[Closed] Mental health and autism help please?

NOT a mental health pro here 😉

Its certainly worth looking into. 3 different antipsychotics is a lot

and that she’d advise testing for autism as he may have been mis-diagnosed. her recommendation would be to start from scratch again with meds, as hes no better than before, worse if anything.

Sounds a reasonable approach. Can you spend time with him? Coming off antipsychotics should be done with caution and gradually and he will need support. As you have found out mental health services are somewhat overstretched.

There are standard autism testing tools available online.

I'm sorry to hear about your son, it sounds like a tough situation for everyone.

I know there's quite a few of us here on the spectrum, I'll refrain from offering any autism specific advice since he hasn't been diagnosed, but it's definitely worth seeing a professional about it. Online tests can indicate you might be on the spectrum but a lot of people have some autistic traits.

I can't comment on the meds but one thing I would like to say is an autism diagnosis isn't a treatable condition. There isn't medication for it and it often overlaps with other conditions, so you might do this and find doctors still recommend his existing medication. Do this with the mindset that whatever the diagnosis is, it's information to help you understand what's going on in your son's head.

Along with ASD traits have you looked at ADHD traits ??

I have a son with both, and there is a direct crossover.

😥

one thing I would like to say is an autism diagnosis isn’t a treatable condition.

I wanted to say that and couldn't think how to word it.

Say you get a diagnosis - what then? It might give you the peace of mind of having at least a partial explanation for his behaviour, but it doesn't get you any closer to resolving it.

Revising his medication is a good idea if what he's taking doesn't seem to be working. If he's on three lots of antipsychotics and still feels the need to self-medicate with horse tranquillisers, a trip back to the GP might be worthwhile.

thanks

yep, we've been talking about nothing else for the last day or so, and what it might mean. and yep, we have a grandson with autism too and realise its not 'treatable' as such, its more about understanding why he may act like he does, but also if he realises he may not be paranoid schizophrenic/psychotic, he may want to try and come off the meds for it.

personally id love him to start from scratch again, i hear anti-depressants are sometimes used to assist with autism, id far rather those than the cocktail of knock-out drugs that hes on now.

im still trying to get hold of him to discuss this, i fear tho that these meds are too ingrained in him and he wont want to stop them. obviously i dont know whats in his mind tho, he may after all have been diagnosed correctly, but i hate all the meds that he takes as they just stop him functioning correctly and he just seems to walk round in a daze.

it could be a turning point tho, i just hope he gets on board and plays ball.

Along with ASD traits have you looked at ADHD traits ??

nope, early days yet but ill mention this too. im also trying to get hold of his CPN to discuss this, she seems approachable with his best interests at heart. have to say some of the meetings we've been in we dont get that feeling about some of the doctors, they just seem to want to prescribe more meds. they obviously know faaaaar more than me to so i shouldnt be so dismissive.
saying that tho, he IS a difficult character and rarely 'goes quietly'.

thanks for your advice, much appreciated.

IANA MH pro. But.

There are some thorny knots to untangle there. I would agree that if the existing cocktail is doing nothing for him and he is self harming when on them, then the nurses suggestion of removing it and getting re-diagnosed seems to have much merit, although that will be a rocky road to getting off what may be seen as a safety net.

Some GPs are not very good with mental health; the NHS is patchy at best with MH problems, IME, differing diagnosis and differing ideas about how to solve things seem common and you may just have to keep hacking away until one solution starts showing a bit of result.

The autism diagnosis may help him far more than it helps you. It's absolutely worth a shot. Some of his issues may stem from sensing himself being different and not knowing why, leading to depression and more withdrawal and you've already covered the rec pharma problems and self harm.

Some issues close to my family here, thankfully less extreme end result and we came back, hopefully you can bring your son back from where he is now to a better place.

All the best.

Can't answer regarding an Autism link but my ex has also been diagnosed with the 3 mental health conditions you mention (she was last sectioned a couple of days ago) and it's a nightmare trying to deal with it so you have my sympathies, she uses speed regularly to. My situation is complicated by the fact she blames me for it most of the time (when she gets really bad she's convinced it me creating the voices etc. through technology as I work in IT...).

She's sectioned at the moment so I'm catching up on some sleep (otherwise she calls me at all hours and if I don't answer turns up outside my house in the middle of the night shouting abuse or banging on the door, she knows where I work to but thankfully hasn't shown up there yet). Have had to call the police a few times when she's attacked me but never end up making a statement as being locked up/going through the courts isn't what she needs.

There just doesn't seem any help available in between the local crisis team (who are great but don't seem to have any powers/remit beyond visiting her if she agrees and checking if she's taken meds but that relies on her telling them the truth) and the police being involved. Not sure what else could be done really as I guess you can't force someone to engage with therapy (and I haven't managed to convince her to try it) 🙁

It's probably more accurate to say that autism isn't curable. It is treatable to varying degrees, depending on what outcome you are hoping for.
There is a huge overlap between ASD, ADHD etc and other MH conditions and it is really hard to unpick them all to figure out what's what. If your gut says he could be on the spectrum ( and let's face it, you probably know him better than anyone) then pursue it. Getting someone with experience to take a look can't hurt - the other treatments he's been on for a fairly long time don't seem to be improving things much.

Good luck.

I've not read all the above in detail.

My wife has worked in special needs schools for 15 years and is now executive head of one.

My take-away from talking to her is that an autism diagnosis itself isn't really valuable *unless* it opens up access to other services (in her case via an EHCP).

