosed in children" - resisted temptation to enquire what the current number should be....and whether she was basing her knowledge on brain scans, without which, of course, no-one could say whether the rate was one in every 3 million or like cancer, 1 in 3. I have no doubt that there are some children misdiagnosed and wrongly diagnosed but I am also quite sure that there are many, many that go undiagnosed "it comes over from the U.S.". - oh no, hope I don't catch it then.....where, of course, they are light years ahead of us "have you tried alarms?" - no that really never occurred to me.....oh yes, discounted that when I realised that I would either need an alarm to remind me to set alarms....or I could well end up with an alarm going off every single second "we don't like to diagnose with labels anymore" - oh I see is that to aid the government cuts by denying people disability benefits.....and if I am unlucky enough (touch wood) to have it, will I now have division and spread of abnormal cells as opposed to cancer "It's not about drugs, it's about learning to manage your life" - please tell that to the person with epilepsy my all time favourite still remains from the Maudsley not-so-specialist bipolar team....."you do realise that it's a serious mental illness?" - look, if that's the case, you know what I've changed my mind, I don't want it after all over to you lot....... P.s. I know that I will be updating this thread continuously because 1. I've got ADHD and it's sooooo amusing that I shall end up hyperfocussing on it and 2. They just give you sooooo much darned ammunition!!
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Post by markingreenwich on Jul 9, 2013 23:31:20 GMT
As a trainee teacher with comorbid adhd and autism you would be sick to hear how many SENCOs have told my cohort that Dx for both are 'given out like smarties' 'given out like sweets'. its shocking. I rinse them for it, don't worry =)
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Post by fuzzywuzzy on Jul 9, 2013 23:54:32 GMT
Delighted that you do.....sadly not shocked
ooh, some more.....
my friend has a 4 year old son diagnosed with autism.....she was looking round prospective schools and was enquiring as to their policies on children with autism.....one reply was "oh, yes we have one of those"
someone I met at a bipolar support group told her doctor that she thought she had manic depression....to which he replied, "oh, you don't want that"
My GP told me he had probably missed 100's of cases of bipolar disorder.....let's hope they weren't feeling suicidal or believing they can fly then
he also told me "we're all a bit bipolar" - no, I think you'll find that 'we're' mostly not at ALL like bipolar
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Post by fuzzywuzzy on Jul 10, 2013 2:16:57 GMT
Just wanted to add to Mark's post that most of my friends who have children with ADHD deliberated for 3 hard, long years before deciding to try medication..........and frequently it had taken up to 3 long, arduous years to even get to that diagnosis but if they are giving out smarties, can I have some please
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Post by fuzzywuzzy on Jul 10, 2013 3:39:13 GMT
Ooh, I knew this was a bad idea.....haven't been able to sleep.....as all the examples keep bouncing around my brain that social worker from the community mental health team said that they had someone with adult ADHD who came into the centre.....and you could 'see' that he had it
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Post by fuzzywuzzy on Jul 10, 2013 7:01:08 GMT
I realise I'm talking to myself here, but that's ok.....I've long come to terms with my madness . It's not my fault my family haven't.....just have to give them more time to catch up......normal brains can be soooo slow the social worker told me that people with bipolar disorder have wildly different symptoms, are completely different and it's really mostly to do with personality traits anyway..... well, I have been in rooms-full of people with bipolar disorder in all different geographical areas and the people are of all different ages and save for differences in occurrence, length and severity to a T they all have exactly the same symptoms....and many believe that they were BORN with it! Petra is fast becoming a leading expert in ADHD..... and I am fast becoming very knowledgable about bipolar disorder..... Petra me thinks we should set up shop .....not sure who would be in charge of prompting, reminding, planning, organisation, keeping on track.....and so on....and so forth.... With extraordinarily talented star turns from Janev, Michael, JJ, Dizzydee and Gremico and Annie and..Kathymel.....and......Lesley and brainfog....and Simon.....and.....and ......and please just add your name too.....we are ALL experts through experience.....far more so than most, though not all, of the people we come into contact with
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Post by jan on Jul 10, 2013 8:16:14 GMT
can't help having the hump that you think petra's more of an expert on adhd than me - or is that the grandiosity symtom of my bipolar talking anyway listen to this for shit talked by a professional - i challenge anyone to beat this one my daughter was being prescribed melatonin from the physc that diagnosed her and was still treating her (for about 2 years at the time) had also been prescribing concerta . it became a problem as her doctors was in a different borough to where we lived and all of sudden physc said would have to get the prescription from doctor as pct were not happy that the cost was falling on them. doctor refused as she was under 18 and also wanted written confirmation that she had adhd. physc said couldn't write to him with a written diagnosis as she didn't know if my daughter actually had adhd ??!!!!!!!!!!
