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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

What's the point of an ADHD diagnosis?

322 replies

HelpAGirlOut1234 · 23/08/2024 12:21

Just as the title says... what is actually the point if you have no intention of taking medication, or medicating your child.

OP posts:
Psychoticbreak · 23/08/2024 18:06

I think for the risk of burnout alone it is worth the assessment. I had a massive burnout and meltdown last year and did not know what was happening to me. Felt I was actually going mad. I now know the triggers and what I can do to stop it happening again but at the time I didnt know I had adhd and would not have known anything that I know now. Armed and dangerous with info now and medication is helping me so much. I came off anxiety and bp meds as both were due to the adhd. I now take my meds and they are the only things I take and after decades of insomnia I now sleep every night of the week. It has been a game changer.

PiggieWig · 23/08/2024 18:07

But as an adult who is say, disorganised, can't focus etc. How does a diagnosis help with that? It's not like you're diagnosed and go to classes to manage these behaviours

There are lots of resources available. Our area offers psychosocial intervention in addition to medication.
People may chose to seek out an ADHD coach who can help them come up with strategies tailored to them. They may decide to read more about the condition, or follow certain accounts on social media to get tips.
Knowing you have a condition is the starting point to learning about it - it’s a reason a lot of people seek a diagnosis. A starting point. If they could figure it out for themselves they probably would have.

NewFriendlyLadybird · 23/08/2024 18:12

Pookerrod · 23/08/2024 16:00

She also worried about uni applications. She is going for very prestigious uni’s and highly competitive uni courses to boot.

She says she doesn’t want anything on her record that could possibly count against her.

I have no idea if a diagnosis could do that. I know that would be illegal discrimination, but I don’t know for sure whether it still happens or not so I can’t reassure her either way.

It won’t affect uni application.

My DC with raging ADHD has just finished a degree at a prestigious university. Got a lot of support.

thefamous5 · 23/08/2024 18:14

I didn't get a diagnosis until I was 36.

I work for myself.

I got it because it validates me. It explains why some of my behaviours are that way. I felt like I was loosing the plot at one point, but a diagnosis made me realise it wasn't anything I was doing wrong.

NewFriendlyLadybird · 23/08/2024 18:16

Zonder · 23/08/2024 15:56

Personally I wish meds weren't the first port of call. For our family ADHD is more about knowing what we are dealing with, learning strategies for life, and understanding what is behind behaviours.

I’m not sure they are the first port of call actually. But they work!

No one is morally or intellectually better for not taking effective medicine for a properly diagnosed condition. It’s not cheating.

IpsyUpsyDaisyDoos · 23/08/2024 18:16

mugglewump · 23/08/2024 17:21

Why would you not want to medicate? I know the meds have down sides and cannot 'cure' ADHD, but being able to concentrate and organise yourself makes life so much easier for a person with ADHD.

I think it's really easy to say that if you've never had an adverse reaction to a medication.

Or if you've never been on meds that alter your mind and make you feel unlike yourself.

Medication and chemicals aren't for everyone. It's alright to want to try other methods.

thefamous5 · 23/08/2024 18:18

To add..

My adhd behaviours are not 'shortcomings'. They are a part of me. Yes, I work hard to manage them, but they are not flaws or shortcomings. They're part of me, my personality, my condition.

I don't medicate because i already take medication of ocd, and while I don't love some aspects of adhd, there are some parts that I actually find helpful and again, they make me who I am.

Zonder · 23/08/2024 18:25

NewFriendlyLadybird · 23/08/2024 18:16

I’m not sure they are the first port of call actually. But they work!

No one is morally or intellectually better for not taking effective medicine for a properly diagnosed condition. It’s not cheating.

The post below yours here was very clear on why meds aren't necessarily the first port of call, or right for everyone.

Talking about being morally or intellectually better for not taking meds may be a projection. I certainly didn't say it.

Otherstories2002 · 23/08/2024 18:30

Zonder · 23/08/2024 18:01

My point is you can get extra time for some of the symptoms of ADHD...

processing delays are not a diagnostic feature of adhd.

Extra time without a diagnosis is not awarded for the symptoms of adhd without a diagnosis in the way you’re describing. They are awarded for processing delays which involves formal testing. I suggest you read the JCQ guidance which covers this in full, because it’s unlikely that any student with adhd without a diagnosis would qualify, arguably there weren’t grounds for testing.

I literally work and am qualified in this area whereas you’re coming at it from a parent who doesn’t have a full understanding of the formal requirements for extra time.

CowboyJoanna · 23/08/2024 18:34

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Otherstories2002 · 23/08/2024 18:40

Zonder · 23/08/2024 18:01

My point is you can get extra time for some of the symptoms of ADHD...

