Being Diagnosed with ADHD (not medical thread)

[Rainmaker]

"you're either Autistic or you're not"
Which is exactly the point being made when I point out the difference between an actual, clinically described disorder, and someone merely using the terms improperly. Those people claiming to be "a bit OCD" about something very defininitely do NOT have Obssessive Compulsive Disorder.
You say I'm ableist, but I'm not sure you realise I'm deliberately targeting people who claim to have Autistic Spectrum Disorder, when they clearly have not even the slightest difficulty with their lives and would never be diagnosed thus by any medical professional. Same for those who claim to be dyslexic, rather than just being slower readers or academically lazy.

In short, a casual misuse and abuse of terminology* by people who haven't the first clue about what actually constitutes a mental disorder, often as an excuse for their poor behaviour, and doing a great injustice to those who actually do have such a disorder.


*"On the spectrum" being a typical example of such misuse. This time take note of the very intentional quotation marks. I used them for just such a reason.

Having better explained yourself, I understand on a re-read where you came from. I also apologise for grabbing the wrong end of the stick. This part however,

Most people are "on the spectrum", but they're just mildly deviant from average social norms. They don't have an actual disorder.

to be fair, was ambiguous and did place the opposing slant on much of the rest of your post. Your clarification makes sense, and I agree with you. As someone who does have a formal diagnosis, I spend my life being quietly infuriated by throwaway comments about 'not looking Autistic' or reassured that 'everyone's on the spectrum to some degree'... As you say, the debilitating reality of a disorder that rules and shapes your entire life, and the self diagnosed Face-agram 'Autism mom' lifestyle are very different beasts.

 

[ttaskmaster]

Having better explained yourself, I understand on a re-read where you came from. I also apologise for grabbing the wrong end of the stick. This part however,

to be fair, was ambiguous and did place the opposing slant on much of the rest of your post. Your clarification makes sense, and I agree with you. As someone who does have a formal diagnosis, I spend my life being quietly infuriated by throwaway comments about 'not looking Autistic' or reassured that 'everyone's on the spectrum to some degree'... As you say, the debilitating reality of a disorder that rules and shapes your entire life, and the self diagnosed Face-agram 'Autism mom' lifestyle are very different beasts.

Having seen "on the spectrum" bandied about as an insult on this very forum, I'm quite keen on calling people out for such misuse.
Being "on the spectrum" is intended to mean that one exhibits some of the signature traits, with the obvious inference that they're mentally deficient and thus deserving of derision, when in truth it's just a introverted personality quirk and the person misusing the term is being a bell-end.

 

[Lysander]

Having recently been diagnosed with OCD I do get a little more annoyed when people say, "lolllll I'm a bit OCD like that lolll". Just makes them look like an idiot really.

 

[LuckyBenski]

Being "on the spectrum" is intended to mean that one exhibits some of the signature traits, with the obvious inference that they're mentally deficient and thus deserving of derision

I don't agree TBH and I think that's sort of the problem. Saying on the spectrum doesn't mean that and lots of people don't mean that when they say it. I do agree it's used inappropriately or downright inaccurately.

 

[tres]

Apparently, getting a diagnosis for an adult through the NHS currently takes about 3 years, so in for a penny, in for a pound, we are thinking about paying for a private diagnosis
However, just looking for a diagnosis outside the NHS seems to put you on a pathway where it's in the companies' interest to diagnose what you think you have, and offer paid-for therapy/solutions
We are also concerned that getting a positive diagnosis outside the NHS will carry no weight within the NHS

Up to 4 years in some areas!
You're right - paying for a diagnosis leads to a higher percentage of diagnoses. ADHD meds can be > £200 a month if bought privately.

However, a private diagnosis will carry some weight in the NHS. It won't, however, be taken as gospel and meds just prescribed on the NHS. It'll be appropriately taken into account before care is taken over by your local affective disorder team.

It can be a quicker way of getting it all sorted though - private diagnosis then GP to refer to affective disorder team.

Source: mental health doctor that diagnoses ADHD

 

[dowie]

I often wonder if some conditions are exaggerated to simply make people feel better about having a personality quirk. We all have different traits, some negative some positive. Some present themselves more frequently or with greater magnitude at certain times in our lives.
If a label is put on something then you know, other people are the same as me and that's good. It also gives some people an excuse for their failings and removes the need to them to take responsibility, it's easier to blame xyz.

