AIBU - to fear ADHD diagnosis would give DS the excuse to let go his best efforts?

[Ohlife2020]

DS has just turned 8. We believe he has ADHD which is inherited from my family side. He wasn't too bad when he was in Y2. Teacher praised his willingness to be the "wise" and "helpful" kid. He also enjoyed good marks in maths and extra-curriculum.

But the lockdown has made him demonstrate the symptoms in a much more severe way than before. His attention is all over the place and now some sort of impulsivity of defying what he's instructed just emerged in the new school term.

I was considering to go through the system to diagnose him and seek for medication. But the pandemic right now would probably push out everything for at least 2 more years (on top of the regular 2 years waiting). He's also very likely to be seen as on the borderline, so medication may not be offered?

He always (since very young) has a tendency to go around issues/difficult topics. He usually either dodge any engagement on serious topics or just whines all the way through without taking responsibility. So we now hesitate if we shall go through the process at all, as he will then be made aware of his condition and what it represents. DH thinks it would inevitably lead him to use it as an excuse to stop making efforts or refuse to be pushed constantly to overcome the ADHD traits in a practical life.

If we are sure he would be offered med to try, or surely the diagnosis would lead to some certain effective treatment to him, we would hesitate less. But when the bleak prospect of years waiting for a diagnosis and the low likelihood of getting any effective help weighs against the possible negative effect on him, it just puts off us to take action in that direction.

I myself was diagnosed 3 years ago when I was near 40 years old. I know the impact of feeling under-achieved and the feeling that I'm always an outsider (being different). I want to give him a different life than mine, but I'm really afraid of messing it up if it doesn't work out...

Want to know if anyone regretted seeking for the diagnosis...

Your husband thinks leaving a neurological disorder undiagnosed would be character building?
FFS get him a diagnosis and start now - it was a nearly eight-year process for my child.

[quote theconstantinoplegardener]@MiniMum97 Your comment about people with untreated ADHD having a massively reduced life expectancy is interesting. Do you know why this is so? I would imagine that people with untreated ADHD are perhaps more at risk of accidental death/death by misadventure - is this the reason, or are there other factors involved?[/quote]
Yes that's right. It's also to do with not making "good lifestyle choices". People with untreated ADHD struggle to eat the right foods, they eat compulsively, tend to overeat carbs and sugar in an attempt to stimulate and because they are impulsive. They tend to use recreational drugs or alcohol to self medicate and again because of impulsivity. They struggle to maintain routines like exercising regularly and struggle to remember to drink water. They have sleep issues so don't have good quality sleep and a poor sleep routine. All of these things can add up to poor health outcomes and reduced life expectancy.

Oh and they also tend to run on stress as a way of self medicating or because their lives as just stressful as they struggle to manage life.

Thank you @MiniMum97, that explains a lot.

Can someone tell me if we diagnose privately, would NHS acknowledge the conclusion and therefore allow the process speed up within the system straight to medication and other formal supports?

Here, no. It would count for nothing, if not worse than nothing actually with CAMHS (they take a very dim view of private assessment here and that does colour their thinking im afraid). The local authority also doesn’t accept private diagnoses when assessing applications for SEN support. Neither body recognises that the woeful provision of services and enormous waiting lists are what is driving parents to seek private assessments.

In brief: be very careful going down the private route.

If your DS has ADHD it is better for him to get his diagnosis now while he is young and you are there to support him.

The assessment process will help you learn a lot more about your son's specific strengths and weaknesses. Every individual is different and you will get a much better picture of what is a "wont" and what is a genuine "can't". You may get some surprises.

There are management strategies that you and your son can learn for the different issues that arise from ADHD and similar condiitons. One of my friends' sons was assessed for ADHD at about your son's age. The psychologist determined that he did not have full clinical ADHD but he did have some issues with attention and the psychologist gave his parents useful advice and guidance which helped him succeed at school.

And I don't mean to be rude but your title makes me sad because it suggests you and your DH already have a low opinion of your son. He is only eight and already you see him as a failure and an excuse-maker unless you and your husband push him and drag him. That view of him will have a worse effect on his motivation to succeed than any diagnosis. Be careful that you (and your husband) do not project your own issues onto your son in a way that is not healthy.