I also believe that EHCP's now run up to age 25 so it maybe worth exploring this with a local autism support group (most areas have them).

what I woudl consider Autism as is a series of responses to stimulii (or indeed a lack of them). Most of the work with helping children and adults cope with their condition is understanding what triggers anxiety and 1) developing coping strategies 2) learnign how to avoid the situation that trigger certain responses.

It's a long road but you've been on that for years.

re: the prescription drugs - just because he might be autistic doesn't mean he doesn't also have a specific MH issue that they might help with.

I think I'm saying explore the autism angle in terms of responses to situations and so forth but someone can be autistic and also have mental health issues so don't abandon the MH treatement.

I have aspergers and bipolar and adhd and used to self medicate and have been sectioned. If he has autism or adhd that's important as he may be more anxious than average ( from aspergers ) and takes drugs as an escape. He could be taking the coke to overcome the effects of feeling like a zombie on his current meds or as he has adhd he may need to be stimulated. He may get fustrated if he has any of the conditions mentioned as he will be different to other people and can probably not handle it and may have low self esteem. There's not much that can be done for aspergers although a positive result from an asd test may explain his actions and he could gained insight from this for you all.
Doctors may refuse adhd meds as he has mental health problems. If you are austitic then the anti pyschotics and also anti depressants ( esp these ) will act differently on him than with your average person although not all medical experts in mental health are aware of this. Sounds like he should have an asd test if he is likely to be and this needs to be known by the mental health physc in hospital. A gp will not have this level of understanding and as he is sectioned the only person in the world know can help him is his mental health consultant in hospital. If he has bipolar then he might get mood stabilisers .Bipolar may get in him low moods and he is taking drugs to overcome this. I take meds and am fine now with no mental health issues ( as long as I take my meds ) good luck.

This deserves a longer post than I can manage on my mobile...

My friends lad (20 now) had a psychotic episode related to drugs a few years back.

Now on meds and functioning but recently been brought up by 2 practitioners that he has many of the classic symptoms of autism but he's never been tested for it. Still waiting to be as far as I know.

Ive known him since a baby, he grew up with my son and looking back..... I don't know why it never occurred to anyone including me before!

feel free to pm me for a bit more detail.

What a tough place for your son and family to be in. There is a lot of good advice here as always. I would suggest that a strong indication of autism or autistic character traits can be very helpful in providing good support to your son. For example, it could help to provide routines and structure that help your son to feel more secure thereby helping his mental health. I hope that your son and your family are able to find some more of the support needed.

My situation is complicated by the fact she blames me for it most of the time

I think that's a pretty common reaction. I had a now-ex that spent her entire life blaming anyone and everyone for everything that was wrong in her life. Eg, untidy house, that was her housemate (which became demonstrably untrue when said housemate moved out and her new place was always immaculate). Abusive father, abusive ex-boyfriends, how much of it was based in truth I have no idea. I've lost touch with that entire group of friends now and I have little doubt it's at least in part because she's told everyone who would listen just how much of a bastard I was.

never end up making a statement as being locked up/going through the courts isn’t what she needs.

It might be what you need though.

And change your phone number.

Autism and serious mental health disorders such as schizophrenia is a difficult combination, and something we see more often than youd expect. What makes it particularly difficult is establishing if its a genuine psychosis .. add in a PD and illicit drug taking to the mix, then you dont know if its an Autistic presentation - behavioural PD - a psychosis - or drug induced!

If he new to the anti-psychotics then I guess they still seeing what & how much for him specifically. And this will be made more difficult if he takes illicit drugs while the Psychiatrists are waiting to see results. I expect he was better when he was discharged off section - and deteriorated following the ketamine?

Clozapine is the gold standard of anti-psychotics. And one that really seems to work for a lot of people. But because of the risks its the last line of defence.

Good luck - hope things improve.

thank you all for the advice and experience, its appreciated and noted.

I don’t know why it never occurred to anyone including me before!

.....is exactly how we're feeling right now, the more we read on autism the more it all makes sense and we're hitting our heads with our palms.
it feels like a eureka moment, light at the end of the tunnel, although we do need to be careful not to get carried away.

spoken to the boy on the phone and hes willing to engage in dropping meds and trying this theory out, although itll obviously be tough for him to come off what hes been on for a long time. his heads also in a better place knowing we're all going to fight this together and that he can come home after a while rather than the 'sorry mate, we've had enough now, last straw, jog on and stick whatever you like in your body, you'll live wherever they put you now' message we gave him after the last incident.
he's also got the incentive to stop harming himself as we've told him that he only comes back if he stops that and we all work through this together.

the place in darlington where hes at now seems spot on, a world away from the local MHU here that seem to just pump you full of more drugs and is an awful place to visit. im hoping he stays there a while longer while they monitor a drop in meds, altho its private so will be costing the NHS a fair whack and im sure theyll want to transfer him back to the local MHU again asap.

feel free to pm me for a bit more detail.

will do mate, cheers.

thanks again for your help.

Most mild autism doesn't need to be treated or corrected. It just needs the person to stop trying to be "normal" and stop being near people who try to make them "normal". Without exception, all of the issues arrising from my ASD have been due to external pressures from people trying to make me be like them. Literally every workplace wants a "team player" rather than one exceptional genius who can work alone and achieve better results than 5 "normal" people working in a team. If it is ASD then drugs are almost certainly not the answer, unless the question is "how can we make these people leave the doctor's surgery quickly and cheaply?".

