Daughter with ADHD? To accept diagnosis or not?

[NotANaturalGeordie]

Hi - first post on this board.

DD1 is 7, and school suggested Attention Deficit Disorder, which seems to fit some of her behaviour difficulties and made sense, so we got a GP referral to CAMHS. The nurse there says she thinks DD1 has ADHD (Hyperactivity) and we are waiting for a diagnosis from the psychiatrist.

BUT, several of my friends/family say I should stop the process and not let her get 'labelled' - that if her behaviour is not very difficult I should just accept that she is bored at school and will not ever do well academically. They say the stigma of the label will prevent her from doing lots of things, may lead to bullying, stop her from getting a job and so on.

I know my imaginative, creative little girl reads brilliantly, loves maths and lives in her own world, unable to concentrate on long tasks or make close friends and is now falling behind on things like handwriting.

So - to diagnose or not? I know it doesn't change who she is, but will the label benefit or hinder her? Opinions/experiences please.

A. Diagnosis will help her access support that she will definitely need.

Ignore those people that say 'labelling' will be a bad idea, they don't know what they are talking about.

If her behaviour is different from that of the other children she cannot escape a label. The question is whether you want that label to be ADHD or "spoilt/badly behaved/unpleasant child".

Dd spent 4 years in a school that refused to accept that her problems were anything other than a parenting issue. It was hell for her and she is now seriously messed up to the point of not being able to cope with school at all. (not ADHD but physical problems in her case, but the effect was the same- being labelled naughty for things that were outside her control).

No one can tell you what is the right or wrong path to take on this one.We can only tell you what happened for us. People choose both routes... Hopefully you will get a few different replies.

Do your friends not realise that unfortunately she will get labels anyway?
Here are some of the labels my son got before he got the correct one ( all by teachers)
'lazy' 'weird' 'switched off' 'robot' ' dream world boy' 'boy genius' 'odd'
All you will be doing is make sure she gets the right one. One that that will help her in so so so many ways. It provides some protection in fact ...from that same small mindedness when you are not around . It is a flag .

Not only that.. ( and this is the biggie). But a diagnosis will allow you to get support for her.

Oh blimey... Don't get me wrong... I do get that fear..Sometime ago when it was all new and raw.. I must have felt the same.
I shudder to think how it would have panned out had ds not got his dx. Because he very much needed it! :-)

I also got it for him.... Because i realised that somehow in his little boy mind, he knew he didn't fit and he knew he was different and he was beginning to turn it in on himself. He was beginning to think ' I do this ... Therefore I am a bad person' ....not...' I do this because I have asd '

And that was just heartbreaking.

No one can tell you what to do... Maybe you and she can 'wing it ' only you know if that's feasible.

Either way... Good luck

NANG

What the other respondents to you have said.

A diagnosis will open doors that will otherwise remain closed.

Do not listen to your immediate family's closed minded opinions. They can pontificate and likely also have the luxury of denial, they are talking rot. You're seeing your DD every day at close hand but you can see that she certainly does have additional needs.

A label to my mind is a signpost to getting more help. Help that your DD needs.

School can't diagnose - sensory integration disorder is often confused with adhd by the untrained eye & the strategies school would need to help a child with this are very different from those that would suit a child with adhd. Now the school have raised concerns you owe it to your child to be clear on what's, what.

Only a clinician can make a formal diagnosis, and only a fool would ignore a caring school's concerns imho. I have a friend who is frustrating me at the moment by not wanting her child to wear her prescribed specs & then complaining cos her daughter's reading has fallen behind this year. She was prescribed glasses for a reason & I've been forced to tell her this. I see no difference between the glasses and adhd - the additional support needed is different, but it's still needed if the child is to achieve their full potential.

Your friend's don't run the risk of having a child in a few years time with shattered self-esteem due to being falsley labelled a trouble maker or "naughty". Unsupported a child with adhd runs a very high risk of eventual social and educational exclusion, with support they can do just as well as everyone else - why would you intentionally deny your child the opportunity?

A diagnosis remains confidential medical info, to be disclosed as and when the individual sees fit to future employers etc. I certainly don't share my son's issues voluntarily with the ignorant & uninformed.

Why the hell should anyone "accept" their child will not do well at school - if she eventually leaves with no qualifications at all, what chance has she of a job with or without a "label" she doesn't even have to disclose in most circumstances? We don't all have to be brain surgeons, but surely every child should have the CHANCE to make SOMETHING of their life ffs? For dumb arguments that just about takes the biscuit imho.

Thank you for your replies - my gut feeling has always been to get the diagnosis so that we can get the additional support she needs. In fact, it has also been a relief for me to learn that these behaviours are something she can't help - that she isn't lazy/ignoring me and that it is not down to my poor parenting.

