View Full Version : How many who self-diagnose later get an official diagnosis?


Eyebrows
01-08-17, 11:05 AM
I am sure that you get many posts asking "Are these symptoms of ADD?" I'm guessing that the answer is largely "Yes, but it could also be symptomatic if something else such as anxiety or depression.

I don't remember any major issues as a child in regards to school-work, I was always able to do well. My report cards would always invariably say I was either too quiet, or that I talked too much. It depended on the class and subject. I remember in primary school I was called 'Hammy' in an affectionate way by one of the teacher's because I was always restless. At uni I got my degree, a 2:1, but never focused in lectures and was able to do well mostly due to it being coursework where I could take my time over it. I did forget things a lot as a child, leaving my PE Kit at school, etc.

I'm 28 and feel that there is *something* up with me and after my last relationship broke up I feel there is something that needs to be done. I feel it's a possibility I might have inattentive ADD and that the anxiety and depression may be symptoms of this.

I always feel overstimulated and overwhelmed by things. I've always had issues with my verbal fluency, following conversations especially when there is more than one going on, finding the right word. I can't put my thoughts into words, I know what I want to say but can't speak them. This happens when I'm not anxious too. I ruled out asperger's because I don't have issues with taking things literally and understand the 'rules' of conversation, just can't do it in practice. On the internet or via text, it's fine. I feel like I don't communicate like others do.

I can't read a book or watch a film for more than 10 minutes, if I do I tune out and I realise I haven't been paying attention. I can barely stick to reading the same page on the internet for more than 30 seconds.

I had major issues in my first job, talking too much, being away from my desk, careless mistakes and had to leave eventually. I got involved with a girl impulsively which ended badly and then this happened again at my current job, though this time more to do with the other party involved.

Mostly I just feel sluggish and slow. I know I'm reasonably intelligent and shouldn't feel as mentally dull or foggy as I do. I often get these ideas about wanting to try something new, volunteering abroad, then I get there and after a month i get bored again quick to anger or get irritable with my family, I don't do it with colleagues, I'll feel it but won't say anything.

It's ruining my life. No amount of CBT or medication has helped for depression or anxiety in the 7 years I've tried it. I went abroad and worked for 3 months in a different country and my diet was great in that time, I was working on a farm so I was getting physical activity but being healthy still doesn't help.

Mostly, I'm just tired all the time from the racing thoughts and not being able to get organised. I can't do a job application because I start it, it overwhelms me and I can't focus on it.

Not related to ADD but I feel like my posture is off sometimes. I was a bit strange as a child. Fussy eater, couldn't wear things with logos on because it wasn't symmetrical, used to play this game in the car where I'd try and count the seconds between the lampposts.

Mostly it's my personal life that's affected and it is really frustrating not being able to talk to someone because I'm stuck in my head and can't think of what to say, or stumbling over words. My mind is a mess even when I'm home alone.

Anyway, I am taking all this to my Doctor next Friday and I imagine he'll refer me to the community mental health team since I don't think GP's diagnosis things like this themselves. I'm wondering how many people who believed they had ADD have then gone on to get an official diagnosis later on?

Alaskamoose
01-08-17, 12:02 PM
It sure sounds like you have ADD like myself; I can relate to so much of your post. I kind of knew something was wrong in my 20's because I coukd seems to follow through on hardly anything when so many other people that I knew moved forward and made progress. In my 30's I started researching ADD and was intrigued by success stories off Add'ers who got on meds; the whole process of getting diagnosed seemed overwhelming though, and it was not until a friend of me gave me an adderall in my 40's, that my brain calmed down for the first time in my life! That experience with medication gave me the motivation to make an appointment with a counselor; a week later after my questionnaire was scored, my therapist gave me the news: I had ADD to the extreme, and if I wanted a life, medication wasn't an option; I cried. My life now made sense and my sense of hope for a new life skyrocketed. It's so worth taking the step toward getting a diagnoses

john2100
01-08-17, 12:05 PM
Anyway, I am taking all this to my Doctor next Friday and I imagine he'll refer me to the community mental health team since I don't think GP's diagnosis things like this themselves. I'm wondering how many people who believed they had ADD have then gone on to get an official diagnosis later on?