Looking at the medical profession these days (and I am certainly not part of it so don't take my word as anything but opinion) if you're given a drug and nothing improves in 6 months STOP TAKING THE DRUG. Don't add more drugs, instead start asking more specific questions about the treatment and why the doctor thinks it's going to work. If they have pens, post it notes, etc. with the drug brand on in their office find another doctor immediately.

@sadexpunk I think you hit the nail on the head with your holiday, he was away from the stresses, expectations and responsibilities of home and actually able to properly relax. As @lustyd said "It just needs the person to stop trying to be “normal” and stop being near people who try to make them “normal”. Without exception, all of the issues arrising from my ASD have been due to external pressures from people trying to make me be like them."
+1
I also think that the medical profession and third sector are more geared towards making people appear normal and making money, rather than addressing the individuals needs

The psychiatrists will not be trying to treat the Autism, but the psychosis and self harming behaviour. I feel there would probably be better results from trying to understand the BPD because thats what may be influencing the self harm and drug taking.
People with BPD have difficulty managing their emotions, so when they become stressed or emotionally charged they do things as a coping mechanism that can often be self destructive.

the doctors gave me 3 months on a med to try it before moving onto something else.

Getting an autism diagnosis would unlikely change any of the prescribing for the schizophrenia. 3 anti-psychotics is a bit much but it depends what the doc is expecting each AP to do. Often medications have multi-use so may not be used for the psychosis, but sometimes to help with negative symptoms such as lack of motivation, anhedonia, lack of spontaneity etc. Some APs are sedating, others more activating. BPD isn't usually medicated per se but sometimes benzos can help short term as PRN (as required not regular meds) when managing a crisis.

Clozapine is indeed "gold standard" as long as you can deal with the 18 weeks of blood tests while the dose is titrated up to a tolerable efficacy. There are plenty of issues with clozapine, too deep for here.

From my experience, anyone who WAS taking ADHD meds has them stopped when they've been admitted to a psych ward, as overuse of these meds CAN make people psychotic.

I take adhd tablets and AP drugs although some people get refused.

Out of interest how do GPs decide which anti-psychotic to prescribe? Is it a case of they'll generally have a preferred one and only if that's ineffective would they try others? Or is it NHS Trusts that set the first option to use? My ex is on Aripipazole, but its never seemed particularly effective (if she took it in the prescribed dose it would zombify her a bit so she started only using intermittently when she felt she needed it - which I doubt any AP is going to be effective if used in the same way but something that didn't zombify her in the first place, when using it as prescribed, might be a better option). I did tell her to ask to try a different AP but I don't think that went anywhere.

I might be wrong but I think it's only consultants why issue AP drugs. GPs do not have enough knowledge although might not stop them.

bit of an update, and hopefully some advice from any lurking professionals maybe?

whilst we were on holiday he started getting frustrated again at being so far away, hes not seeing anyone he knows and feels lonely.
he said he wants to be home, me and the missus had a chat about it and agreed to have him back (again) for another trial.

we've been talking constantly to the nurses at darlington, who are pretty scathing of the lincoln CPN and her team. theyve tried contacting them, they dont return messages, and the CPN was just 'blunt and unhelpful'. she told us that rehab referral would be impossible from home, then said she'd do one, then apparently went on leave and didnt do one.
she said they wouldnt do an autism test referral, then backtracked and said ok but itll be 18 months maybe unless we go private.
darlington also picked up on the fact that the boys been on anti-psychotics for years now, and theres been no checkups during that time, which they say is disgusting, as one of the side-effects is literally death.

heres one for the pro's.
before we left with him last night, they went through a questionnaire with us, saying that this should help us with the autism referral. its an ABAS-3? he scored quite low (another sign of possible autism) so they said keep it, dont let anyone have it, its your assessment to show people and keep banging the drum. let them see photocopies, but dont hand it over to anyone. they told us that its nationwide, all counties use it, so itll be helpful and set the ball rolling.
we spoke to the CPN this afternoon who says its worthless, as each county does their own version of it and they wouldnt use it.

we've set up a meeting for friday with her, we've expressed our dismay at what we have found out about his treatment over the years, including recently, and have told her we wish to put in a complaint.

we have also been advised to ask for a review with a consultant psychologist/psychiatrist.

as ever, all advice gratefully received, we'd like as much information as possible for friday.

bit of an update and a plea for a bit of advice please, you may have to give it privately tho.....
as expected again, lincs have been rubbish. the CPN didnt put in a rehab referral before going on holiday, darlington had to do it. hes now been for an assessment to a place 40 miles away but they have decided he doesnt fit the criteria for rehab as 'everything they provide, he could get in the community'. i asked why anyone would ever qualify then, but they cant breach patient confidentiality etc etc.....

theres a long waiting list for x, itll be a few weeks before he can see y, nothings happening and hes getting frustrated again. in fact we all are!!

i realise nobody here can give specific advice, but he wants to drop his anti-psychotic meds to start with and he/we want to do it asap so hes not (as much of) a zombie.

currently hes on......

