I am wondering if it's always worth getting a diagnosis/label

[LumieresForMe]

2 things really made me think.
I very likely have ME, have had for years and regularly struggle with it. But I have never needed a diagnosis on the ground that apart from, learn to manage your energy, there isn't a lot a GP can do.
Dc2 has just had an assessment for AS and after two years of hoping for a diagnosis, he came out 'absolutely fine' even though he still has meltdowns etc etc.
in my case, I've never thought a diagnosis or label would help me in anyway. I'm self employed, my work is scheduled around my own abilities. DH knows I can't do as much as I would like.
In dc2 case, I would have loved a diagnosis as an acknowledgement that dc2 does indeed struggle even though it probably doesn't appear that way from the outside/at school. And the label would have been a way in to explain to him how his thinking is different.
Not having this long awaited diagnosis made think though. Does he really need a label? Do I? What are the benefits of having a diagnosis when you know you aren't going to get any help (which the case both for myself and for dc2)? What could be the benefits of NOT getting a diagnosis?
Just trying to get on head right there, wondering if it's worth fighting for another diagnosis, with all the issues/efforts it involves or if things would be better left alone.

alarm CAHMS diagnosis is 'everything is fine' so by much more forward than before.

Seeing what I gave been reading so far, I'm not sure I want to bother anymore tbh.

OP, do you mind me asking what your symptoms are? I've been wondering if I have ME (chronic fatigue syndrome - right) but I'm not sure i believe in it or if I'm just being dramatic and lots of people are as tired as me.

I'd feel a bit foolish going to the GP and insisting I'm tired-er than most people, because how do I know how tired they are? Maybe they suck it up and I'm just being a baby about it?

OP, I gather that there are two parts to Child mental health, and CAMHS have no medical training.

I am just saying that as what we have been diagnosed with has links to autisim and people with our condition have wrongly been in the past given Fibro/CFS/ME diagnosis's.

My guess is you really need the child mental health side that have medical training, not the psycholoigists as a first port of call of the two.

just be careful with ME/CFS as they think a third are misdiagnosed

I agree oneineight, that is exactly why some chikdren like my dd cannot cope in mainstream education, mainstream schools cannot cope with some SN. Labels have their importance, it gives vital information on the child's needs. Inam so glad dd is in a specialist Autistic school, with staff who are specially trained with small class sizes.

I would say Luggage's post say a lot more about her personally than the teaching profession as a whole. That's just not my experience. I read her posts looking like this -->
please do not think for a minute she is speaking for the profession as a whole.

Back to your original question, Lumieres, I think it's really interesting, and prompts a different answer from me, depending on if it is the adult with ME or a dc with an ASD. I work in this area and have listened to / read about a lot of adults who have been diagnosed as adults / late teens, and about what a relief it has been to them, to understand that they may have their brains wired slightly differently, and that the uneven developmental profile they have is because of this and not because of any negative thing about themselves. It's given them an area to research and things they can try to help manage their lives more positively.
I tend to say to parents who are wondering how important a diagnosis is, that if it were me, or my dc, I would want to have the diagnosis. If the condition isn't impacting, then you don't need to tell anyone about the diagnosis, however, when life isn't going well, you have it already and don't need to start a year long assessment process at a time when things aren't going well. I say it's a bit like putting an umbrella or mac in your bag - on a sunny day, nobody knows you've got it, but when it rains, it's good to have it with you rather than having to run back to your house or car to get it.

I think it's different possibly with the adult with ME though. Especially as you are self employed so not expecting your employer to be making adjustments. Having had my travel ins premiums shoot up about 150% because I was diagnosed with cancer in the last 5 years (even though I'm clear now and not receiving treatment) - I can understand the need to be able to say "No, I've not been diagnosed with.....".

Well, if the test is coming back negative maybe DC has something else? There are other disorders that can also involve sensory issues and meltdowns.

But with my case with LD's, it helped to get diagnosed to confirm I wasn't just imagining it or being dramatic. But in a more practical view, the medication for my adhd didn't particularly help, occupational therapists for sensory issues are seen as elective (and therefore out of pocket), and there's not much you can do for dyscalculia. So no labels didn't really do anything.

What did help though was downloading apps to help manage finances, keep me organized, using calendars to schedule, having colleagues send emails, cleaning the house and organizing it in an easy way, splitting up chores between me and DH that played to my strengths, etc...

As a PP said, a label doesn't really give a good picture about what you need help with anyway. If you know one person with AS/ADHD, you know one person with AS/ADHD.

sorry, rather long post

luggage I know, trust me. You know how you think you can spot 'those' parents? Well, parents can spot 'those' teachers. And I'm quite sure that none of my dc's teachers are as unprofessional as you are portraying yourself to be on this thread.

I was at luggage posts, I am sure there are some caring teachers in the profession who do care and try their utmost to help all their pupils.

YouMakeMeHappy - ask about CFS - Chronic Fatigue Syndrome. Those words may get a slightly better reaction.

My old GP was quite dismissive of my CFS, SADS and general blechness. But I am going back to a GP who diagnosed my anaemia, so have better expectations of support.