98% is my uneducated guess
but what % was miss diagnosed is anyone's guess as well

sorry I didn't see you are in the UK,
my answer was regarding the USA

kilted_scotsman
01-08-17, 12:28 PM
It's quite common in the UK because there are few GP's/clinicians who are familiar with ADHD.

My sense is that the majority of people in the UK hear about ADHD symptoms and think "That's me" then go to their GP and seek a diagnosis as this is the only route to medication.

However there are also the people who know about ADHD and say they think they have it, but don't seek a formal diagnosis. I find difficult to deal with this if they "blame" ADHD for their issues but do not make any movement toward change.

I know that ADHD makes it difficult to do things and it's a long and sometimes daunting process to diagnosis, however nat making ANY effort to obtain a diagnosis is possible evidence that ADHD is not the only problem..... in this situation therapy would help, but once again people don't seem to make a move toward this possibility.

Here in Scotland there are non NHS Low Cost Counselling Services in most towns and cities, which are accessible through GP CAMHS or self referral. Though waiting lists can be long they are often shorter than for non-acute NHS services. These services are generally not ADHD aware and cannot make a diagnosis however a client bringing the possibility of an ADHD diagnosis will be supported through the NHS/Private diagnostic process.

ginniebean
01-08-17, 01:06 PM
I remember reading from an adhd specialist in Toronto saying that 80% of the people who self refer to his office do not have adhd.

john2100
01-08-17, 01:13 PM
I remember reading from an adhd specialist in Toronto saying that 80% of the people who self refer to his office do not have adhd.


Do you think that having "free" health care system is the reason for such a low rate?
Or specialists are not included in the government health care system and people have to pay from their pocket?
sorry dont mean to hijack the tread

Eyebrows
01-08-17, 01:25 PM
I had ADD to the extreme, and if I wanted a life, medication wasn't an option; I cried. My life now made sense and my sense of hope for a new life skyrocketed. It's so worth taking the step toward getting a diagnoses

Why was medication not an option?

Also, forgot to mention, the 'Hammy' nickname was because she thought I was like a hamster because of all the nervous energy I had.

ginniebean
01-08-17, 01:27 PM
Do you think that having "free" health care system is the reason for such a low rate?
Or specialists are not included in the government health care system and people have to pay from their pocket?
sorry dont mean to hijack the tread

I don't think so, he's very good and very compassionate he knows his chops. I think the issue is far too few medical professionals know much of anything about adhd, don't bother to inform themselves, and do the best they can. The difference between getting a good diagnosis and a misdiagnosis can be life changing or altering.

Even tho we do have full socialized medicine here, it's difficult to get into see any psychiatrist because there aren't enough of them, here or elsewhere. It's a sad fact that the stigma associated with mental health extends also to the profession itself. Most people who become Dr's don't want to enter psychiatry. That and the general lack of political will to treat mental health issues.

I believe there is a six month wait to see a psychiatrist unless the situation is dire.

kilted_scotsman
01-08-17, 01:43 PM
Do you think that having "free" health care system is the reason for such a low rate?
Or specialists are not included in the government health care system and people have to pay from their pocket?

We have a free system here too. I don't think the reason is the free system... it's more likely to be around the lack of knowledge about the other issues that might cause the ADHD symptom cluster. People know about ADHD, they don't have the detailed knowledge of the DSM that the psych's do.....

While 80% of the people might not have ADHD I wonder how many walk out with some other diagnosis that they didn't know existed, or that they find their symptoms are not severe enough to be classified as a disorder under the DSM system.

I have a sense that in a system where clients can "shop around" for a diagnosis psych's who are less scrupulous can make more money because if they send the client away without a diagnosis they get one fee, if they diagnose they get repeated fees. There is an incentive towards +ve diagnosis that doesn't exist in the free system.

Likewise in the free healthcare system there is significant waiting list pressure on psychs and they want to clear people though quickly, therefore there is a pressure on unscrupulous psychs not to diagnose if the symptom cluster isn't severe. ...... the opposite to the paid/insurance based system.

john2100
01-08-17, 01:53 PM
I don't think so, he's very good and very compassionate he knows his chops. I think the issue is far too few medical professionals know much of anything about adhd, don't bother to inform themselves, and do the best they can. The difference between getting a good diagnosis and a misdiagnosis can be life changing or altering.