Quetiapine 500mg (we've dropped it down to 400mg as a trial, no ill effects) - anti-psychotic
Metazapine - 30mg - antidepressant
Respiradone - 4mg - anti psychotic
Clanazapan - 4mg -anxiety
Premephroziine - 50mg - anxiety
Haloperidol - 5mg - anxiety
Sodium valporate 800mg - mood stabiliser - (down to 600, no bad effects)
Zopiclone - 7.5mg - sleeping tablet
Presyclodine - 5mg - aching due to anti-psychotic

i do realise that only his doctor (what doctor!) can officially alter his prescription (in a few weeks time probably), but if anyone can give me a rough 'probably be ok' on dropping another 200g of quetiapine for now, from 400 to 200 then we'd be grateful. we cant drop in smaller increments as theyre 2 x 200.

as i mentioned earlier, a PM would be fine, even if just to say NOOOO, wait for the doc!

thanks

That looks a heck of a lot of meds to me, but then IANAD. I think the bigger problem you'll have is as long as he's still taking recreational drugs (as per your OP) it's going to be difficult to gauge how effective the meds are and whether any changes to behaviour following changing the amount of meds is down to that or the other drugs

Ok my experience is with the elderly but thats shit loads IME I am not a doctor nor do I know anything about your son bar what you have told me on here.

thanks, FWIW i believe him when he says he hasnt touched recreational drugs since the original post.

As you have probably found out, anything ASD is incredibly underfunded. Child assessments can be 2 years and some adult assessments 2+ years if at all as some are being refused all due to funds, depending on where you live. If you go private you need to check your local support network will recognise the outcomes. If a diagnosis is given, that will be it. Official support is largely nonexistent. There is quite a good private support network but that is also regional. Stay clear from info from the US, there is a big move to “cure” autism there, which is slowly growing here but not on a large scale. ASD needs to be understood nor cured or treated. Having a diagnosis can be very helpful to the individual and family and friends but it is also worth remembering whilst some traits are shared, people who are autistic also vary as individual as everyone else.

bit of an update......

i decided if hes staying at home for now then i want full control over meds. he wasnt happy about that but i insisted. this was a catalyst. he admitted he'd taken a months worth of meds in just a few days. wouldnt go to A&E, he wasnt as bad as last time but we decided its going to have to be a bit of tough love now.
so.......we've got his meds. we're not witholding anything, but theyre locked away and being taken as they should. as he hasnt got any of the ones hes gulped down remaining, he cant have those anyway so the cocktail of 9 ^^^ is down to 4 at present. for those in the know, what its now scaled down to is......

sodium valporate 600 mood stabiliser
respiradone 4mg Anti-psychotic
quetiapine 400 Anti-psychotic
matazapine 30 Anti-depressant

hes really going through it, his eyes roll and twitch when hes anxious, his face muscles lock up, hes having to wear sunglasses cos hes embarrassed abut his eyes, its awful to see......

ive just insisted and taken him to the GP (or nurse practitioner anyway) just to make sure there was nothing more serious going on. he was lovely and has made an 'urgent' referral to the psychiatrist, and made arrangements for his MOT.

im aware that he should be coming off meds gradually, but as he cant take 5 of them til next prescription anyway, we're just hoping that they slowly leave his system and we wont re-introduce them, but we're seeing the community pharmacist on wednesday to discuss that.

CPN has made another referral for rehab, alongside a strongly worded letter from me (yeah thatll scare them!) and im awaiting advice from PALS on how to proceed with trying to discover why this over-prescribing has happened, and to make the relevant doctors accountable for their actions. im not after apologies, compo, nowt like that (and i wouldnt get them im sure), but if it saves other poor sods from being prescribed a shitload of meds unnecessarily then id be happy with that.

another thing we're struggling with is diet. hes eaten nowt but shit for weeks, now not hungry at all and is barely eating anything.

autisms on the back burner for now, just want to sort his meds out first.

hes a worry is that boy! :-/

cheers

Second opinion through a private one off consultation with a top neuropsych?

If you can’t afford it, I will chip in 25 percent, I’m sure others will do the same.

People with BPD have difficulty managing their emotions, so when they become stressed or emotionally charged they do things as a coping mechanism that can often be self destructive

This.

A very good friend of mine has BPD. I have to have a very thick skin with her as the slightest thing she perceives as a dig at her sends her into a right old spin. I’ve just learnt to ignore it and give her a hug when she’s over it - she recognises that these days, so our friendship is a lot more jovial and relaxed now. For her, the anxiety after the mood swing once she’s realised she’s been off is the worst part. I just try not to judge her.

She spent most of her late teens when we were growing up sleeping on her grandmothers couch - she has a lot of get out of jail free cards as far as I am concerned.

Second opinion through a private one off consultation with a top neuropsych?

whats the ball-park figure for somethings like that?

and excuse my ignorance, but what would a one-off consultation bring? dont you have to keep going for a few sessions, and even then no guarantee of any improvement? if i could guarantee that something like that would be a game changer, itd be a consideration but im not clued up enough to know what itd bring.
and thank you very much for the offer of help mate, really appreciate that. it wouldnt sit well with me tho knowing ive just booked crete for next year, fancy a second holiday too (bloody need our holidays!), and then accept help elsewhere. there are far more deserving cases than us who really cant afford what they need.
like i say, very much appreciated tho.

When I had a private physch. the inital assesment cost about 1500. Follow up appointments cost about 500 pounds for 1 hour and went down to once a year. So not cheap. A hospital may offer private though to speed the process up.

Private neuro (Not a psych) for me after a weird central balance issue was about 500. I’m sure we can get a fund going though. I’d like to help start it, I feel really sorry for the OP.

update time, and a bit more positive....

the boys doing well. had a rough week or two getting some of that shite out of his system, but has settled down now.
we went to see the pharmacist, who agreed it was too many meds, and has formulated a plan for more reduction. the plan reduces his respiradone down to nothing over the next 3 weeks, then start on the sodium valporate i think. she actually upped his metazapine from 30 to 45, but thats just for his anxiety, so we're comfortable with that.

