Neurodiversity: How do you do it?

[mickeyc]

I never know even how to start these posts 🤷🏻‍♂️

I've felt different to other people my whole life. I've struggled to make meaningful friendships and relationships, never been able to organise myself or concentrate on important tasks, put things off all the time, struggled with my self-worth, struggled to maintain a job, I'm prone to angry outbursts when frustrated, have word blindness and short term memory issues, and have bouts of depression and severe anxiety attacks.

Despite all of this I have managed to land an excellent job opportunity in the last year, although I continue to struggle with significant bouts of imposter syndrome. I'm getting support for my mental health, but I have been on a waiting list for an ADHD (more likely ADD) diagnosis for more than four years now and feel like I'm in a constant state of limbo, unable to move my life forward.

I've been reading about ADHD; its symptoms and methods of managing it because my son was diagnosed a few years ago, but I have struggled to put anything into practice.

Sorry for the long post but has/is anyone else been in the same situation? What have you found that works for you?

[anonymous-user]

can you afford to pay privately for an assesmsent?

[Ozzie Dave]

Diagnosed at 52- (2 years ago) now take meds to help it completely changed my outlook and allowed me to concentrate. The sad thing is that I only have 5 jobs on the go at the same time rather than the old 20+, the good thing is most get completed. Tried to send private e-mail but it wont allow me to.

[mickeyc]

lord trumpton said:

can you afford to pay privately for an assesmsent?

Sadly not. Assessments are often provided by the same organizations as the NHS, however to receive the follow on care required after diagnosis, NHS seem to be more reluctant if you have a private diagnosis.

[mickeyc]

Ozzie Dave said:

Diagnosed at 52- (2 years ago) now take meds to help it completely changed my outlook and allowed me to concentrate. The sad thing is that I only have 5 jobs on the go at the same time rather than the old 20+, the good thing is most get completed. Tried to send private e-mail but it wont allow me to.

Hi Dave, have turned on my email settings (didn't realise it was a thing) and reached out via a PM. Hopefully you've received.

[Animal]

mickeyc said:

lord trumpton said:

can you afford to pay privately for an assesmsent?

Sadly not. Assessments are often provided by the same organizations as the NHS, however to receive the follow on care required after diagnosis, NHS seem to be more reluctant if you have a private diagnosis.

Hi Mickey,

I had a private assessment for ADD/ADHD earlier this year (following a referral letter from my GP; I luckily have private healthcare) - the cost was £c.2,200 for the assessment and report. I was diagnosed with mild to moderate ADD (inactive) and was given a prescription for medication. Private prescription cost was about £100 per month and it took 3 months to titrate (find a stable dose), at which point I had a follow-up session with the private therapist and a further report confirming stable dosage - at which point I could show this to my GP who issued a repeat prescription for the medication. NHS prices are obviously a lot more tolerable.

I think there is some truth behind my suspicion that these private assessments are always happy to diagnose something (because they'll earn money out of it), but I feel an awful lot better after starting the meds so for me it was a fortunate win.

[mickeyc]

Animal said:

mickeyc said:

lord trumpton said:

can you afford to pay privately for an assesmsent?

Sadly not. Assessments are often provided by the same organizations as the NHS, however, to receive the follow on care required after diagnosis, the NHS seem to be more reluctant if you have a private diagnosis.

Hi Mickey,

I had a private assessment for ADD/ADHD earlier this year (following a referral letter from my GP; I luckily have private healthcare) - the cost was £c.2,200 for the assessment and report. I was diagnosed with mild to moderate ADD (inactive) and was given a prescription for medication. Private prescription cost was about £100 per month and it took 3 months to titrate (find a stable dose), at which point I had a follow-up session with the private therapist and a further report confirming stable dosage - at which point I could show this to my GP who issued a repeat prescription for the medication. NHS prices are obviously a lot more tolerable.

I think there is some truth behind my suspicion that these private assessments are always happy to diagnose something (because they'll earn money out of it), but I feel an awful lot better after starting the meds so for me it was a fortunate win.

Hey Animal,

Great to hear you're story. I do get a level of private care through work, however, I don't think it's sufficient to cover those sorts of costs. I'll take a look into that.

I suspect (from what I've researched) that I'd have mild to moderate ADD too. I present few of the hyperactive characteristics.

What brought you to the point that you thought you needed an assessment?

What coping strategies did you use in the time before your diagnosis?

What difference has the medication made to your daily life and routine?

Feel free to DM me if you prefer.

[Woodrow Wilson]

mickeyc said:

I never know even how to start these posts ???????

I've felt different to other people my whole life. I've struggled to make meaningful friendships and relationships, never been able to organise myself or concentrate on important tasks, put things off all the time, struggled with my self-worth, struggled to maintain a job, I'm prone to angry outbursts when frustrated, have word blindness and short term memory issues, and have bouts of depression and severe anxiety attacks.

Despite all of this I have managed to land an excellent job opportunity in the last year, although I continue to struggle with significant bouts of imposter syndrome. I'm getting support for my mental health, but I have been on a waiting list for an ADHD (more likely ADD) diagnosis for more than four years now and feel like I'm in a constant state of limbo, unable to move my life forward.