Even tho we do have full socialized medicine here, it's difficult to get into see any psychiatrist because there aren't enough of them, here or elsewhere. It's a sad fact that the stigma associated with mental health extends also to the profession itself. Most people who become Dr's don't want to enter psychiatry. That and the general lack of political will to treat mental health issues.

I believe there is a six month wait to see a psychiatrist unless the situation is dire.

Exactly that was my point, if the system is "free" it means not everybody can be given proper care and meds.

If the system is motivated by $ ,even people who dont have adhd will get diagnoses.

ginniebean
01-08-17, 03:07 PM
Exactly that was my point, if the system is "free" it means not everybody can be given proper care and meds.

If the system is motivated by $ ,even people who dont have adhd will get diagnoses.

No, that's not what I meant. Actually everyone is given proper care and meds. while it's true those hostile to the adhd diagnosis send people away, considering it not severe enough or simply do not believe in it. I have had docs who know I was diagnosed at 4 years old tell me they want nothing to do with treating adhd.

A specialist IN adhd takes the time to do a proper diagnosis and because so many other mental health syndromes share the same symptoms are able to get people the help they really need rather than just a rubber stamp.

Our system while not perfect is pretty good, people here are very satisified on the whole. There is no two tier system, meaning one bunch gets the better care and others do not, everyone gets good care. There's no where on earth that has excellent mental health care that I know of. Perhaps some of the european countries.

20thcenturyfox
01-08-17, 05:14 PM
I was fortunate to have a psychiatrist who was suspicious enough of my depression diagnosis (when my symptoms were almost entirely poor concentration and motivation, not mood-related) to be willing to try stimulants experimentally. When they not only helped me focus better, but also to sleep better, she had me assessed for ADHD.

And it came back negative! This was in the early '90's. It's true I aced the Stroop test by just taking off my glasses so I could see the colour better without being distracted by the word (which was dumb, I know, but I just couldn't help trying to do my best). Basically the specialist concluded I had all the symptoms but I was too high-functioning and too conventionally successful, so more likely just suffering performance anxiety. But rereading the assessment report today, it's pretty funny how disconnected from the observations the conclusion is.

(Nor was there any consideration of how exceedingly optimal my social and work environment then was to support the strengths and compensate for the weaknesses of ADHD. I never realized it myself until I lost it. Having a supportive spouse, plus receptionist, administrative assistants, secretaries, receptionist and bookkeepers really does cover a multitude of deficits! Few thought it strange that I would pull all-nighters to get away from the distractions of the phones, or forget everything else when working on a deadline.)

Luckily my doctors continued to treat me for ADHD (or whatever) without putting a name on it, along with the supposed depression, giving me plenty of latitude to try various combinations and dosages. I know I would not have been able to function as well as I did for as long as I did without the magic of stimulants.

What I did not do, however, was learn the self-regulatory and coping strategies I would eventually need to survive on my own after being widowed and retired.

Fraser_0762
01-08-17, 05:31 PM
We have a free system here too. I don't think the reason is the free system... it's more likely to be around the lack of knowledge about the other issues that might cause the ADHD symptom cluster. People know about ADHD, they don't have the detailed knowledge of the DSM that the psych's do.....

While 80% of the people might not have ADHD I wonder how many walk out with some other diagnosis that they didn't know existed, or that they find their symptoms are not severe enough to be classified as a disorder under the DSM system.

I have a sense that in a system where clients can "shop around" for a diagnosis psych's who are less scrupulous can make more money because if they send the client away without a diagnosis they get one fee, if they diagnose they get repeated fees. There is an incentive towards +ve diagnosis that doesn't exist in the free system.

Likewise in the free healthcare system there is significant waiting list pressure on psychs and they want to clear people though quickly, therefore there is a pressure on unscrupulous psychs not to diagnose if the symptom cluster isn't severe. ...... the opposite to the paid/insurance based system.

I've suspected for the best part of a decade and still haven't spoken to anybody about it. I think if I was living in the US, it would be different. But I have visions of trying to seek help in the UK, only to be ridiculed and accused of drug seeking behaviour. This combined with my chronic procrastination issues makes it seem like an impossible barrier to overcome.