CPN has now gone on maternity leave after promising she'd introduce him to her replacement and failing. she had a face like a smacked arse in the pharmacist meeting, it took her all her time to look at us, probably because we criticised her lack of action. didnt even say goodbye to us/him. no loss, we feel we're in this on our own anyway at present, and i actually feel like we can do a better job for him as we obviously care more.

hes had his MOT, no concerns, cholesterol a little high but thats not surprising the amount of crap he eats.

we've also set the ball rolling with a complaint. by accident actually, as i was just generally complaining about his treatment, i was asked to fill somethings in, and its actually an official complaint, done through PALS? (patient advice and liaison service?) i wasnt sure if i actually wanted to officially complain, but ill see where it goes, we've got a meeting in a couple of weeks with a dr to discuss his past treatment.

overall tho, hes a lot more 'with it', a lot more alert these days. hes actually laughing at the telly which is good to see. hes never seen phoenix nights before so we're sitting through these again, hes pissing himself laughing in places, (we all are) 😀

hes still really anxious, doesnt want to leave the house, altho he has done with his bro a couple of times for a short while. and he also says if he had some of those pills in front of him hed still take them, just for the feeling he gets. thats a bit sad to hear, but at least hes being honest.

ill keep you updated as the weeks/months go by, and thanks for all your advice, it really helps.

Best wishes to you all, and keep fighting his corner...

Sounds very positive. Its an utter disgrace the way you have been treated. don't be too hard on the professionals tho - they are doing what they can i a grossly under resourced systemand many of them get burnt out.

I am glad you got a professional to over see the reduction in meds.

glad things are getting slightly better.

@sadexpunk he's lucky to have you in his corner

good news, hope things continue to improve

missed this, but:

BPD isn’t usually medicated per se but

...somewhat sure that it is, current NICE guideline is for one of a few specific anti depressants / anti psychotic combinations IIRC?

bpd is medicated. I have an epalicy drug that acts as a mood stabilizer. Does the job great with no side effects. Doubt the NHS would do this though.

BPD is not always medicated; its how the person with it is presenting .. its a personality disorder not an organic presentation.

sorry I thought bpd meant bipolar. ignore my comment.

If your case manager goes on leave, someone (should) be managing his/her caseload while away.

How many different anti-psychotics is he on? For us, three failed attempts to manage someone on medication we'd be considering Clozapine which for psych meds is considered gold standard.

Also I'm assuming the lad's on tablets? Would you consider a depot injection (could be 2 weeks, 4 weeks, there's even one that can be given every three months). The benefit is no missed doses. No temptation to take more than prescribed. Fairly consistent, slow release of medication until the next dose is given.

aphex - earlier on in this there is a post outlining the meds:
Quetiapine 500mg (we’ve dropped it down to 400mg as a trial, no ill effects) – anti-psychotic
Metazapine – 30mg – antidepressant
Respiradone – 4mg – anti psychotic
Clanazapan – 4mg -anxiety
Premephroziine – 50mg – anxiety
Haloperidol – 5mg – anxiety
Sodium valporate 800mg – mood stabiliser – (down to 600, no bad effects)
Zopiclone – 7.5mg – sleeping tablet
Presyclodine – 5mg – aching due to anti-psychotic

Thats 8 psychoactive drugs by my reckoning

sorry I thought bpd meant bipolar. ignore my comment.

I did too, what am I missing?

borderline personality disorder I think.

yes he's been diagnosed borderline personality disorder amongst other things. some of the other diagnoses seem to be related to when he was taking drugs, drug induced psychosis for instance. hes far better when he doesnt take them, fingers crossed thatll be for good.

If your case manager goes on leave, someone (should) be managing his/her caseload while away.

couple of weeks now and nobody been in touch. not even the pharmacist who said she'd ring every week.
i also emailed the CPN's boss asking for an update on his rehab referral, again, nothing back.
personally im not too bothered as i dont have much faith in the CPN anyway, and at present i feel on top of whats going on, his reduction of meds etc so im not pulling my hair out awaiting contact.

Also I’m assuming the lad’s on tablets? Would you consider a depot injection (could be 2 weeks, 4 weeks, there’s even one that can be given every three months). The benefit is no missed doses. No temptation to take more than prescribed. Fairly consistent, slow release of medication until the next dose is given.

yes hes on pills. i asked my wife about the depot as shes far more clued up than me (worked in a pharmacy previously). she said that we wanted him to have one back in the day but they wouldnt as it costs too much. also it would only have been for respiradone (dont know why), the rest would still have been pills.

TJ's copied and pasted the cocktail above, im really proud that the boys knocked off the 'addictive' ones that were causing so much trouble. like i say tho, hes admitted hes still an addict and would down a load if they were handed to him on a plate, so we're not in the clear yet.

FWIW, that shedload above has now been reduced to......

Sodium valporate 800mg – mood stabiliser
Quetiapine 400mg – anti-psychotic
Metazapine – 45mg – antidepressant (upped from 30mg)

Respiradone – 4mg – anti psychotic
Clanazapan – 4mg -anxiety
Premephroziine – 50mg – anxiety
Haloperidol – 5mg – anxiety
Zopiclone – 7.5mg – sleeping tablet
Presyclodine – 5mg – aching due to anti-psychotic

weirdly enough hes now also sleeping better without the zopiclone (sleeping tablets)

thanks

Zopiclone is apparently only effective for a short time, typically its only prescribed for up to 7 days. Although I have worked with people who have had it for 10 years plus.

If they have upped the Mirtazapine that will most likely be the reason for the better sleep.