TBH I have been a little surprised by the strength of the negative reaction we have already seen. DH's sister almost accused me of attention seeking by proxy , my best friend has told me horror stories about ADHD kids getting rejected from school applications or funding being given to the school but not being spent on the child's needs.

Our DS2 has ADHD (among a few other things), and we had a few family members that were worried about him being "labeled" and saying "oh he's just an active spirited little boy." No. He's not. He has ADHD that literally makes it unsafe for him to be unsupervised AT ALL, with no sense of danger, a runner, and to the level in school that he needs FT 1:1. He NEEDS that support to learn and be safe.

Family and friends have the luxury of being one step removed from it all. They don't see it all, and they certainly won't be responsible if he isn't given appropriate support and does not progress academically because of that. They don't have to worry about the higher number of teens and adults with ADHD that suffer from depression or need support in their daily lives. This is all stuff that YOU as parents will need to think about...you cannot just gloss over it and ignore it.

A nurse is in no way qualified to offer you a diagnosis, by the way. HIGHLY unprofessional and could land her in big trouble. Second point - when you DO get an actual dx (from someone qualified to give you one), it is confidential. You are not obligated to share it. However, if your child needs support, I don't understand why you wouldn't move heaven and earth to make sure she gets it.

These are your FRIENDS and FAMILY?!?! Sorry, but FIND NEW FRIENDS!!! They obviously don't have her best interests at heart. But shouldn't you?

Hi Triggles

TBF My immediate family have been supportive and unsurprised by the suggestion of ADD (we are not sure about the H). Also the CAMHS nurse wanted to reassure me that DD1's problems are not caused by me - she made it very clear that the Psychiatrist was the only person who could give a formal ADD/ADHD dx.

DH's family are very sceptical, and as a rule think it's ok to leave school with no exams/low reading age etc as 'it never did them any harm' ().

I guess I'm worried about my little girl's long term future, as a high academic achiever myself I always thought she could do anything she chose and accepting the label means accepting her limitations. I know, they are there with or without the label but I do find this difficult. Of course I want her to get all the support she needs but I am finding it difficult to really accept that she needs it.

Thank you for giving me a safe place to finally admit my fears and my difficulties with this. Please don't flame me.

Pedantic on my part, but nurse should still never have given even tentative dx. Again, highly unprofessional. But anyway...

There's a huge difference between accepting her limitations and still making sure she has the support needed to progress as far as she can IMO. I feel that making sure she has the support she needs IS accepting her limitations, but in a good way. Sort of saying "I still think she could do anything she chooses to, but I accept that she will need some additional support and assistance to do it." IYSWIM??

Our DS2 is very clever - G&T in maths, very high level reading - frighteningly good memory for facts - but he still needs support to stay focused and apply things he is learning. We've had family say "no way he has SNs, he's too clever!" sigh... that's just not how it works. We've tried to explain, but they just don't get it. It IS difficult to get your head around, believe me, I understand that.

Thank you. She reads so well, and tries so hard to be good but can't remember/stay focussed on basic simple tasks. So far I have been pushing for the dx to make sure she stays on track on school but today I have been wobbling towards denial. DD2 has physical issues (reflexive anoxic seizures) and I had been worried that I have been not giving DD1 enough attention.

Anyway, the consensus is get the dx and the help will follow. I'm sure that DD1 can still be a film star/landscape gardener/save the planet......

Thx again

DS was dx with AS/ADHD

The AS is not the problem (I mean majorly to the forefront) Its the ADHD and sensory issues that play havoc, have had him excluded, miss-understood, blamed (all kids know how to push buttons and set him off on purpose as a joke). He has been trapped in classroom and denied proper excercise because his issues have been put down to plain old bad beviour and crap parenting skills.

Now with the dx its not been plain sailing or all rosy and you still have to put up a fight to get what you want. But he now has a ticket that you can call upon poffesionals to go into schools, home if necessary and advise strategies to help. There is understanding as its in a report black and white. It protects them from being set to the wayside and left to their own devices with lack of expectations.

There are RL people that wont accept ADHD, due to ignorance I was asked if it was catching, you could get told your child is teaching another bad habits. TBH the dx by far overtakes the ignorance.

Tell the friends and family where to go and look after the main priority of your family unit. No one else matters x

Accepting the label does not mean accepting limitations at all, it means accepting that there are issues, identifying them and supporting her to overcome/work round limitations.

ADHD can make academic achievement tricky, but undiagnosed ADHD makes it much harder.

as a high academic achiever myself I always thought she could do anything she chose and accepting the label means accepting her limitations

Wrong. Wrong. Wrong.

DS was effectively undiagnosed until his teens. His 'odd' behaviour was put down to emotional and behavioural problems. He was thought of as 'naughty', 'unhelpful' and 'wilful' at school, by those who thought he could and should change his behaviour. Then we discovered the cause was Aspergers and he couldn't have voluntarily changed his behaviour.