another week we were in her office and she said 'i always know the kids that have adhd as they can't resist playing with the string on the blinds' ? (which my daughter was doing at the time.
all those years of training worth it then
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Post by fuzzywuzzy on Jul 10, 2013 10:07:16 GMT
That does it then, you, me and everyone else are clearly ably and amply qualified Oh boy, Jan.....thoughts keep returning to that gun!
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Post by fuzzywuzzy on Jul 10, 2013 15:15:06 GMT
Ha ha....remember a thread on which Petra mentioned that she hadn't yet managed to meet a medical 'professional' who knew as much as her about ADHD I can definitely identify with that regarding bipolar disorder.....I feel like a leading expert, in this country at least....not difficult...no, not me being grandiose....would be funny if it wasn't so nearly true.....I was taken on as a research guinea pig by one of the Universities....they are world leaders in knowledge and research into bipolar disorder.....their opinion of the bipolar 'experts' at the place beginning with M, who diagnosed me but seemed to do so begrudgingly......'idiots'....can't tell you how great it felt to be vindicated.....one down, one to go..... Wonder if I could smuggle you in.....two for one offer?
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Deleted
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Post by Deleted on Jul 10, 2013 16:24:29 GMT
Am flattered to be considered an up and coming 'leading expert' on adhd. However, I cannot possibly take this honour. I think you will find janev to be far more experienced with far greater extremes of behavior and therefore knowledge of adhd than me
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Post by jan on Jul 10, 2013 22:10:26 GMT
Jan....even in the most terribly frustrating adversity.....you have the most amazing sense of humour! thank you FW - very kind - not that it gets me any where in life in general - now this is what i call really funny - Jul 10, 2013 17:24:29 GMT 1petra said:. I think you will find janev to be far more experienced with far greater extremes of behavior - - - -than me - -
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Post by marjoleine on Jul 11, 2013 16:27:08 GMT
'can't you just get up a bit earlier to get to work on time?' no, i allready plan in an hour and half + some extra time. any other bright idea's?
'you dont have add, because i cant see it in your daily life!' yeah well, you claim to be normal... thats not really showing either.
'you say you have add, well i think add is just a made up hoax..for people who need excuses and.. blah blah, so what do you think..?' im sorry, i zoned of there for a second.. what was that you where saying?
:-D
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mdza
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Post by mdza on Jul 14, 2013 14:33:13 GMT
The general ignorance is still the hardest part to deal with. It has taken me the best part of 15 years to finally work out what is wrong with me due to being almost impossible to find people the are actually understanding of mental health or at the very least objective in trying to diagnose it.
For me it has constantly felt as a disable person trying to fix myself whilst being constantly treated like a crazy person or a fool. I guess because that is exactly what it has been.
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Post by fuzzywuzzy on Jul 14, 2013 15:55:22 GMT
Hi there, you're right......we've been looking at the sometimes funny angle of it.....we've had to.....it's kept us going.. and, of course, we have great sense of humour but these people go into these professions to help people....psychologists, GPs, social workers....yet, whilst they continue to have little/no/wrong or appalling knowledge of what are actually highly treatable brain disorders IF ONLY THEY WERE CAUGHT EARLY......they are literally messing with people's lives.....undiagnosed, misdiagnosed and given completely inappropriate or outright dangerous medication.....never given OPTIMUM treatment..... and yes, then we are very much treated as idiots or crazy because we are intelligent enough to self-diagnose....intelligence and perceptiveness being others of our strongpoints....even though we're a bit slow....and it might have taken years for us to figure it all out Many of us on here feel very strongly about it but what can we do? As JJ said we try to pave the way for better understanding with our children who are afflicted, but how can you change a whole profession which knows next to nothing....I wish all these different groups, charities etc would all collaborate and really be a force for change One thing that annoys me very much and I know that it isn't the whole answer to diagnosis but when I hear that it is expensive to have scans.....well, actually, I think it's quite important to be scanned for something that can be so debilitating even when identified and treated, let alone if left to chance...again as JJ said, a life that's been like wading uphill through porridge....when will this be taken seriously
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mdza
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Post by mdza on Jul 14, 2013 23:31:24 GMT
I'm just really bitter and angry at the moment, truth is what has kept me going all these years has been my ability to find humour in it all. I look at my life in third person and it plays like one big episode of Mr. Bean.