There probably is some of that, you see it on social media with the "actually autistic" types for example, when in reality there is a heck of a big difference between what they have to deal with (the high functioning or aspie types) and what severely autistic people have to deal with.

They seem to get quite militant re: academics conducting autism research or indeed with some autism organisations - parents struggling with severely autistic kids who are looking for treatments/cures etc.. are seemingly hated by some of these high functioning autistic campaigners who see their diagnosis as a quirky part of their identity.

Language is another thing that gets people kicking off - whether you refer to someone as an autistic person or someone with autism. You don't really see that with physical conditions so much - does anyone really care to split hairs over whether they've got asthma or whether they're an asthmatic, or whether they have type 2 diabetes or they're diabetic... but with all these activist types and mental health labels being proudly claimed for extra woke points then it becomes a hotly contested thing.

It might as well be a different condition in some cases, the vocal activist types have little in common with severely autistic people (who can often be non-verbal for a start) other than sharing the same label... it's on a spectrum after all. SSC had a good article on this:

Against Against Autism Cures

[Content warning: autism, disability, psychiatry, abuse] I. Vox: We’ve called autism a disease for decades. We were wrong. I have mixed feelings about this. On the one hand, I know and like m…

slatestarcodex.com

All psychiatric categories are a mishmash of unlike things crammed together under a single name. Depression ranges from people who put on a normal facade but feel empty inside, all the way to people who are totally catatonic and can’t move or speak. Schizophrenia ranges from people who are totally okay as long as they take their medication, all the way to people who talk in “word salad” because their thoughts are so malformed that they can’t even make complete sentences. But even among diagnoses like these, autism takes the cake in terms of heterogeneity.

I kind of a have a front-row seat here. On the one hand, about half my friends, my girlfriend, and my ex-girlfriend all identify as autistic. For that matter, people keep trying to tell me I’m autistic. When people say “autistic” in cases like this, they mean “introverted, likes math and trains, some unusual sensory sensitivities, and makes cute hand movements when they get excited.”

On the other hand, I work as a psychiatrist and some of my patients are autistic. Many of these patients are nonverbal. Many of them are violent. Many of them scream all the time. Some of them seem to live their entire lives as one big effort to kill or maim themselves which is constantly being thwarted by their caretakers and doctors. I particularly remember one patient who was so desperate to scratch her own face – not in a ‘scratch an itch’ way, but in a ‘I hate myself and want to die’ way – that she had to be kept constantly restrained, and each attempt to take her out of restraints for something as basic as going to the bathroom ended with her attacking the nurse involved. This was one of the worse patients, but by no means unique. A year or so ago, after a particularly bad week when two different nurses had to go to the emergency room, the charge nurse told me in no uncertain terms that the nursing staff was burned out and I was banned from accepting any more autistic patients. This is a nurse who treats homicidal psychopaths and severely psychotic people every day with a smile on her face. When she says “autistic”, it seems worlds apart from the “autistic” that means “good at math and makes cute hand flap motions”. When a mental health professional says “autistic”, the image that comes to mind is someone restrained in a hospital bed, screaming.

Also re: ADHD (this guy is in the Bay Area surrounded by techies and finance guys so must get an absolute **** load of Adderall requests), I guess if you're trying to be uber competitive in finance or at a FAANG company and you've not blagged yourself an ADHD diagnosis then are you really trying hard enough?

Adderall Risks: Much More Than You Wanted To Know

[Previously in series: Antidepressant Pharmacogenomics: Much More Than You Wanted To Know; SSRIs: Much More Than You Wanted To Know, etc. This is all preliminary and you should not take it as a rea…

slatestarcodex.com

Psychiatric guidelines are very clear on this point: only give Adderall to people who “genuinely” “have” “ADHD”.

But “ability to concentrate” is a normally distributed trait, like IQ. We draw a line at some point on the far left of the bell curve and tell the people on the far side that they’ve “got” “the disease” of “ADHD”. This isn’t just me saying this. It’s the neurostructural literature, the the genetics literature, a bunch of other studies, and the the Consensus Conference On ADHD. This doesn’t mean ADHD is “just laziness” or “isn’t biological” – of course it’s biological! Height is biological! But that doesn’t mean the world is divided into two natural categories of “healthy people” and “people who have Height Deficiency Syndrome“. Attention is the same way. Some people really do have poor concentration, they suffer a lot from it, and it’s not their fault. They just don’t form a discrete population.

