Should we investigate adhd assessment or anti depressants for my ds19

[Anonymous07200408]

Some advice please from those with kids who have a spiky ND profile. What I really don’t need is the usual suspects who don’t really believe in ND weighing in with scathing remarks - there are a lot on here and I don’t need that kind of wisdom please - this is very difficult for us as a family and sensitive. I am very experienced with ND and work in the field - I know my son is ND but just need some help teasing our depression vs autistic burnout vs ADHD procrastination etc. I am posting to AIBU for traffic even if the ASN boards would probably be a more natural home for this.

my 19yr old ds got a dyspraxia diagnosis in year 3 and ever since then has had various educational and social challenges. Looking back at his report from then there seem to be loads of indications of inattentive type adhd. He had a small, tight group of friends but is very socially anxious and incredibly passive. Identified as very bright from early on - effortlessly managed straight As until his final year where he pretty much took to the sofa/buried his head in the sand and crashed out in exams. Luckily he had an unconditional offer to uni and is now nearly at the end of his first semester.

He has needed an unbelievable amount of scaffolding in every way - socially and academically and in terms of life skills. Luckily he is local so I have been in and out helping him most weeks. He literally seems unable to answer text messages/ engage fully with uni support services etc - to the point he is now very far behind academically and talking about repeating the year. He has actually done really well socially and made a small group of friends who are luckily very proactive but he has already pissed them off by not responding to WhatsApp messages. The amount he has struggled has surprised us. He presents as having a low mood and flat affect and without us chivvying him to get to lectures and friends chivvying him to go out I think he would spend most of his time doom scrolling. He reports as being “ok” and I think he’s enjoying some of the social stuff but his self esteem is on the floor and always has been.

We have now started thinking that we need to do more to help - the situation is untenable. My question is, should we be investigating a private assessment for adhd (i am very sure he has asd but can’t afford an auDHD assessment)? His procrastination, inability to start tasks, dreaming, torpor, binge eating, insane avoidance all fit with my understanding of inattentive type adhd (my other son is medicated for combined type adhd so I know a little about it).

Or should we be investigating ssris for his mood? I obviously have reservations about side effects (particularly blunting of emotions - they couldn’t be any more blunt tbh) and am not sure if he is actually depressed - he doesn’t really think he is but knows something is wrong.

thank you so much if you’ve got this far - so aibu to get him an adhd assessment with the idea of trialling meds

or ainbu if you think I should look into antidepressants?

any wisdom gratefully received - he is a gorgeous, hilariously funny, self aware, empathetic boy who is suffering at the moment 🙏🏼

Things are changing. GPS are being advised not to do shared care for ADHD and other meds. My GP has stopped all shared care , even for NHS ADHD diagnosed patients like my dc.

This was this summer.
His gp in Exeter ( his Uni city) has taken the assessments on board and coordinating with adhd360.

The depression diagnosis was through Clinical Partners last year and the gp medicated from that diagnosis.

If a gp doesn’t want to take on the shared care in issuing meds then I’d change gp

‘ What if it's Refused? If a GP declines the SCA, the patient's care remains with the specialist, who will continue prescribing the medication privately (at a potentially higher cost for prescriptions). The patient can discuss options with their GP or specialist, including the possibility of a full referral to local NHS services.’

( GPs aren’t obliged to offer shared care but are not qualified to assess appropriate meds either )

We have this. She’s 19 and needs loads and loads of support.

Audhd on meds and anti depressants. Still struggling.

Yes but GPs are now being advised not to continue with shared care .Its likely it will change for your son. My dc have just had their letters. They are NHS diagnosed and our GP has always done shared care. Not now. They have been advised not to on a county and national level.

They do shared care for nhs diagnoses.

GPs are now being advised not to.

Ok thanks I’ll ask him.

So what are people being advised to do.

If he hasn’t had a letter now, there is no guarantee he won’t in the future. We were shocked to get ours. They just punt you back to where you were diagnosed. It’s fine for us as they are nhs diagnosed but obviously for privately diagnosed and right to choose there will be a cost. The infuriating thing is it will put pressure on nhs psychs diagnosing adhd so waiting lists will be even longer. I think it’s pretty disgusting to be honest .