What can we do? Be patient and understanding of others inability to understand and do our best to teach/coach/train people as we go along, and try to stop those who are wreaking havoc on others if possible.
Easier said than done unfortunately.
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Post by grim on Jul 15, 2013 12:37:46 GMT
Last year we (me,wife,and 13 year old lad) were sat in the deputy headmaster's office of the lads school to discuss how his education could move forward....
Deputy Headmaster leads in with "listen...i'm from Yorkshire and i think ADHD is rubbish!"
Now,my father and grandfather are/were both born and bred yorkshiremen,and i spent a good part of my formative years in North Yorkshire.
Also
I have ADHD,two of my boys are diagnosed with it,and my oldest lad almost certainly has it as well.(and,anecdotally,it would appear my grandfather may have as well)
I could've reacted better i s'pose,and my wife did a great job of bundling me out of the office before i made things worse...and needless to say,my boy does not attend that school anymore...and the deputy moron was duly reported to the board of governors.
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Post by mighty on Jul 16, 2013 1:48:59 GMT
Haven't read the rest of the thread but genuinely don't see a big problem with many of the things said in the first post. Adhd IS somewhat over-diagnosed in children, especially in the states, where the healthcare system is a lot more linked to the pharmaceutical industry. The USA is influential.. so yeah, diagnosis trends naturally spread. And I think it's a good idea that mental health issues aren't labelled as such, but could talk for ages about why!
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Post by fuzzywuzzy on Jul 16, 2013 7:12:42 GMT
Mighty....
are you diagnosed?
are you medicated?
if you have been diagnosed and you have received medication that is 80% corrective towards your brain dysfunction and you are now able to maximise new procedures to manage your life then that is fantastic
without that label, others are suffering....more than that, many have gone through life as if they were blind and not given a guide dog so they've been stumbling about all over the place.....worse still they weren't given a white stick so no one even knew that they were so disabled, including themselves
without that label they cannot get proper help at school and fail academically
without that help they don't get extra money for things like seamless socks, safety reigns, special aids for writing etc etc
I am having to fight to get a label for my daughter....albeit a different one....when we do eventually receive it, the medication will actually PROTECT her brain, but thanks for your less than informed input
perhaps you would like to share your medical qualifications with us so as to explain your knowledge regarding the over diagnosis of ADHD?
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Post by Kathymel on Jul 16, 2013 10:18:50 GMT
If I don't have a label, I don't get help. End of.
ADHD may be over-diagnosed in the US, but that certainly does not apply to this country yet.
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Post by marjoleine on Jul 16, 2013 12:35:58 GMT
i think its good to be carefull and aware when you get a child or adult diagnosed. unfortunatly lots of people overreact when a child is 'a bit active' or 'a bit dreamy' and go straight to the docs. thats unfortunate, because it makes it harder for the ones who do have ad(h)d to get propper help. i also think that propper help can make a huge differance in life. i know i walked around with ADD and a form of dyslexia, both where never discovered in preschool or highschool but they made me feel very supid and dumb and vulnerable and an outcast. haveing both labels means that i 'get it' now. i get why i am the way i am and i can deal with it. used meds for a year (concerta), then stopped. havent used it since and still been doing quite well. just by 'getting myself' more and giving myself a break every now and than haha. that would have been hard to do, was i never diagnosed.