I'm always broke, so going private isn't an option for me. So I would need to do it the "hard way" instead and I just can't find the confidence and motivation to do that.

kilted_scotsman
01-08-17, 07:19 PM
I have visions of trying to seek help in the UK, only to be ridiculed and accused of drug seeking behaviour.

Yes you may have visions of this happening, but since you have not spoken to anyone you have no evidence that this will occur in your case, therefore this is a belief not founded in reality.

There are several free counselling services within easy reach of you so finance is not an issue in getting psychological support. OK so these have waiting lists but I know the lists are shorter than the NHS and thses services can provide access to longer term and more varied therapeutic support than the NHS.

Procrastination is your issue.... finance is not.

Fraser_0762
01-08-17, 07:33 PM
Yes you may have visions of this happening, but since you have not spoken to anyone you have no evidence that this will occur in your case, therefore this is a belief not founded in reality.

There are several free counselling services within easy reach of you so finance is not an issue in getting psychological support. OK so these have waiting lists but I know the lists are shorter than the NHS and thses services can provide access to longer term and more varied therapeutic support than the NHS.

Procrastination is your issue.... finance is not.

I don't even know where these counselling services are located or how to contact any of them. I'd search online, but I'm not even sure where to start, or if i'd even be looking in the right place. I'm sure different counselling services offer different things. It's trying to target the right one's that make it a barrier for me. I'd also have no idea what to expect from them, as it would be a completely different experience for me.

Apologies if it comes across like i'm making up excuses not to get help. But I really am finding this incredibly difficult.

Doing things i've never done before isn't a skill that comes naturally to me.

kilted_scotsman
01-09-17, 05:52 AM
I'm sure different counselling services offer different things.

Why are you so "sure" of this??? Yes there are counselling services for people with specific issues, however both these and the generic low cost counselling services offer a range of therapists and modalities. The counsellor you get is usually decided by the centre manager after an initial intake session. The manager tries to select a therapist who has skills likely to work with the issues you present with. This is not always successful owing to availability, scheduling and the mix of therapists in the centre at the time. If you don't like the therapist you get, there are others you can move to.

Your GP will know the centres in your area.

Apologies if it comes across like i'm making up excuses not to get help.
Your response is interesting..... combined with your response I quoted above.... it suggests you subconsciously know you are putting blocks inside your head that don't exist in reality.

It's possible you are locked into the psychological pattern psychotherapists call "Yes But" This is common amongst procrastinators and has a range of causations. One way of looking at it is that "Yes Butters" get their social interaction from presenting/hinting at a problem then shooting down all attempts by others to solve the problem. Eventually people get ****** off, giving the person the "script payoff" that their problem is bigger than other peoples because it is so difficult to solve and additionally that nobody makes "any" effort to help them/be their friend.

Doing things i've never done before isn't a skill that comes naturally to me
You are a human who has "naturally" learned to do a myriad of things you've never done before, from walking through talking, eating, using the internet, operating technology.... the list is endless. You seem to have convinced yourself that you "should" be able to do things "naturally" and that "naturally" means without effort. Unfortunately learning "naturally" does involve considerable effort as anyone watching a toddler trying to walk/eat etc will know.

There are at least 30 counsellors in Edinburgh working out of half a dozen generic low cost counselling services who offer up to 20 weeks of free therapy sessions within a bus ride of your college. By chance you have ended up in the one city in Scotland (and probably in the whole of the UK outside London) where there's a range of psychotherapy training establishments, all producing students who have to work for free in the 3rd sector to get their final accreditation.

Likewise Edinburgh is Scotland's ADHD hub and was the second place in the UK after London to have an NHS ADHD clinic. It also had an ADHD parliamentary lobby group who got Adult ADHD included in the Scottish mental health guidelines well ahead of the NHS south of the border. The NHS's primary ADHD specialist outside London practices in the city and has promoted Adult ADHD awareness across the mental health services in the city.

I suspect that, you are in a far better geographic location to access free mental health support, both NHS and 3rd sector, than almost anyone else on this board.