As said previously; I feel there would probably be better results from trying to understand the BPD because thats what may be influencing the self harm and drug taking.

update, the boys taken a turn for the worse....

gradually over the last couple of months or so hes been really low, talking of suicide. hes engaging with his CPN and OT but he never smiles any more, just plops himself down on the settee with a sad face, says next to nothing, maybe necks a bottle of wine (3 or 4 times a week on average), and its tough mentally for us too living with him like this.

there are no violent episodes which is a bonus, but hes obviously in a bad place mentally. the other day he stated that he needs more help to stay safe and thinks he should be in hospital. we spoke to his OT who agreed, he had a referral and interview with crisis team and was taken in a couple of days ago.
it appears hes always on suicide sites, and almost went through with it the other day, having a knife to his ribs ready to push through to his heart, but in his words 'bottled it as it would be too brutal' for us to find.
he hasnt been taking his meds for a couple of weeks, we organise these into his dosset box as he cant be trusted with them. hes been removing them then stockpiling ready to overdose. i know this suggests that if he HAD taken them hed be better mentally, but his argument is they werent helping, so he decided to stop whilst he was still on them, so thats not the reason.

so......hes now in the local MHU and i believe theyre going to up his rispiradone, and also giving him a different anti-depressant on top of what he currently takes.

initial thoughts are here we go again, we dont want him upping his meds, but now i just think he has to take what he has to take to try and get him thinking more positively.

we also found 2 suicide notes in his room for us (parents) and his brother. heartbreaking to read.
sad days.....

He could probably get some of his meds in an Injection form so you know he hes taken them. This would be every couple of weeks. Hopefully he will safer where he is and it's great that he wanted to go. Hopefully he will get his meds sorted under close supervision

sorry should have stated, he does indeed get his risperidone in an injection every 2 weeks, thats the only one tho.

and yes its a positive that he wanted to go to hospital rather than actually go through with his plan and also yes i know its the best place for him right now.
just so sad. reading his note, he accepted hes fked up what should be the best days of his life and just wants it to end.
i dont particularly trust the hospital to sort his meds out after last time, they just seemed to up and up them until hes on a zombie cocktail. but..... i have to have more trust in them i spose.
i really wish theres something i could do to improve his life and not dread him being like this for ever.
forgot to say, he says its his paranoia thats the main problem, his thoughts racing all the time, hes going to be kidnapped if he leaves the house etc, and this is whats driving him nuts.

Sounds like schizophria to me hence the injection

Once he's stable probably after 3 months they should start reducing dosages

Don't despair, he's still talking to you. (This is a very good thing for the BPD sufferer, if they stop communicating it can get bad).

It's a constant tightrope of offering just the right amount of advice without causing them to dissociate from you. My 30 y.o. daughter is a diagnosed BPD sufferer we still offer help and support when we can. (We are her bolthole when she needs a rest from marriage/work for a couple of days).

Good luck and all the best to you all.

Mike

Sounds like schizophria to me hence the injection

the injection issue was purely to ensure he had this regularly as he was crap at sorting his meds out. we took control of the meds but they still went with the jab idea.
back in the day he was diagnosed with paranoid schizophrenia, but i dont think thats still the case. his latest letter from the psychiatrist states that his diagnosis is EUPD (emotionally unstable personality disorder)

Once he’s stable probably after 3 months they should start reducing dosages

long time to be in hospital tho, and im not sure we can cope with him at home as he is. unsure whether hes taking his meds, unsure as to whether he'll have killed himself by morning.... its a real tough gig and wears us out emotionally. they say look after yourself first, hard to know what to do for the best......

Good luck and all the best to you all.

thank you.

That injected medication is an anti psychotic hence my comment

That injected medication is an anti psychotic hence my comment

ah, gotcha. thanks

Sorry to hear things have not improved.
If he no longer has the Schizophrenia diagnosis, and it is now seen to be a personality disorder then as previously said - it is more important to understand the BPD/EUPD because meds may hide the issues by zonking him out - but talking therapies will help your son to manage them long-term and get his life back.

I expect his CPN has already told you it is important for him to address his alcohol use before they can even try to start therapies, because the alcohol will just give a whole lot of symptoms for him (and you) to deal with which wont be down to the BPD/EUPD.

That he wants to go into hospital is typical of the personality disorders, but it is important to point out it is a false environment, and when he comes out of there things will be exactly the same .. he needs to learn how to manage his emotions when stressed/anxious/etc if he wants to get his life back.

It all sounds easy and simplistic - but I know it is anything but!
There is good news that he does not have Schizophrenia, although the PDs are learnt behaviours and responses which require insight and awareness to resolve.

Good luck.

it is more important to understand the BPD/EUPD because meds may hide the issues by zonking him out – but talking therapies will help your son to manage them long-term and get his life back.

sorry, im trying to understand that but dont really, my fault im sure. the meds dont particularly zonk him out at present (but may if theyre increased). hes not like the zombie he was a good few months ago at present, just really down.
who will instigate these talking therapies, the OT? CPN? are these therapies their weekly visits, or are they more specialized?