[...]
I cannot tell you how much literature there is trying to convince you that Adderall will not help healthy people, nor how consistently college students disprove every word of it every finals season.

That makes “only give Adderall to people with ADHD” a moral judgment, not a medical one. Adderall doesn’t “cure” the “disease” of ADHD, at least not in the same way penicillin cures syphilis. Adderall will give everyone better concentration, and we’ve judged that it’s okay for people with terrible concentration to use it to overcome their handicap, but not okay for people with already-fine concentration to use it to become superhuman.

 

[Noxia]

Got diagnosed yesterday, took 30m. Now have a hat trick, ASD, ADHD and Dyscalcula. Explains a lot, doesn't bother me I didn't find out in early life as it shows my resilience and how well I've done playing on hard mode.
My advice would be if you suspect it go for it, don't be one of those people who say they have something when they haven't even been assessed.
Can relate to most the stories here. I am completely open about any of it so if anyone has any questions I'll answer them no matter the topic.

I had reasons for getting each one assessed and have benefitted from it.

@dowie sorry but I have to respectfully call this out. Categorising a spectrum into more or less severe is totally disingenuous to people who suffer with ASD. What you perceive to be greater or lesser struggles makes no difference. It's the individuals who experience the struggles every day, you have to live it to understand. It is exactly those perceptions that lead to inequality in the work place and life in general, It is the very definition of discrimination having bias because you believe someone to be more disabled than someone else.
I asked if dyscalcula was split into severe or mild and it is not for this very reason.
As an aside, I recognise that I am perhaps at an advantage over others on the spectrum so to remedy this I champion diversion and inclusivity at work. Not to make life better for myself but to help those less fortunate because some of these people do not have a voice literally as you said. It's not about trying to get an advantage. It's about trying to level the playing field as best we can. No matter where someone is on the spectrum, they have their own unique strengths.

 

[Pipe & Slippers]

Up to 4 years in some areas!
You're right - paying for a diagnosis leads to a higher percentage of diagnoses. ADHD meds can be > £200 a month if bought privately.

However, a private diagnosis will carry some weight in the NHS. It won't, however, be taken as gospel and meds just prescribed on the NHS. It'll be appropriately taken into account before care is taken over by your local affective disorder team.

It can be a quicker way of getting it all sorted though - private diagnosis then GP to refer to affective disorder team.

Source: mental health doctor that diagnoses ADHD

Very useful - TVM

 

[dowie]

@dowie sorry but I have to respectfully call this out. Categorising a spectrum into more or less severe is totally disingenuous to people who suffer with ASD. What you perceive to be greater or lesser struggles makes no difference. It's the individuals who experience the struggles every day, you have to live it to understand.

That's kinda logically flawed, if you believe you have to live it then how can you argue it either way as you only have your own experience, you're presumably not locked away in an institution trying to eat your own fingers? You don't violently attack nurses right? Do you really need to live as someone like that for it to be apparent that they're rather different to someone high functioning. I don't think so and certainly the psychiatrist/expert who writes SSC doesn't. A few years ago Aspergers was a separate thing in the USA now it's lumped in with autism, I don't think the typical aspie has much in common with the autistic people he's talking about vs say other people who don't quite meet the criteria for diagnisis.

I mean take his ADHD argument, some people in this thread are acting like say getting a diagnosis is some really distinct category but really if you draw a line on the normal distribution and have people on the left classed as ADHD then you're inevitably going to have a large group of ADHD people close to the line simply by nature of how people are distributed and they're going to be not too different at all to the people just on the right hand side of the line who didn't quite get classified as having it. In fact they'll be more similar to the not-quite ADHD people than they will be to the people at the far left tail with severe ADHD issues.

Further to that where the line is drawn (so to speak) probably varies a bit, is the person making the decision a Psychiatrist in France or a Psychiatrist in the USA where they have twice the rate of cases?