Keep a diary, see if you can identify triggers and patterns. I have 2 lifestyle patterns, I can either drink alcohol, but cannot exercise, or vice versa. I also have to be careful of late nights, disrupted sleep patterns, I can be insomniac for months at a time. If I drink when I am in no drinking mode I can sleep for 2 - 3 days after a single drink. Exercise can knock me out entirely. But if I am in 'can exercise' mode, gentle regulaer exercise is really helpful - not easy as I was an aerobics instructor and competitive sports bod prior for a living and fun.

BUT I did my degree and Masters in that condition, worked as a fitness instructor to pay my way through Uni, have been very sporty (until the anaemia kicked in, that stopped that completely). So it is possible for some to remain active and relatively normal.

I'd just say luggage, as you may have guessed I understood what you meant and consider myself lucky not to have been lightly toasted with my posts as I said much the same but about a different setting.

happy I have been tired as 'can't keep my eyes open' when I just stopped for a minute. Lots and lots of sleep (even though I am aware that for some ME sufferers they actually can't sleep at night)
Any extra effort knocks me down for days.

Aches in muscles and joints, esp when I do too much.

Lack if concentration, issue with memory.

A lot if it I don't feel too badly atm as I am very careful to manage my energy/don't work full time. But a gentle 1~2 hour walk this weekend (labelled as an afternoon stroll for most people) has left me unable to do a lot for the next few days.

I've been wondering this myself. If I got an AS dx for dd1, it wouldn't make any difference to her educationally - she is high-functioning enough that she wouldn't need 1:1 or anything like that.

But her difficulties are social, and if things get bad for her later on (she is still at primary school now), then teachers will get the brunt of it, and would - or so I imagined, anyway - want to know what's behind the upset. Or would they not? Will they just put it down to me being one of 'those' parents?

I also imagined that, if they knew dd1 can get very overwhelmed by being surrounded by people for long periods of time, they might accommodate her with a quiet place to go at lunch or play time?

Really, I don't want 'help' as such, just understanding for my child. But am I making things worse for her by pursuing diagnosis?

luggage I do not expect you to do anything differently because, thankfully, it is different out of mainstream. You are not qualified to re-diagnose/undiagnos a condition such as 'autism', ASD (autistic spectrum disorder), AS (autistic spectrum), Aspergers (higher-functioning autism) - did you see, the word autistic is in all of those -because there's more to it than your limited knowledge. Really pleased my ds (and me!) are away from teachers like you that think a professionally diagnosed condition is because of 'parenting' deficits.

back that's an interesting pov. Thanks.

princess YY what if it's something else??
That's one thing I found extremely hard. I would have expected the specialist to be able to an assessment and tell me 'we'll it's clearly not x and y. It might be A or B. We will check those. Well having done all that it is A or actually it's C'
But instead I found that I had to make a guess as what it could be, AS, have him assessed, which took years to go bs onto the drawing board with no idea where turn to.

thankfully, it is different out of mainstream.

I don't think you have read my posts, I am largely talking about out of mainstream. I teach in both, but mostly SN

Luggage I have two dc with ASD. One in mainstream education, one HE because he couldn't manage there. In your posts you've confirmed everything I have always thought about teachers and how they perceive my children. It's not your fault, it's just not possible for one teacher to make the required allowances and implement the required practices to deal with children with additional needs within a class of thirty children. I can't manage it most days with my own two!

I just wish everyone would stop lying to us about inclusion and the efforts they're making because it's BS. It's impossible to do it consistently the way these children need and if everyone would just admit it we start trying to come up with solutions.

And my experience of specialist autism schools....well... I wish I had the time to start!

Thanks for the reply OP :)

nicki yes I found that too. That teachers are so snowed under thatcher can't possibly spend the necessary time to accommodate each child with their own special needs.
I am very happy to acknowledge that.

Working on behalf of kids with additional needs and having them myself - Labels are worth pursuing to have if you need them to access resources, you don't have to use/disclose them if you choose not to. A lot of resources in these cut-back times are now restricted to those with the specific label diagnosis such as Autism, and as such can offer you additional resources to select from for your child's needs.

Having a diagnosis myself of Hypermobility/POTS it helped to get reluctant employers to make arrangements when I worked full time, without that label I'd have struggled. It gets me taken more seriously when I walk into A&E in mid crisis and cues people with where to start. However a consultant wanting me off his books ASAP has managed to slide CFS onto my notes and refused to remove it, and CFS can be used by medics as the pitch-shot into the waste basket as a patient. I don't have CFS, it's not a useful label to me in any way, and will actively work against me as it just justifies 'no further action' along with the medical stigma of 'probably neurotic/psychological in origin'. Despite heart rates that have caused panic among medics on occasion.

So it's a very mixed bag and I have every sympathy with your being unsure!

An NFA via CFS for POTS? Sorry about the letter madness.

And how do you complain about consultants? I had to give up, it was too exhausting - you're back to that 'opinion' thing again.

But POTS is measurable, I know hypermobility can be discounted if they choose to - that's what my fight was about and I will be following it up again (25 years on) next month.

Can you fight that at all?

Who are you fighting Nomama?

Have you been to the hypermobility unit at UCLH?