I expect his CPN has already told you it is important for him to address his alcohol use before they can even try to start therapies, because the alcohol will just give a whole lot of symptoms for him (and you) to deal with which wont be down to the BPD/EUPD.

nope, i rate his OT and CPN, but the lad prefers to keep us out of his visits which im happy with, so they havent told us this about alcohol. i suppose we know ourselves that its harmful to him, but what can you do? i only got involved with the last one as it seemed that he was asking for help to get more support and be admitted to hospital.

and when he comes out of there things will be exactly the same .. he needs to learn how to manage his emotions when stressed/anxious/etc if he wants to get his life back.

understood. we're just going round in circles, hoping that things are improving, but then back to square one.
in fact ive just learned this morning that hes smashed his head in again, banging it against the wall, same as he did last time he was in there when he begged to come home. i understand its an awful environment and i really wish we could give him a better one to help him get better....well we can, home, but its not helping him like we hoped and thought it would. it should, but it doesnt. frustrating.
he says he bangs his head against the wall 'just to feel something' cos he cant drink where he is. he says he needs something.

so upsetting.

although the PDs are learnt behaviours and responses which require insight and awareness to resolve.

PDs = personality disorders i assume? insight and awareness - over and above what he gets from OT/CPN do you mean? he needs more specialist help than what hes getting now do you think?

The medication will zonk him out to some degree to help manage what I expect is anxiety of some presentation. People with BPD/EUPD have difficulty managing their emotions .. this can be emotions from lots of different things, and trying to identify what the triggers are is what will help; often its from early trauma - and when the person feels threatened and stressed it triggers their coping strategy they used when younger; talking therapies would help identify this to the person and find better coping strategies.
Although CPNs and OTs often complete CBT and DBT courses, the courses are little more than basic understandings of it from what I have seen - for such lengthy courses I am often surprised how little the people who complete them know; It is best led by an experienced Psychologist IMHO.

Typically we will not even assess a person who turns up drunk or on illicit substances because we wont know if we are assessing their mental health or whatever they have drank/smoked/injected. For that reason addressing the substance abuse is first priority.

Was Autism ruled out? I banging of the head could (at a stretch) be attributed to stimming ... sounds just like frustration to me, but such things will distract people with ASD. Although what you have said its to do with your son realizing that MH wards are typically the worse places to be if your anything other than zonked on meds or oblivious in a psychosis ... they are often very chaotic places.

If he is on the ward then he will have access to Psychiatrists who are the top of the tree to explore options. CPNs will care coordinate and arrange what support they feel is required ... as for MH OTs?? I still have no idea what exactly they do apart from arranging people to sign birthday cards and Xmas parties.

It is best led by an experienced Psychologist IMHO.

gotcha. and whats the difference between a psychologist and a psychiatrist? apologies for my lack of knowledge....

Typically we will not even assess a person

you say 'we', what are you if you dont mind me asking?

who turns up drunk or on illicit substances because we wont know if we are assessing their mental health or whatever they have drank/smoked/injected.

im pretty sure hes not on any illicit substances, he never goes out or sees anyone, plus he says he isnt and i believe him. his alcohol consumption was a bottle of wine every other night say, but he accepted its still too much and was trying to cut down. thats the problem, he just feels that he needs something, drugs, drink, fags etc.
but if he was due to be assessed im pretty sure hed not be under any influence of anything during the day.

Was Autism ruled out?

not at all, it was discovered that he has many traits and should have a test, but this was likely to be an 18 month waiting list which hes a couple of months or so down the line.

CPNs will care coordinate and arrange what support they feel is required … as for MH OTs?? I still have no idea what exactly they do apart from arranging people to sign birthday cards and Xmas parties.

ok, right. like i said before, he engages with both CPN and OT but hes also stated they dont do any good, just suggest things thatd help, that he knows would help, but hes got no motivation or intention of doing due to his frame of mind.

thanks for your input

I am not sure I can offer any specific advise unless asked specifics
I have autism. Late diagnosis, though all the signs were there obviously.

First his meds. I've never been one for them, even down to painkillers, though I smoke a fair bit of weed.
Due to the other conditions those are a necessity but be aware that especially the anti psychotics you cannot just stop them. Everything has a side effect or reacts to something else so overall its a subduing effect that doent lend enthusiasm to doing things like riding, excersise.
A butcher I used to work with had schizophrenia so he would have obviously had meds i wouldnt have been aware of but could work in a limited capacity in the back shop of a retail butchers. Occasional counter but mostly backshop with me. His brother the boss felt it was better for him as it gave him something to do and a routine to follow, which also for autistic is something quite important.
A goal, something to work to or work with/as Whatever his interest and most if not all autistic have them, and allow it to go extreme.

You could also see if the doctors can do a baseline on his medication. You'll find some will be given as a result of not doing anything, sitting thinking/worrying about things can lead to paranoid feelings, which unless you recognize that yourself can get really bad, and if you go telling that to the doc and how its affecting you, they can give you a diagnosis that is really temporary if you hadnt told them. Things pass, but on strong meds they continue on.
Sorry im not making much sense 🙂

I'll just say try to engage in that he is interested in and give him a routine to follow, even if you need to enforce it for a while.
Allow nothing above weed on the recreational, and no drink and that reacts with meds.

I've been through several bouts of depression, and apart from being hospitalized once have never sought help or medication and tried to myself use exercise and having a goal to work towards. The riding a bike releases the endorphins, having the goal gives you something on the horizon to look at, maybe work towards.

PS Autistic's love talking about themselves. Be patient and sit and listen. it will also lift spirit and help stock the brain with the joys of enthusiasm.

but be aware that especially the anti psychotics you cannot just stop them.

he knows that, we know that, but he wouldnt have given that a second thought if the reason was to kill himself. hed already got to this state of mind whilst still taking his meds tho.

though I smoke a fair bit of weed.

whats the thoughts on the harmfulness of this vs alcohol? goes against everything i believe in to allow him to smoke weed (paranoia especially) but if he needs something, what would you say is the least harmful in his condition?