I mean take his height argument, supposing we decided to have a classification of "height deficiency syndrome" and classify the bottom quartile of men as having it, people like Rishi Sunak and Tom Cruise at 5'7 would fall into the category, though they're close to the borderline and really have much more in common with say the 5'8 men who don't get classified as having height deficiency syndrome than they would with someone at the far left tail like Hasbullah who's basically a 19 year old in a pre-school kid's body

far left of distribution vs close to the boundary

 

[XeNoN89]

My girlfriend wants me to get an official diagnosis as she thinks I'm a bit autistic! I do have some of the traits usually associated with being on the spectrum, and when I take the online tests it says I'm very likely to be. The problem is I don't see the point of getting a diagnosis, what would I benefit from doing that?

 

[dowie]

My girlfriend wants me to get an official diagnosis as she thinks I'm a bit autistic! I do have some of the traits usually associated with being on the spectrum, and when I take the online tests it says I'm very likely to be. The problem is I don't see the point of getting a diagnosis, what would I benefit from doing that?

Indeed, I'd have the same question I might well be a bit autistic too. Does she expect you to then shell out for regular sessions with say a psychologist too or a qualified therapist?

I can certainly see the utility in adults getting a diagnosis if they're seeking treatment - like an ADHD diagnosis obvs is necessary to get medication, is there much utility in an autism diagnosis if you're an adult especially if it's mild - bit of an introvert, likes trains etc...

The SSC guy seems to have people in his life who have told him he's maybe autistic yet he's a qualified psychiatrist and doesn't seem too fussed about it.

 

[Noxia]

Indeed, I'd have the same question I might well be a bit autistic too. Does she expect you to then shell out for regular sessions with say a psychologist too or a qualified therapist?

I can certainly see the utility in adults getting a diagnosis if they're seeking treatment - like an ADHD diagnosis obvs is necessary to get medication, is there much utility in an autism diagnosis if you're an adult especially if it's mild - bit of an introvert, likes trains etc...

The SSC guy seems to have people in his life who have told him he's maybe autistic yet he's a qualified psychiatrist and doesn't seem too fussed about it.

Just responding to this one as it's shorter first. There is absolutely utility outside of 'treatment' of which there isn't any for ASD, my work would make (and any employer expected) to make reasonable adjustments because of an official diagnosis. This can include things like, having access to interview questions 30m before it starts, having a set desk in jobs that require desk share etc etc.
The other advantage I have found is it stopped arguments with my partner, no longer at weddings would I get 'told off' for wondering off to be alone and appearing anti social, now we knew the reason. There is a very specific criteria for getting diagnosed, it's not just picking a few traits off a list and saying oh yes sometimes I don't like being sociable, I might be a little bit on the spectrum.
It's interesting seeing your perspective from someone I believe to not have any diagnosed conditions. You cannot be 'a bit' autistic, you either are or you aren't, as said, having a few traits does not mean you are and part of the reason for these insane NHS wait times are idiots on Tiktok spreading disinformation. My sister showed me one of a girl saying folding your wrist under your chin was a sign, 2 million views...

I agree with your point that some people are keen for 'labels' I'm not bothered, I just find that finding out the reasons for why I am like I am is interesting. Another example, my math skills are totally out of kilter with the rest of my profile, I had the dyscalculia assessment and now I know why, I personally don't like to be left wondering. Because of this I now get extra time in my exams so that serves some utility as I'm sure you can see.

Out if interest, and obviously you wont share if you don't want to, what is your stake in this race?

 

[ttaskmaster]

I don't agree TBH and I think that's sort of the problem. Saying on the spectrum doesn't mean that and lots of people don't mean that when they say it. I do agree it's used inappropriately or downright inaccurately.

Lots of people don't mean that... but lots of other people do.

The one that sticks in my head from this forum was a poster offering an opinion on something, and the response as best as I can recall was something like, "Why would you think that? Are you on the spectrum, or something?". There have been others along similar lines that I've noticed.
But I'm noticing more people in general using "on the spectrum" and "autistic" to specifically deride and derogate someone who clearly is neither.

Categorising a spectrum into more or less severe is totally disingenuous to people who suffer with ASD. What you perceive to be greater or lesser struggles makes no difference. It's the individuals who experience the struggles every day, you have to live it to understand. It is exactly those perceptions that lead to inequality in the work place and life in general, It is the very definition of discrimination having bias because you believe someone to be more disabled than someone else.