In fact, just in case anyone thinks we equally informed here’s the proof.

www.jcq.org.uk/wp-content/uploads/2023/08/JCQ-Overview-of-evidence-requirements-23_24-FINAL.pdf

NowImNotDoingIt · 23/08/2024 18:44

@CowboyJoanna while meds are still the gold standard, there are plenty of other things available that can help. Meds don't work for everyone in the same way, some people can't take them, or parents are concerned, especially if their child is quite young.

Otherstories2002 · 23/08/2024 18:44

NowImNotDoingIt · 23/08/2024 18:44

@CowboyJoanna while meds are still the gold standard, there are plenty of other things available that can help. Meds don't work for everyone in the same way, some people can't take them, or parents are concerned, especially if their child is quite young.

Who has said they’re the gold standard?

Zonder · 23/08/2024 19:02

Otherstories2002 · 23/08/2024 18:30

processing delays are not a diagnostic feature of adhd.

Extra time without a diagnosis is not awarded for the symptoms of adhd without a diagnosis in the way you’re describing. They are awarded for processing delays which involves formal testing. I suggest you read the JCQ guidance which covers this in full, because it’s unlikely that any student with adhd without a diagnosis would qualify, arguably there weren’t grounds for testing.

I literally work and am qualified in this area whereas you’re coming at it from a parent who doesn’t have a full understanding of the formal requirements for extra time.

Oh for goodness sake! I didn't say they were! I hope you listen to the people you work with a bit better than this.

Zonder · 23/08/2024 19:03

Otherstories2002 · 23/08/2024 18:40

In fact, just in case anyone thinks we equally informed here’s the proof.

www.jcq.org.uk/wp-content/uploads/2023/08/JCQ-Overview-of-evidence-requirements-23_24-FINAL.pdf

This looks like you're turning this into a competition 😂

Postachio2 · 23/08/2024 19:06

Pookerrod · 23/08/2024 18:01

She can’t turn it off, obviously. She has learned that she effectively has less time in her exams than other people. She knows that her mind will wander, that she’ll lose concentration, that she won’t be able to read through her work at the end of the test to check for mistakes, that she won’t spot mistakes easily.

That means the pressure is on for her to work incredibly accurately during her exams. And incredibly fast.

I have no idea for how long she’ll be able to keep this up.

But this thread and all the really helpful PP’s talking about their own experiences has made me decide I need to talk to her again about this and show her this thread.

If it hasn’t damaged her education ( and getting into a prestigious university isn’t exactly saying it has) I doubt she’ll get a diagnosis. You have to prove it impairs functioning in education.

BertieBotts · 23/08/2024 19:18

It was helpful to me to have a trained, experienced professional look at all of the evidence and say "Yes, you have ADHD - your symptoms/behaviour/traits are consistent with this diagnosis and not likely to be caused by another diagnosis". (They generally screen for other similar-presenting issues during the assessment process).

I had intended to go on medication, indeed she recommended it straight away. But long story short, I didn't get properly medicated until 7 years later.

It was still extremely helpful to have the diagnosis, because that confirmation by a professional enabled me to fully embrace it rather than constantly second guessing myself and wondering if I was just making excuses, this is totally normal, adult life is just hard, and I'm lazy and useless, which is basically what my mental explanation was for my own difficulties before I got the diagnosis. In the period between suspecting ADHD and getting diagnosed, I would have periods of "Why don't I try this ADHD type management tip and see if it helps?" but ultimately I'd get hit with that imposter syndrome/feel like a fraud and not invest 100% into it because of those feelings, so it would inevitably fail and then I'd spiral into depression again.

Since diagnosis I have felt like it was totally legitimate for me to buy books about ADHD, listen to podcasts about ADHD, speak to other people online who have an ADHD diagnosis, etc, and doing all of these things have been really helpful. Maybe some people find it easy to do that even without an official diagnosis - for me it was very difficult and I felt self-conscious about it too.

I should say that I got diagnosed in 2016, so the waiting list was something ridiculously short like 3 months. I don't know if I was facing the same wait today, that I would have the same feelings. For example, my 6yo is on a waiting list for Autism/ADHD diagnosis. I am pretty confident that he has either one of them possibly both. And I really don't feel as self-conscious about accessing support materials/online support spaces although I am upfront and state that he is awaiting assessment and we only suspect. This could be because I'm more confident in my judgement because I'm older and more experienced. But it might also be that I've kind of been forced into this confidence because we have been waiting so long and the issues aren't just magically going away, in some ways they are getting worse. The pattern is very clear, anyway, whereas when I first made the application for assessment, I was less sure about what they might later find.

It seems to me that with the waiting lists being so long, it would be useful to have a sort of pre-assessment which helps screen out some common-ish issues which can look like ADHD symptoms (sleep problems, vitamin deficiencies, coeliac, thyroid issues) and then if the concerns still remain for ADHD, keep the person on the waiting list and offer details of local support groups.