@DeciduousPerennial, do you know the reason that the CAMHS and the local authority have this negative view on private diagnosis? Is it because they doubt the reliability of it, or they discriminate family who spend a fortunate going private or they just want to guard some sort of fairness? Would it make any difference if we seek for some recognise/well respected party for this private diagnosis, to add to the credibility?

@AmaryllisNightAndDay, I fully understand what you mean about seeing him as a failure. I honestly admit that I couldn't help this. It's probably coming down from the perception I had from my mum towards me. She loves me of course, yet all what I recall was she implied that I needed to be like someone else or I should do this but not that. She wasn't seeing me as a failure, but just wanted me to be better. She did all what she could to support me, yet she wasn't able to give me the kind of approval I was longing for.

And now, I'm doing almost exactly the same thing to DS. Since DS was a baby, I felt something wasn't right. Not until I found out my condition, I had all the puzzles put together to understand him. That's already better than my mum to understand me. But still, the constant worry and the exhausting parenting with a hyperactive child made it hard to stay positive and approving.

I'm trying very hard to avoid repeating how my mum parented me. And I will keep doing my best to help him discover his own strengths and the faith in his capability.

@Thinkingg, it all makes sense when you put it in this way. :) I understand that feeling of failing myself. I always believed I had more chances than I was willing/dared to put efforts in and through. A bit guilty to myself. However, DH may never understand it (or wants to), as he became who he is entirely through extreme dedication and having worked hard like no other choice between heaven and hell. He doesn't believe in "self-pity"...

@Ohlife2020
Please do get him assessed ASAP.
The longer you leave it the harder school will get for him. School will be expecting more and more from him and he just won't be able to cope (if he has ADHD) as he won't have the ability to concentrate the way his peers can so he'll fall further and further behind. This will destroy his self esteem and ruin his life as its setting him up to fail.
My ds dss and dh all have ADHD.
Dh didn't get a diagnosis until a couple of years before he died and it was heart breaking to watch him come to term with how different his school life could have been and he wished someone had given him the help, support and understanding that the boys have.
I know that the medication is not a magic bullet, but when you get the right dose of the meds it is like night and day. Dss is still on Equasim (Ritillin in the US) and at 22 it still works for him (mild ADHD) whereas ds 11(severe ADHD and asd) has just had to change to a tier 2 medication as he maxed out on the Equasim and it no longer works for him. We get about 1-2 inches growth between having to up his dose (due to larger body mass etc) and are trying to get the right dose on his new meds just now (start at lowest dose and up it until we get the right level until he grows again).
The school he is at is amazing with him and knows what is happening and coordinates with his pediatrician and I which has allowed us to put a support package together that has enabled him to be in the top group for maths and English and assuming that exams happen this year he will be sitting his nat 5 (gcse ) in computing in May. This is a p7 child who unmedicated has the attention span of a goldfish.
The best thing to do is talk to the school and get them to work with you and refer him, things go much faster and better if they are on board with getting a diagnosis as you will both be sent out questionnaires to fill in and a large part of the assessment is done in school by the educational psychologists who will coordinate with the pediatrician (atleast in Scotland)

CAMHS have a very dim view of private diagnosis - don’t see it as rigorous enough, controlled enough, scrupulous enough, ethical enough. That kind of thing.

Beyond that, it’s an excellent excuse for some Local Authorities not to have to spend money on supporting kids with additional needs because it’s yet another hoop to jump through before they’ll deign to approve funding, and a wonderful way for unsupportive schools and SENCOs to refuse to engage with you in terms of reasonable adjustments. “A private diagnosis? Ah, but anyone can get one of those, you pay them to say what you want to hear, so how do we actually know that he truly does have ADHD? Hmmm? Maybe it’s just your parenting.”

As I say.

Be careful.

It’s not all CAMHS teams and not all LAs or schools, but it’s definitely there in some of them.

To be fair @deciduousPerennial dd's camhs team were damning. But that was after they shunted us into the private sector because they refused to offer an appropriate intervention and the camhs nurse thought it was a laugh that we had been diagnosed at 17.