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Post by fuzzywuzzy on Jul 16, 2013 12:47:19 GMT
As I said previously, I don't know ANYONE who hasn't had to fight every step of the way towards diagnosis.....and treatment.....usually it's taken blood, sweat, tears, pain, unbelievable stress and marriage break ups......and IMPORTANTLY YEARS......YEARS....during which the child is not receiving the help that they should.....and we are the clued up determined parents....usually because we realise just how let down our generation were......I feel desperately sorry for the ones who don't have the wherewithal or stamina
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Post by JJ on Jul 16, 2013 22:40:46 GMT
Haven't read the rest of the thread but genuinely don't see a big problem with many of the things said in the first post. Adhd IS somewhat over-diagnosed in children, especially in the states, where the healthcare system is a lot more linked to the pharmaceutical industry. The USA is influential.. so yeah, diagnosis trends naturally spread. And I think it's a good idea that mental health issues aren't labelled as such, but could talk for ages about why! Labels are only bad when they're used by uneducated or bigoted people to suppress, judge or limit opportunities. Otherwise they're a useful shorthand to describe a common set of disabling symptoms and allow effective treatment and accommodations for the individual so as to reduce the disadvantage caused... As adhd is a condition exhibiting the extremes (in number, frequency and severity) of 'normal' human behaviours, any diagnostic tool is necessarily arbitrary with respect to a cut off point that is then termed disabling. Therefore over or under diagnosis can always be up for debate. Therefore one can compare USA figures with those of Europe and have a discussion - but there's no definitive right or wrong answer, just a consensus compromise.... What's not up for debate though is that we live in a western world society that places particular demands on us, to which our brains are fundamentally unsuited, and puts us at a debilitating disadvantage. There's just the one life we have and the adhd life is incredibly difficult in so many ways and causes so much suffering. These disadvantages can be helped by medication and accommodations. In the 21st century western world, it is right that there are/should be systems in place that strive to promote equality of opportunity. We can only achieve and measure this with appropriate diagnosis and help - and labels are part of this process.... Which brings me back to the original point - and see first sentence onwards....
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mdza
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Post by mdza on Jul 17, 2013 14:22:41 GMT
"And I think it's a good idea that mental health issues aren't labelled as such, but could talk for ages about why!"
This is a tough love mentality and I assure you it causes way more harm than it is meant to solve.
Your point of view indicates that you feel labels keep sick (or people that think they are sick) people in their current state for longer. Well, it doesn't... As it has been pointed out several times already not having that official diagnosis means a world of hurt for us afflicted with disorders. A world where we are not heard from professionals, employers, friends and family. Where our nightmare continues every hour of every day until all you want is for a way out to make it stop.
I personally invite you to review your value system. I'm quite sure that you mean well, yet the reality is it doesn't and probably spills to other areas of your life.
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Post by mighty on Jul 17, 2013 16:54:33 GMT
I value all your wonderful opinions, and I'll try to explain what I meant but am not feeling so eloquent right now - I'll try my best though!
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Andy12345onceIcaughtafishalive
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Post by Andy12345onceIcaughtafishalive on Jul 21, 2013 16:47:10 GMT
Don't worry, just wait for world war 3, it's only around the corner, with any luck
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Post by fuzzywuzzy on Jul 21, 2013 16:49:04 GMT
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Post by fuzzywuzzy on Jul 21, 2013 16:50:05 GMT
D'you think we might get our meds before then?
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Post by JJ on Jul 21, 2013 21:40:47 GMT
D'you think we might get our meds before then? Unlikely, no
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Post by chickster on Jul 25, 2013 20:04:22 GMT
At the moment Im loving counsellors/psychotherapists. They dont like to 'label' people or 'tell them' whats wrong with them. As far as I can tell they think ADHD is irrelevant, as nothing cant be cured by shelling out £60 plus pounds per week every week for 10 years. Ive got a friend who is finishing up her counselling training & she has ZERO interest in whether or not I have ADHD. Neither does my counsellor. I let it p*ss me off but now Im (self) medicated maybe I'll make more headway in therapy who knows? But you soon learn that counsellors have no interest in the biology of the brain, neurotransmitters or mental illness/conditions. I find it extremely ignorant & disrespectful, personally. Taking someones money & not telling them their problems might have a biological cause? Especially since it can make some things worse.
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Post by chickster on Jul 25, 2013 20:14:16 GMT
Oh & to all of those people who dont like labels & diagnoses? Thats you. Not me. KNOWING what was wrong was, on 2 occasions the best thing thats ever happened to me. You cant fight what you dont know & feeling like its just you is the worst thing ever. I dont care if they are well meaning, I just wish they would keep their mouths shut.
Maybe ADHD is over diagnosed in the US, with bored kids who eat rubbish, watch too much telly & dont exercise, but that is NOT the case here, & it does NOT mean ADHD doesnt exist. But we each have to fight our own corner - personally I am no longer willing to talk to stupis people about it, from now on Im keeping quiet. Seriously, on top of all the rest of the rubbish I dont need some half informed 'expert' (or lay person) judging me. At least we can come on here when we need some sanity!
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