Only after his dx did he start to receive the correct support for ASD. He has no limitations and you should never believe that your daughter will do anything other than fulfill her full potential. Having a label that people can understand will qualify her for the support that will enable her to achieve this.

My DS now has a BSc and is on on course to complete his MSc this year - so he certainly hasn't accepted his limitations and neither should your daughter.

I understand resisting a Label......I did, but not because, I didn't think there was anything "wrong", I was tearing my hair out trying to understand why my son behaved the way he did at school, it was like he had 2 persona's - one at school and one at home/with family.
What I was resistant too was people who are not qualified putting a label on, I am sorry but a nurse is not qualified, from a bunch of observations to say you daughter may/probably/ looks like she has ADHD. With learning difficulties children can have similar behaviours, but different reasons eg mild ASD and mild Dyspraxia, similar bahaviours, diff cause. Sensory Processing (Sensory seeking) and ADHA.....they can "look' the same
I have been told over the years that DS "definately" has ADHD (and we should medicate) by "helpful" people, but it never seemed to fit.
He has recently been diagnosed with Sensory processing disorder (sensory seeking) and receiving specialised OT - the change at school is dramatic. We got asked at a meeting recently if we had medicated him, the change has been so dramatic.
So don't fight the label, just make sure it is the right one so you DD can get the correct help.

Oh and about limitations, a diagnosis doesn't mean setting/accepting limitations, it means you can get DD the help she needs to fulfill her potentional....

"as a high academic achiever myself I always thought she could do anything she chose and accepting the label means accepting her limitations"

I know the feeling. As an active hillwalker I always assumed that my dd would be able to do anything physical she wanted. I have come to realise that taking her wheelchair away isn't going to take the disability too.

But it is very difficult to keep a cool head and remember this when you are surrounded by people who speak as if you were causing the disability by accessing support. It requires you to look people in the eye and tell them that your child's SN isn't going to go away, and then it feels almost as if you are causing that too.

The worst was a paediatrician who told us that dd must never use a wheelchair "as it will make her think of herself as disabled". At the next appointment we left the wheelchair in the waiting room and let her crawl into his room. That shut him up momentarily.

These people just don't see the reality of the actual child you are dealing with. They compare the child with the diagnosis/wheelchair/hearing aid with their own NT children who don't have support because they don't need it, and they imagine that if you only took the label or aid away from the child, that is what you'd end up with. But of course it isn't. You'd end up with the same child, with the same problems, just no support.

Tell your friends to get their noses out of the Daily Maul and STFU. Politely, of course.

A "label" will not change who she is. It will not suddenly give her problems that weren't there. It could well entitle her to the help she needs to get through school and life in general, though.

Thx for the support, and not flaming me.

I had a meeting with the SENCo and her teacher yesterday, at which we all agreed that she was different to the other children but they did not think that she required extra support - she is within 'normal' levels for her age group in reading, maths, science, talking and listening, and is behind only on handwriting. As I would definitely be opposed to any medication (she simply doesn't need it) I rang the CAMHS nurse and withdrew her from the process. She will not get a dx.

Her school have said they support my decision and we have plans in place to closely monitor her progress - the CAMHS nurse also said she was happy for us to call her again in the future.

My DD1 is different, but it turns out that getting a dx wouldn't have given her any extra support anyway. That being the case, I'm going to remove processed foods from her diet, work on her handwriting over the summer and try different strategies for managing her behaviour. I'm meeting the SENCo again at half term in the Autumn term to see where DD1 is.

So the teacher and the Senco said your daughter would not get any extra support and you believed them........

My DD1 is different, but it turns out that getting a dx wouldn't have given her any extra support anyway

Who told you that?

That is quite simply not true!

I am not having a go at you but just remember we have all been where you are now and most of us are a lot further down the line too.

Your daughters 'differences' will become more apparent the older she gets. She will need support. She won't have a chance of support without a diagnosis.

The school she is at now may be fine but what about secondary?

Please please keep in mind that when you reach a point where you DO feel she needs more support (and if she is not making friends and is having behavioural problems at school, you will most likely need to get support for her as she gets older), statements take over 6 months to get in place AT BEST!

Your daughter is already showing signs of needing support, is her current school providing her with this? Does she have an IEP?

I don't understand. Please correct me if I am wrong but it reads to me thus;

The school approached you and said "we think..." and then, when you've approached the experts to diagnose they've had a shufty at DD's work and said "Nope, sorry about that, she's just a bit behind in handwriting"?

Why do I suspect that the school suddenly realised that they might have to implement some changes and that that could prove to be inconvenient?

If you genuinely feel that DD needs help above and beyond the normal spectrum and that her behaviour is absolutely not parenting based (don't shoot me, went through this with DSS) the I think maybe you should consider ringing the CAMHS people back and saying that you panicked and you want back in.