BertieBotts · 23/08/2024 19:21

Postachio2 · 23/08/2024 19:06

If it hasn’t damaged her education ( and getting into a prestigious university isn’t exactly saying it has) I doubt she’ll get a diagnosis. You have to prove it impairs functioning in education.

No, you just need significant impairment in at least 2 domains - home and social, home and work, work and relationships, diet and impulse spending, whatever it is - it just needs to show that the same things are present across multiple settings, and it's not just one setting (e.g. an abusive relationship) that is causing the person to struggle.

5% of people with ADHD graduate university (and quite a lot more get into one) so it's not exactly impossible, it's just much harder.

I got into university and A Levels, I didn't finish either of them.

Postachio2 · 23/08/2024 19:28

BertieBotts · 23/08/2024 19:21

No, you just need significant impairment in at least 2 domains - home and social, home and work, work and relationships, diet and impulse spending, whatever it is - it just needs to show that the same things are present across multiple settings, and it's not just one setting (e.g. an abusive relationship) that is causing the person to struggle.

5% of people with ADHD graduate university (and quite a lot more get into one) so it's not exactly impossible, it's just much harder.

I got into university and A Levels, I didn't finish either of them.

Not saying you can’t get into uni. I did, 2 of my children have but my incredibly bright children and I did not get the A levels or unis we should have had. Frankly if you are getting a raft of A* Alevels and into Oxbridge I’m not sure you can prove you have ADHD as work is like school. It needs the same level of ability to sit for hours, focus on an activity, be organised etc. You can get through GCSEs coping with ADHD and limited focus and organisation but A levels are a whole other ball game. As at Alevel are another level and full potential achieved.My support group is full of people with impacted education and work and people who haven’t achieved their full potential .

Otherstories2002 · 23/08/2024 19:57

Zonder · 23/08/2024 19:02

Oh for goodness sake! I didn't say they were! I hope you listen to the people you work with a bit better than this.

No - you said you don’t a diagnosis for extra time. And I’ve explained several times you do if the extra time is related to adhd.

If it’s processing difficulties that requires formal testing and concerns re adhd wouldn’t warrant that.

I am listening but you’re wrong.

Otherstories2002 · 23/08/2024 19:57

Zonder · 23/08/2024 19:03

This looks like you're turning this into a competition 😂

Nope. I am ensuring anyone reading this can access accurate information rather than what you’re sharing.

Otherstories2002 · 23/08/2024 19:58

Postachio2 · 23/08/2024 19:06

If it hasn’t damaged her education ( and getting into a prestigious university isn’t exactly saying it has) I doubt she’ll get a diagnosis. You have to prove it impairs functioning in education.

There is absolutely no requirement to show any impairment in education.

Wishfulthinkingonmypart · 23/08/2024 19:59

I was diagnosed a couple of years ago - late 30s. I haven’t taken the meds for various reasons.

I’ve told my employers about my diagnosis, and I would definitely be in disciplinary-like trouble if they didn’t know there was a genuine reason for all the things (and have been in the past, before I knew what I was dealing with). I feel better knowing I have that letter backing me up.

More generally, it’s understanding how my brain works - what motivates you is different, and I’ve stopped beating myself up because certain pieces of perfectly sensible sounding advice don’t work for me.

And that diagnosis is relevant to people around me - counsellor, driving instructor, BF, family - things make sense to them because they know I have ADHD that otherwise wouldn’t make sense.

hope that’s some help!

edit - no idea what reasonable adjustments I’d have requested in school - this is my perspective as an adult. There’s no point in thinking ’what if’ but sometimes I do wonder what my life would have been like if I’d only have known growing up. If you think your kid has ADHD I would say it helps to know. x

Crazycatlady79 · 23/08/2024 20:02

ProfessorPeppy · 23/08/2024 12:30

I agree, OP. Medication is the first port of call for treating ADHD. You can put in all the reasonable adjustments in the world and they won't make up for an inability to concentrate.

DS1 (11) is medicated in school only and it has been life-changing for him. He just got almost full marks in his SATs. Other parents have asked me how he's doing so well and my only answer is 'meds', which they don't want to hear, because they 'disagree' with medicating their own children. It's baffling.

Not everyone can take medication, even if they agree with it, though.
My child with severe combined ADHD can't take it due to an underlying tic disorder and I can't because of high BP and hyperthyroidism.
So, unfortunately, in some cases people are 'stuck' with managing via accommodations and therapeutic options.

Crazycatlady79 · 23/08/2024 20:03

HelpAGirlOut1234 · 23/08/2024 12:25

What sort of reasonable adjustments could be expected in the case of a child and an adult?

How long is a piece of string?!
It depends upon context - of which they are innumerable.