The categorisation of how severely someone is affected by an affliction is one of the fundamental elements of diagnosis, though. Not just ASD but pretty much everything, both mental health and physical health conditions.
The very clinical definition of a disorder is that it puts you beneath a set threshold for ability to cope with basic life tasks (ie, you are disordered), but that it is also a range or spectrum of severity, without the more specific and precise categorisation of a disease. This is why arthritis itself is a disease, but also part of the autoimmune disorder spectrum.

 

[Ayahuasca]

I've heard the use of "on the spectrum" quite often, even in the work environment and people think nothing of it. There's a rather popular comedian who hosts a podcast and I've heard him say things like "A brush with that tism". It seems to get flung at anyone who doesn't abide by all of the social norms.

 

[dowie]

The other advantage I have found is it stopped arguments with my partner, no longer at weddings would I get 'told off' for wondering off to be alone and appearing anti social, now we knew the reason.

That's kinda using it as a crux tbh. though I agree the work thing sounds useful.

You cannot be 'a bit' autistic, you either are or you aren't,

That's very clearly false, there are obviously people it affects to a different extent and some fuzziness on where to draw lines when classifying it etc.. Take Aspergers for example, that was a diagnosis in the US previously now it's not, it's been merged into ASD. I'll take the word of the Psychiatrist who writes SSC, backs his claims with evidence and deals with (serious) autistic cases all the time over someone else who simply has an autism diagnosis.

I should add I'm aware it's not just a one-dimensional thing too, there are various factors involved, that don't negate distribution issues (perhaps that does makes it harder for less numerate people to conceptualise them) and that there are obviously some very severe cases and also lots of borderline ones more similar to people who fall just outside the classification.

Out if interest, and obviously you wont share if you don't want to, what is your stake in this race?

I don't understand your question.

 

[Noxia]

@ttaskmaster You are correct, I did not articulate what I was trying to get across in that post. I (think) I was trying to say that 'whataboutism' doesn't have any merit when comparing the struggles of people with neurodivergent conditions.
There is a reason people spend years learning these topics in order to formally diagnose someone, arm chair psychologists are not helpful in anyway and by some of the replies in here, it seems some see getting diagnosed as a zero sum game and an excuse to act certain ways.
It is important that people do not use a diagnosis as further confirmation to their selves of what they perceive to be failings, but rather use it as an explanation for why they struggle to manage with some aspects of life. Perhaps recognise they are able to address some of these difficulties, and move towards a life in which they are more fulfilled.

That's kinda using it as a crux tbh. though I agree the work thing sounds useful.

Do you mean using it as a crutch? I don't understand how crux fits in here, may be my comprehension., if so this is exactly what I mean by people perceiving diagnosis as some zero sum game. Perfect example, classic discrimination. I hope you don't bring this into your place of work

That's very clearly false, there are obviously people it affects to a different extent and some fuzziness on where to draw lines when classifying it etc.. Take Aspergers for example, that was a diagnosis in the US previously now it's not, it's been merged into ASD. I'll take the word of the Psychiatrist who writes SSC, backs his claims with evidence and deals with (serious) autistic cases all the time over someone else who simply has an autism diagnosis.


I don't understand your question.

I am asking the source of your interest in this topic, apologies if I am wrong but I am assuming you are neuro typical which is why I am perplexed to your attitude towards issues that do not affect you. Sorry if you do, I don't spend much time in GD.

The point is you (nor me) are not in a position to deem what is more serious or not, I as a white person would not be telling someone who has suffered racial discrimination to just get on with it because a different racial group has it worse. This is what I'm getting from your posts anyway.

Also thank you for keeping it civil, dialogue is important.

 

[Noxia]

That's kinda using it as a crux tbh. though I agree the work thing sounds useful.

. Do you mean using it as a crutch? I don't understand how cruz fits in here, may be my comprehension., if so this is exactly what I mean by people perceiving diagnosis as some zero sum game. Perfect example, classic discrimination. I hope you don't bring this into your place of work

That's very clearly false, there are obviously people it affects to a different extent and some fuzziness on where to draw lines when classifying it etc.. Take Aspergers for example, that was a diagnosis in the US previously now it's not, it's been merged into ASD. I'll take the word of the Psychiatrist who writes SSC, backs his claims with evidence and deals with (serious) autistic cases all the time over someone else who simply has an autism diagnosis.