There is nothing you can do. You’ll just be punted back to where you’re diagnosed . You get a few months notice. 🙄

Agree. My ds didn’t have years to wait for a diagnosis initially for depression.

If he gets one and he has to pay I’ll push him to do the PIP application
and he’ll hav to ask gp for nhs diagnosis. He can use PIP to pay until he gets to the top of the waiting list

Hes messaged back
No letter. Saw his GP on Thursday and nothing was mentioned

That’s so depressing. Luckily I don’t think it is the case in Scotland at the moment. I can almost understand (although I hate it) not allowing shared care for new private diagnoses but revoking arrangements is 😬😬

@Sk73djej - we were told the same. DD can either wait three years for the standard NHS pathway or she can do NHS Right to Choose.

If she is diagnosed by a provider recommended by the NHS under Right to Choose, the NHS won’t provide medication. Even though the diagnosis has been issued by a provider that they recommended…

If we get diagnosed under NHS Right to Choose but want medication, we then need to rejoin the NHS waiting list to get the diagnosis confirmed through the standard NHS pathway.

Can’t imagine why the waiting lists are so long … 🙄

It’s ridiculous. Right to Choose is supposed to be a way of relieving the strain on waiting lists by using approved NHS providers. What’s the actual point if the NHS won’t then accept the treatment recommendations from the provider that they referred their patients to?! Aaargh!! It makes no sense!!

Here’s a text we got from our GP practice this summer confirming they won’t do shared care.

Maddening.

Wondering if my DSs gp has delayed on this as it would affect so many Uni students who won’t have the money
??

Ours doesn’t do any shared care full stop now. My dc were diagnosed but the NHS ADHD diagnosis department, not even right to choose. The NHS. They won’t even do shared care with their own ADHD department, even though the wait list for said dept is insane and now going to be on double the pressure a) from those piling on to the list to get the meds free and b) because the psychs will now be handling an influx of monthly medication prescriptions and yearly physical monitoring. It’s madness .We as tax payers are paying GP salaries!😡

Agree
but who made this decision
Labour, the Medical Council or some GP union ???

I'm going to write to my MP and the one for Exeter.

Can we all do the same 🙏
bombard them with this madness.

I’m also wondering how this works when people move around.

When you move you get a nearby gp and your care carries on

If everyone has to go back to the original clinic that diagnosed them people could be travelling hundreds of miles to get seen.

None of this has been thought through at all has it
I dread to think what happens when thousands of people are thrown off their meds !!!!!

It was on radio 4 recently I think.

It goes against the latest NHS ADHD task force recommendations. You couldn’t make it up!

They’ll just do the prescription remotely. That’s why it’s so rage inducing. Our GP does buggar all in their shared care. Just press a button once a month sending it to the pharmacy and BP once a year.

Hello,
I too am a parent of ND Uni student children.
My impressions from reading the thread OP, is that he is under too much pressure and is very close to burnout.
I don’t think you realise the mental and physical effort it takes to be social when you are ND. It also comes with anxiety and rejection sensitivity. You mention he’s pissing off friends by not answering WhatsApp messages. You mention he is binge drinking compulsively to cope with going out. This is not a plus side at all. It seems like you have this goal of what Uni social life should look like and are pushing him towards the NT version of it.
If he is not only dyspraxic but has ASD/ADHD, then just managing a NT Uni social life will leave no headspace or energy for academics.

I agree as parents our goals are for our children to thrive, not just survive, but what that looks like isn’t going to fit the usual images we have of Uni life. My autistic DD, for example, her wild social life consists of a PlayStation session in someone’s dorm room, or going to a Saturday market for a coffee and a treat while browsing the stalls. She has friends most of whom are also autistic and they’d never get pissed off for one of them not answering messages for days as they know sometimes you have to unplug from being around people. They all also have no interest in the drinking, partying scene at all. Are you absolutely sure your DS is being left to discover his own feet? You mention constant chivying to get him to go out by his friends. Why is this good? Perhaps this isn’t in his best interest?

I agree with pp, look into the ASD & ADHD assessment. You can’t know what he needs without knowing the root causes and the solutions depend too on knowing whether he has additional ND. For example, the chivvying to go out and do NT uni partying could be detrimental to his wellbeing, the binge drinking to cope with is a red flag.