I've been reading about ADHD; its symptoms and methods of managing it because my son was diagnosed a few years ago, but I have struggled to put anything into practice.

Sorry for the long post but has/is anyone else been in the same situation? What have you found that works for you?

I can relate to much of what you have written.

There are various posts on here about similar issues (search with Google) that many people have contributed to.

In summary for me:

I have had similar problems and difficulties throughout life.

I knew I was a bit different, but couldn't really describe them, winged-it a lot and just felt quite down about it for many years. It was compounded by feeling of not living up to my potential/expectations. I have done, do, and know/learn a lot more different things than most people do, though.

A few years ago I heard about ADHD in adults and spoke to the GP. I was referred on, but wasn't taken seriously, although was diagnosed (I discovered later).

I returned a couple of years later and was put on another referral list. Two years later, I had a consultation and a proper diagnosis and medication, in my mid 40s.

I then left my boring and unsuitable job.

I now have another job that is very varied, fast moving and very busy.

I do sometimes wonder if the medication is still working, as planning and organisation is still tough, but if I don't take it, I am worse and by 3pm I am really struggling.

I am functioning better at work than I ever have done.

My new job is going well, I try very hard and put in extra unpaid hours, although I do still get some comments about "not being distracted" and "trying to focus on the important things", but in reality those things are just the flip-side of my strengths and abilities. (I have never brought up the subject of nuero-diversity explicitly, as I don't think it would help)

I definitely work better under a bit of pressure, but I require deadlines and I make use of electronic task planning (Outlook and Google calendar) and note taking (Google Keep) apps. I need to write things down and highlight tasks or else I will forget them.

Ideally, in time, I will be able to modify my role to focus less on the bits I am not as good at and work my way up to a position similar to where I was in my previous job.

-If not, then at least I have shown to myself that I can work well and it is not just laziness or lack of effort and can look for something slightly different.

Ps. I'm still not sure if ADHD is an actual thing or just a slightly different version of normal that is a bit out of step with modern life....

[popeyewhite]

Woodrow Wilson said:

Ps. I'm still not sure if ADHD is an actual thing or just a slightly different version of normal that is a bit out of step with modern life....

I think you are spot on with this comment. There is no medical diagnosis for ADHD, and the rather expensive test contains little more than subjective assessment of one's own self-perceived symptoms. I do wonder when someone wrote the questions for the test what they used as a benchmark for 'normal', and how they came to that decision.

[Woodrow Wilson]

popeyewhite said:

Woodrow Wilson said:

Ps. I'm still not sure if ADHD is an actual thing or just a slightly different version of normal that is a bit out of step with modern life....

I think you are spot on with this comment. There is no medical diagnosis for ADHD, and the rather expensive test contains little more than subjective assessment of one's own self-perceived symptoms. I do wonder when someone wrote the questions for the test what they used as a benchmark for 'normal', and how they came to that decision.

Don't get me wrong. This was not just giving sceptics an "Aha!" Opportunity.

I am not denying that some people are different to the norm or that some people have terrible difficulties, I just not sure what it is.

I am different from the large majority of people. It is difficult for most people, who are like me (educated, intelligent, articulate, "middle class") , but not like me, to understand.

For example, the effort involved in being organised and planning even fairly basic things is often exhausting, moreso than physical exertion.

Thoughts can be all over the place and distraction by the most minor thing, unless totally engaged in something, is constant.

I have to be doing something.

Noise and hearing multiple conversations can often be very unpleasant.

I have spoken to others who have had similar experiences and that was very helpful to me.

[pherlopolus]

popeyewhite said:

Woodrow Wilson said:

Ps. I'm still not sure if ADHD is an actual thing or just a slightly different version of normal that is a bit out of step with modern life....

I think you are spot on with this comment. There is no medical diagnosis for ADHD, and the rather expensive test contains little more than subjective assessment of one's own self-perceived symptoms. I do wonder when someone wrote the questions for the test what they used as a benchmark for 'normal', and how they came to that decision.

As a newly diagnosed ADHDr at 51 I was about to take you both to task, then i thought about it and had a re-think. I think it is definitely a disability of sorts brought on by a brain issue (I think they have proved it’’s a frontal lobe issue) but it’s probably an evolutionary adaptation. I think I read somewhere we were perfectly adapted to keeping a fire going all night.

[Woodrow Wilson]

pherlopolus said:

popeyewhite said:

Woodrow Wilson said:

Ps. I'm still not sure if ADHD is an actual thing or just a slightly different version of normal that is a bit out of step with modern life....

I think you are spot on with this comment. There is no medical diagnosis for ADHD, and the rather expensive test contains little more than subjective assessment of one's own self-perceived symptoms. I do wonder when someone wrote the questions for the test what they used as a benchmark for 'normal', and how they came to that decision.