I don't understand your question.

I am asking the source of your interest in this topic, apologies if I am wrong but I am assuming you are neuro typical which is why I am perplexed to your attitude towards issues that do not affect you. Sorry if you do, I don't spend much time in GD.

The point is you (nor me) are not in a position to deem what is serious or not, I as a white person would not be telling someone who has suffered racial discrimination to just get on with it because a different racial group has it worse. This is what I'm getting from your posts anyway.

Also thank you for keeping it civil, dialogue is important.

Oh re an older post of yours, I am not surprised US rates of anything are higher considering their attitude to medical care and profit. When I was over there in April even the tv adverts were advertising anti depressants etc, crazy.

 

[dowie]

. Do you mean using it as a crutch? I don't understand how cruz fits in here

Yup, I'm probs a bit dyslexic too tbh...

I am asking the source of your interest in this topic, apologies if I am wrong but I am assuming you are neuro typical which is why I am perplexed to your attitude towards issues that do not affect you.

I was just interested in the topic, I'd not necessarily assume that, as I said to the other poster who was considering a test I might be a bit autistic too it's not something I've had tested, I certainly wouldn't be surprised if I had ADHD either.

 

[Noxia]

Yup, I'm probs a bit dyslexic too tbh...



I was just interested in the topic, I'd not necessarily assume that, as I said to the other poster who was considering a test I might be a bit autistic too it's not something I've had tested, I certainly wouldn't be surprised if I had ADHD either.

Thing is I have been guilty as to what I have rightly or wrongly thought you were alluding too. Whenever someone on TV starts talking about how what I perceive to be a minor inconvenience is affecting their mental health I find myself rolling my eyes. I have no doubt some absolutely do take advantage of conditions to act out, oh sorry I offended you, I have aspergers so I dont understand why that's offensive etc. I have jokingly called my diagnosis my 'get out of jail free card', knowing full well that if I was that way inclined I could leverage it. Therefore I do understand why people may be .... <a word> when it comes to dealing with people like me, eg; "oh look, Noxia is being a dick again, no doubt get away with it as he has XYX"

 

[fez]

Thing is I have been guilty as to what I have rightly or wrongly thought you were alluding too. Whenever someone on TV starts talking about how what I perceive to be a minor inconvenience is affecting their mental health I find myself rolling my eyes. I have no doubt some absolutely do take advantage of conditions to act out, oh sorry I offended you, I have aspergers so I dont understand why that's offensive etc. I have jokingly called my diagnosis my 'get out of jail free card', knowing full well that if I was that way inclined I could leverage it. Therefore I do understand why people may be .... <a word> when it comes to dealing with people like me, eg; "oh look, Noxia is being a dick again, no doubt get away with it as he has XYX"

How does that work? You can't judge others based on your spectrum of impairment or hardship and then roll your eyes when someone else claims to struggle with something you perceive to be silly. Everything is relative. Most people in the first world are insanely soft compared to a lot of the world and things that wouldn't even register on their emotional wellbeing or functionality are show stoppers here.

There is no right answer to this but people do use diagnosis's to avoid things they don't want to do. In the same way that some black people play the race card at the first hint of not getting their way. Most don't but some do. I also don't think it's healthy to indulge people completely simply because something is not easy for them.

All my life I have been quite anti-social. Christmas leaves me exhausted and if I spend too much time without socialising I go a bit weird and get nervous about it. That doesn't mean I can just avoid the issues. It just means that sometimes I have to do stuff I really don't want to do and sometimes I have to force myself to do things because in the long run its short term pain to avoid long term suffering.

Thats why I don't like the idea that we diagnose so many people with conditions that are not black and white and often feel like the easy way out. There is no right answer to this but the anti-depressant epidemic is a prime example of taking the easy way out of a problem.

Also (not related to you) saying someone is on the spectrum isn't insulting, its just a common phrase now for people who aren't normal in some aspect of their personality. One of my good friends is very much on the spectrum but he is highly functioning, very intelligent and gets on well in social situations but there are definitely traits which put him on the spectrum.

As with all these things, we have no idea what you are like and what the ultimately reality is. We can only speak from our own lives and experiences. This post isn't a judgement on you or your diagnosis in any way, its simply my view on this area.