What is missing too is what your DS thinks, have you talked to him about his feelings and what he wants? (Other than stay at uni or quit), I mean about things like how does he feel when he is being pressured to be super active socially? How does he feel when he gets messages to answer? Does he like you visiting him every week?

Thanks
Just googled that

GPs drop shared care as part of their Industrial Action against the Government !

From
’ BBC Radio 4 You and Yours: The challenge of ADHD medication and GP shared care agreements
Press, Radio
Henry Shelford spoke on Radio 4's consumer program about the problems of GPs in England dropping their ADHD medication patients as part of their industrial action with the government. Henry went head-to-head with a representative of the General Medical Council (the medical trade union), which is organising the GPs' industrial action.
Audio Player ‘

Im speechless
They are throwing vulnerable people under the bus !

Do GPs really not have the slightest clue. This isn’t a minor pain medication you can sleep though ffs

Yep and don’t get me started on the crappy new online booking system that makes it even harder to see your GP. As a parent of audhd young adult children I really feel their needs aren’t being met and safety risked. It’s disgusting and I think the GP system needs to be completely overhauled ie they all need to be doing the same thing as instructed by the government. None of this being partners in practices and dictating what you’re going to be doing with tax payers money.

Thanks for your thoughts and I see where you are coming from. The demands for a pda kid are huge and I totally get this. I think what you are missing is that he is driving this. He is home now and has arranged to go out with his home friends tonight. I’ve rarely seen him so happy in terms of friendships - it’s something that he has been seeking his whole life and he now has a small but loyal group at home and has developed a quirky but tight group at uni. He is thrilled about this - and that’s not my interpretation- he is chatty, open and present and I think it’s largely down to this.

he wanted an accommodation transfer a few weeks ago because he wasn’t getting on brilliantly with his flatmates. He was offered a place in the same place as all his friends and he has turned it down - this makes me sad because I actually think it would be a lot less pressure for him to socialise from the same building but I haven’t said a word. He is very autonomous. I always ask if he would like a visit and never impose myself - I really don’t understand where people are getting the idea I’m overbearing - he travelled around se Asia for 6 months with very little intervention from me.

the piece that is missing is the ability to cope with the academic side of things. We had another low demand chat about it tonight, driven by him, and he reiterated that he really enjoys uni and wants a degree at the end of it. I’m just trying to help facilitate it in the best most ND informed way I can - hence why I’m on here seeking advice.

I think what you are missing is that he is driving this.
I hear you, but what is driving him? Your advice plus the gentle directioning of the scaffolding you have mentioned? I think you under estimate the influence you have on him and his decisions. Not that that is a bad thing, just saying you cannot take for granted that he is making independent decisions when you are hand in glove with the kid.

He isn’t acting as autonomously as you may think.

Low demand to you may not be perceived as that by him. Asking him if you can visit every week, would he say no to his own mother?

As I say, his voice is missing here. We don’t know if the happy, chatty face he has on when at home is down to masking and trying to reassure you- a very involved, caring, and slightly anxious mother- compared to his inner life.

editing to add, I don’t think you are overbearing but your DS has to sense the extra attention you are spending on him and he will still be wanting to live up to your expectations. This is going to affect his decisions and perhaps even to his own detrimeng. I think he needs a therapist or third party to talk to as much as you want to help him, I don’t think he can disentangle what you mean as take it or leave it advice vs what is an expectation on him.

I think as a parent of a child for 19 years, working with families around their ND children and having another ND child of 17 I know a bit about it. Fundamentally I know him and am experiencing him as happier socially than he has ever been. It undoubtedly is exhausting for him but if he has to repeat the year to maintain the social life he wishes for then so be it.

he wants to stay at university - I have non-judgmentally offered him many choices and this is his. I don’t really care anymore tbh as his mental health is my priority. Lying in bed scrolling X for the next few years is not going to make him happy and I am happy to scaffold him gently to avoid that.

he’s maybe not quite as hamstrung by his ND as others because he believes he’s capable of this despite me offering him many ways out. This weekend has been a bit of an eye opener tbh - he’s much happier than I had believed (phone calls are tough to judge because he is conscious of not disturbing flatmates and he always speaks with a flat affect on the phone anyway).

btw he had a nd specialist therapist last year and it didn’t make a huge difference.