A factual letter to the CEO copied to our MP resulted in a request for the private psychiatrist's report and once received tjey couldn't wriggle out of it.

Word of advice - every conversation with camhs needs to be backed up in writing, entirely factual - at the meeting on x date and x time Jane Smith, camhs practitioner nurse agreed the following actions. If you do not agree with my understanding of the agreement reached at that meeting I shall be grateful for your written response within ten working days of this letter: copied to mh trust ceo, and partner at yr GP, and your MP. One really shouldn't have to resort to that but ime they say one thing to your face and theñ deny it. It seems to be cultural within the service because they seem to think all parents "mums" are intellectually inferior. and it means they can claim they offer things but the scummy parents misunderstand what they are being told. It is a bigger national scandal than Jimmy Saville imo.

Oh and you MUST send all correspondence registered because otherwise they will deny receiving it. Funny how they don't give you an email address for communication - provides a too clear audit trail for the client group.

Hi op my husband was diagnosed as an adult he had a very chaotic childhood with lots of issues so obviously some of what I say may be related to that. He didnt understand why he couldnt do things, felt bad about himself alot, would feel like he was a screw up, not normal ect. He really didnt cope with school and didnt finish school ( I'm not sure what would/ could have been done 30 years ago). He also really struggled as a teen and self medicated. Since he was diagnosed he feels better as he can finally understand more about himself and why he is struggling, it also helps me understand his behaviour. He is awaiting an appointment about medication / support ect. I think for him he has had undiagnosed and untreated ADHD and that's really hard to cope with when you dont understand and no one around you understands why you cant meet expectations/ cope with life stress ect.

And I don't mean to be rude but your title makes me sad because it suggests you and your DH already have a low opinion of your son. He is only eight and already you see him as a failure and an excuse-maker unless you and your husband push him and drag him. That view of him will have a worse effect on his motivation to succeed than any diagnosis. Be careful that you (and your husband) do not project your own issues onto your son in a way that is not healthy.

I noticed this too - he is EIGHT, please don't make him feel inadequate, it will be so hurtful and damaging.

One reason to pursue a diagnosis is that when they assess, they look for strengths (which can be considerable - creativity, originality, thinking out of the box, the ability to hyper focus where something has piqued your interest) as well as areas of weakness. That can be very valuable in helping children who have struggled to change their own narrative about themselves. My daughter was more relieved by her diagnosis than anything else - it confirmed that she really did find some things more difficult than other people, she wasn't just imagining it or making excuses. Because she knew - and so will your DS.

We are just in the middle of it all with my daughter. We have had our first hospital appointment and have just recieved the date for the second. The Doctor thinks my DD has ADHDa

Pressed post by accident.
The doctors think that it is ADHD at the moment but are also looking into the likelihood of it being Dyspraxia, my DD is 6.
I hadn't mentioned any of my suspicions to my DD until a few days after the first appointment (considering how nosey she is she hadn't asked) I sat her down and explained why she had the appointment and what it meant. I told her it didnt mean she would get a free ride, rather that it meant she would have to continue to work hard at school to achieve what we all know she can achieve, but that she could possibly get extra help to help her achieve it. We also talked about successful and famous people with it, I dont know how much of it she understood, but since then her school work has come on amazingly, she has even won some awards for her work and how helpful she is. I think a lot of it was she felt she was stupid because she was struggling more than the others in her year, now she knows it isn't because she is stupid, but because of something else it has made her feel more confident.
I wouldn't say anything to your DS yet, but start the ball rolling for a diagnosis it will help him in the long run and when you feel the time is right, sit him down and have a talk with him like I did with my DD.

@OhTheRoses the whole system is appalling. I’ve had my own fights with CAMHS. And our LA and various schools. It’s exhausting.

The reason I’m saying be careful is because OP’s son is 8 and still young enough to need engagement from school and potentially the LA for a good few years yet. While a private diagnosis may give a quicker diagnosis, where I live it wouldn’t change anything with schools or the local authority (when applying for EHCP or other funding) because they don’t accept private diagnosis (even though it’s supposed to be based on need and not diagnosis - that’s a whole other thread). We wouldn’t be able to access supplementary therapy (like meds) via the NHS either because the trust doesn’t accept private diagnosis, so we’d end up back at CAMHS’ door to get their ‘official’ diagnosis, by which point interactions with us, and information from us about symptoms etc, would be tainted in their eyes because of the private diagnosis. Either that or engage in a protracted, painful, and difficult battle with the LA, school, and trust to accept the private diagnosis.