The reason I am saying this stuff is that it points toward what is indicated in this article (https://depressionsupportnetwork.wordpress.com/2008/03/27/the-drama-triangle-and-the-winners-triangle/) on the Drama Triangle and Winners Triangle. The article points out that, to move forward, someone in the "victim" position on the Drama triangle needs to concentrate their effort on building their problem solving ability. This isn't going to be helped by other people spoon feeding the individual but through support in realistically assessing issues and options, deciding on a solution and then acting upon it.

Understanding that you are making blocks in your head that don't exist in reality is an important first step forward...... so learning to REALISTICALLY assess options using external evidence is your main work.....

Yes some things are harder for ADDers and they cause us significant issues, however picking up the phone and making an appointment with a GP in a country with free healthcare is not something we usually find "incredibly difficult".

From your posts I would comment that trying to get an ADHD diagnosis might be a long process because you seem to have other issues that may be related to ADHD but are possibly more acute and a psych is likely to want to sort those out first. This is likely to cause you problems as you may have fixed upon ADHD as your main issue and any deviation from this by the psych/GP/therapist will trigger you to reject the offered help..... in the same way as your "Yes But" process operates.

It would be useful if you could come back with some indication of why it is so hard for you to make an appointment with your GP. Do you have a phobia around phones, or doctors?

Fraser_0762
01-09-17, 07:29 AM
Ok, I can tell your upset with me for whatever reason. But i'm not as clued up about these things as you are. Just because it all makes sense to you and the process makes sense to you, doesn't mean it's the same for me ok.

If I had a clear understanding of exactly what to do and exactly what would happen, then it wouldn't be a problem. But I really have no idea how it all works.

As for creating my own blocks, obstacles, down falls.... etc. If I didn't do these things, I probably wouldn't even be on here.

I have a phobia of failure and ridicule (as do most people on this board). My confidence has taken so many hits over the years that it simply can't take anymore. I don't want to seek help, only to be told that it's all my own fault. (I know that might not happen, but theres no guarantee that it won't either)

BellaVita
01-09-17, 09:05 AM
Yes some things are harder for ADDers and they cause us significant issues, however picking up the phone and making an appointment with a GP in a country with free healthcare is not something we usually find "incredibly difficult".

You do know he has Asperger's right?

It could be incredibly difficult for autistics to make a phone call like that.

Trust me, I know from experience.

And the doing things he's never done before not coming naturally to him is something I can very much relate to. I have to repeat something over and over before I can know how to do it. I worked in the cafeteria at my highschool, mostly just did the cleaning up no cooking really, and one of the girls who worked there got annoyed with me because for two entire months ( or a bit more) that I worked there every single day I had to follow her around and ask her to show me how to do the simple tasks.

She eventually started writing out detailed instructions for me on a whiteboard, keep in mind her and I both started the job at the same time, yet I still had to follow her around for two months or more. ( and she complained about it to her friends, that sucked, because I didn't even know that what I was doing was abnormal) After that time had gone by I eventually understood the job.

I'm like this with a lot of things in every day life too, stuff that seems simple for most people, even lots of stuff that seems simple for someone with ADHD can be hard for me. I know this because my husband has ADHD and he finds many tasks to be much easier than they are for me. Tasks that most people would think are easy.

kilted_scotsman
01-09-17, 10:30 AM
You do know he has Asperger's right?

Fraser...my apologies.... the tone of our previous posts mislead me into thinking the issue lay around your mental blocks around moving toward a first diagnosis. I didn't know you already had a formal spectrum diagnosis.

That puts a completely different slant on things.

Fraser_0762
01-09-17, 10:35 AM
Fraser...my apologies.... the tone of our previous posts mislead me into thinking the issue lay around your mental blocks around moving toward a first diagnosis. I didn't know you already had a formal spectrum diagnosis.

That puts a completely different slant on things.

Hey, don't worry about it. I can see how my way of thinking can be frustrating for others. It's frustrating to me more than anyone.

kilted_scotsman
01-09-17, 11:56 AM
I'm confused about why you're not getting the support you are entitled to. Your AS diagnosis should have automatically enabled additional support at college (including financial grants & equipment). There will be a trained disability support person who will help you and will be well used to helping with students with Aspergers.