As a newly diagnosed ADHDr at 51 I was about to take you both to task, then i thought about it and had a re-think. I think it is definitely a disability of sorts brought on by a brain issue (I think they have proved it’’s a frontal lobe issue) but it’s probably an evolutionary adaptation. I think I read somewhere we were perfectly adapted to keeping a fire going all night.

I hope I clarified what I meant adequately. I am speaking as somebody with these traits who is trying to work it out.

I'm not sure that is a "disability" as such, other than in some contexts that are common in modern life.

I am somebody who is enthusiastic, good at all kinds of things (including communication) and responding to situations. I'm not good at other "admin" type things or following schedules.

The evolutionary thing (Hunter v Farmer idea) does appear to fit me.

[Don1]

I've always struggled with taking things too literally, being far too trusting/nieve on top of serious dyslexia and the like. I will never be diagnosed beyond what I have been, but it doesn't stop me finally recognising my behaviours.

Therefore I try to play to my strengths and manage environments that I struggle in. I take notes in meetings and make sure I can't be distracted. I try to make sure I understand everything. I will play devil's advocate to make sure I understand something.

You have a superpower. Just learn how to harness it. (Far easier said than done, I know).

[Animal]

mickeyc said:

Hey Animal,

Great to hear you're story. I do get a level of private care through work, however, I don't think it's sufficient to cover those sorts of costs. I'll take a look into that.

I suspect (from what I've researched) that I'd have mild to moderate ADD too. I present few of the hyperactive characteristics.

What brought you to the point that you thought you needed an assessment?

What coping strategies did you use in the time before your diagnosis?

What difference has the medication made to your daily life and routine?

Feel free to DM me if you prefer.

Long story, but I'd had depression all of my adult life which because more acute 5-6 yrs ago when my son was born (lack of sleep, work pressure etc) and during lockdown I really couldn't concentrate on work very well. I put it down to the disruption of working from home and a lack of discipline but earlier this year I was reading through a thread somewhere (might even have been on PH) about how ADD/ADHD can be misdiagnosed as depression or that depression can be a by-product of ADD.
So, I went to my GP and told I'd been reading on the internet and asked for a referral. My health care only covers the cost of the assessment, after which I had to meet the cost of the medication (I was prescribed Elvanse) myself. Took 3 months to find a stable dosage and I can feel it working within 30-60 minutes. I'm much more able to concentrate and finish tasks, I can work faster and just generally be more productive.

The medication suppresses my appetite; I've lost about a stone in 3 months (luckily I had the excess to lose) but also interferes with my sleep. I have to be very disciplined with my sleep habits otherwise it's not unusual for me to get only 4-5 hours a night of broken sleep. Occasionally I also have more severe insomnia where I'll struggle to get to sleep until about 3am then give up! Having a regular routine helps.
I also find I'm more irritable though, which is not great!

[pherlopolus]

Animal said:

Long story, but I'd had depression all of my adult life which because more acute 5-6 yrs ago when my son was born (lack of sleep, work pressure etc) and during lockdown I really couldn't concentrate on work very well. I put it down to the disruption of working from home and a lack of discipline but earlier this year I was reading through a thread somewhere (might even have been on PH) about how ADD/ADHD can be misdiagnosed as depression or that depression can be a by-product of ADD.
So, I went to my GP and told I'd been reading on the internet and asked for a referral. My health care only covers the cost of the assessment, after which I had to meet the cost of the medication (I was prescribed Elvanse) myself. Took 3 months to find a stable dosage and I can feel it working within 30-60 minutes. I'm much more able to concentrate and finish tasks, I can work faster and just generally be more productive.

The medication suppresses my appetite; I've lost about a stone in 3 months (luckily I had the excess to lose) but also interferes with my sleep. I have to be very disciplined with my sleep habits otherwise it's not unusual for me to get only 4-5 hours a night of broken sleep. Occasionally I also have more severe insomnia where I'll struggle to get to sleep until about 3am then give up! Having a regular routine helps.
I also find I'm more irritable though, which is not great!

I find I am more irritable, especially as it wears off! The sleep thing is difficult, I have some melatonin gummies which help to a degree. I find going to bed earlier, even if I just read/watch YouTube helps. It’s been proved(?) that even if you just like in bed listening to music or a talking book can be almost as good as sleep, so I put talking book on and drowse from 4am (it’s always 4am)

[Animal]

pherlopolus said:

I find I am more irritable, especially as it wears off! The sleep thing is difficult, I have some melatonin gummies which help to a degree. I find going to bed earlier, even if I just read/watch YouTube helps. It’s been proved(?) that even if you just like in bed listening to music or a talking book can be almost as good as sleep, so I put talking book on and drowse from 4am (it’s always 4am)

Where did you get the gummies?

[pherlopolus]

I got them from Walmart in the states while over there. They are just sitting on the shelves next to the tubs of 500 ibuprofen 😂

[Animal]

pherlopolus said:

I got them from Walmart in the states while over there. They are just sitting on the shelves next to the tubs of 500 ibuprofen ??

Just checked - Melatonin is prescription-only in the UK.

[pherlopolus]

Not illegal to personally import, and I was offered it on prescription by psychologist