As I said, it’s not like that everywhere. But in some areas of the country, private diagnosis is seen as short hand for ‘over-diagnosing certain things following a very cursory assessment, saying what parents want to hear as opposed to what the assessments identify, and then over-prescribing inappropriate meds’.

I’m not saying I agree. We looked into private assessment extensively.

It shouldn’t be this way. Children’s services should be funded adequately, and with a sea change in attitude, so that parents don’t feel they have no choice but to go private.

It's exhausting decidual utterly exhausting. Always worth getting the MP involved though. Wind camhs up and watch them go!

@OhTheRoses, really appreciate the "word of advise". Absolutely precious. We tried quite a few years for his speech delay. Got more or less nowhere, as his case wasn't "severe" enough to warrant any substantial support, instead it's "natural" being quietly sweep underneath the carpet.

@AsGhoulAsKimDeal, @Snaketime, thank you. What you said does make sense. Thinking from his shoes, it's getting clearer and clearer when he gets older that he's not good at certain things no matter how hard he tries. Only being pushed by us wouldn't be enough. He needs to know...

@DeciduousPerennial, it must have been really hard to your family. Knowing your child needs it, yet being refused the access to support by the very system which was supposed to care about. I dread of having to go through the process, but really can't go around it with magic. I will do more research before seeking for private. I have record for my own diagnosis in the system . Hope that would help in certain way - part of the reason why I bothered to get diagnosed at nearly 40 years old.

Different as it's ASD, dyspraxia and dyslexia, but being diagnosed at 8 has been a positive thing for DS. He understands that he's wired a bit differently, the strengths that gives him and why he finds certain things challenging. It's not an excuse to give up, but it is reassuring when you know why something is harder than average and that it's not about intelligence/ effort/ behaviour.

He masks well and school don't really see the ASD... yet... but the diagnoses are there for when he gets to secondary and the environment and expectations change.

Mind you, this year I've been wondering about 7yo DS2 and his focus, either in his own world or really into something, and he's very physical, and tactile...
The child that missed last year's school photo for failing to respond to umpteen requests to join the right line in the hall because he was day dreaming...

I really worry that you are focussing on getting your DS diagnosed and on medication as a way to “ fix him”. You speak about him so negatively, very little positivity at all. Do you think that he may be aware that you have written him off as totally hopeless unless he is pushed constantly, could part of the problem be that he has given up trying because whatever he does is not good enough or sustained enough? Medication is not a magic cure my DS has ADHD diagnosed aged 9 so I have experienced this first hand. Medication can have side effects it can affect weight gain and growth, which is why the child must be carefully monitored, it can affect sleeping so that they have to be on another medication to counteract that. It can cause them to be hyper emotional and according to my DS makes your brain feel muzzy and not feel like your real self. Whichever route you go down for diagnosis the doctor will have to believe that it is in your son’s best interest to be on medication, they won’t prescribe the medication just because you think they should.
My DS’s ADHD was very severe and as a teenager he refused to take medication, short of physically assaulting him to take the medication there was nothing we could do. Even at his worst, and things got very bad at some points, I could always find some positivity which is why your words about your son at the moment seem so harsh towards such a young child.

If you ever find yourself saying "he cant help it/that's just what he's like" then you've fucked up.

Um no, that's not true. I had a lot of "he can't help it now but he can develop and learn". Sometimes parents put their children under too much pressure to behave normally/well right now and that just sets them up to fail. It is a balance and it is a difficult balance to get right.

Occasionally the school would put DS into situations that I would never have dreamed of (so I didn't warn them off) And then when it all went tits-up and the complaints came home I would think "how the fuck did they expect him to cope with that, what did they think was going to happen?" Of course I did not say that, I had to be very diplomatic and back the school up with whatever consequences they decided on, especially since they were usually very good. But it is hard to get it perrfectly right all the time and unrealistic expectations don't help.