A goal, something to work to or work with/as Whatever his interest and most if not all autistic have them, and allow it to go extreme.

id love him to find an interest and get absorbed in it, but nope, nothing. no friends, no interests, all he does at home is play xbox really.....

You could also see if the doctors can do a baseline on his medication.

sorry, whats a baseline?

Allow nothing above weed on the recreational,

as above, you think the effects of weed (paranoia) is acceptable? btw, his bro smokes it and realised he was getting too paranoid and has dackered it down now. i hope. i realise some people can go a lifetime with no effects from weed, but unfortunately my lad just seems to cop for the worst result with everything he tries.

having the goal gives you something on the horizon to look at, maybe work towards.

yep, as above, id love him to work towards a goal, hes just existing at present, no quality of life or anything to look forward to.

Be patient and sit and listen. it will also lift spirit and help stock the brain with the joys of enthusiasm.

we do this, we're patient with him and willing to go out of our way to engage him, but theres nowt there at present. its really tough the three of us sat there with him head down saying nothing, then just disappearing into his room. we try, but.....

thanks

Theres a great busy website which has a forum for autism and other conditions such as bipolar. It's a great community with lots of insightful posters from around the world.its very active and would give you more detail about everything than here. Just add a post.its called wrong planet.go to the bipolar forums and ask what other meds people are being given etc or do a search.

Psychiatrist is a medically trained doctor in mental health - Psychologist is basically a very qualified counsellor .. but don't ever say that to one!

I am a mental health social worker.

I certainly wouldn't recommend anybody smoking weed; lots of studies identify it increases gray brain matter loss.
Alcohol is also a toxin for the brain .. just more sociably accepted.
I have worked with people with Korsakoff's so seen the damage it does on the brain.

A good resource is MIND.org.uk and rethink.org

it was discovered that he has many traits and should have a test, but this was likely to be an 18 month waiting list which hes a couple of months or so down the line.

he engages with both CPN and OT but hes also stated they dont do any good, just suggest things thatd help, that he knows would help, but hes got no motivation or intention of doing due to his frame of mind.

Skim reading in work - so missed this bit.

Most if not all of us will have traits of ASD. Official testing can be a lengthy process, but I expect the CPN or OT will work alongside a Psychologist within their team (would be surprised if there wasnt a Psychologist in a CMHT) - and I am very confident the Psychologist will have questionnaires that your son, with your support, can fill in that the psychologist will be able to look at and see if there are enough red flags to unofficially say if your son has ASD.
Unfortunately there are all too many tick box mental health professionals - by that I mean they just do enough to tick the boxes of what their job description is, and do not take the extra effort to support people.
A good mental health professional will work at building your sons engagement and motivation for change; in small steps that identify small successes that encourage further steps towards the bigger goals.
Lack of motivation is a typical symptom of those with mental health problems - however some professionals use it as an excuse to make their own work easier .. remind the CPN of this; and suggest they ask the Psychologist for an ASD questionnaire; sometimes a nudge is all it takes.

and suggest they ask the Psychologist for an ASD questionnaire; sometimes a nudge is all it takes.

hes done this questionnaire (at least i think its the same one youre talking about). this showed enough traits to put him forward for a proper test, which is what hes waiting for.

A good resource is MIND.org.uk and rethink.org

been looking at MH websites including these this afternoon, and also following links to your suggestion of DBT/CBT (talking therapies?). DBT seems well thought of and helps a lot of people, i suggested this to the boy this afternoon. he said hes tried it before and never finished it so i suggested he push for it again.....

thanks

DBT is a lengthy process that needs the person to be onboard all the way. This is where a good mental health professional can demonstrate their skills by motivating a client to stick with it .. of course the client needs to be ready for the change too!
A new one I am in the process of reading up on is MBT .. a relatively new type of therapy which seems to get results.

Ultimately the person has got to recognise that they need to work on change; which is very difficult when their schemas and automatic thoughts have been so beneficial at challenging times in their lives.

About the weed aspect. I only really meant in that it is the best of a bad lot and class A drugs cause considerably more harm. I consider it mild, and if he feels the need to take something currently, weed is better than most. If he can get that then he might leave everything else alone.
Sorry again, nothing is a watertight surety.

By baseline. Its when the doctor looks at all the drugs he has and is being given to make sure nothing is now conflicting and nothing they've put him on has had a negative effect.
I guess most wont know the side effects of something like Librium, but having taking it in big doses the effect is the person taking it for any length of time, is hallucinations, very vivid and a strong depressive weight on your limbs. Effort is an effort.(Went through the Glasgow homeless system, you meet many and hear many stories.)
Not sure if this one is still given, but most are like that effect. So possibly those he's getting are suppressing the urge to do anything.
Anti depressants also can affect but worse can change your thinking. I've been on some but stopped as i felt that it was making physical changes to my thinking structure. I could at least recognize that was happening. Again might find the drugs side effects but he's being forced on to him and any changed maybe recognized as part of something else like the schizophrenia.
A baseline to my understanding is a fresh look at it.

Just a common or garden depressive here, with an old-school psychiatrist who can’t see the point of an ASD diagnosis at age 50.

suggestion of DBT/CBT (talking therapies?). DBT seems well thought of and helps a lot of people, i suggested this to the boy this afternoon. he said hes tried it before and never finished it so i suggested he push for it again

Just because it wasn’t the right time last time doesn’t mean that the right time won’t come. I had a go at DBT as an outpatient at an MHU but it didn’t do it for me at the time - too much, too soon. Several people said how good they found it. I feel I would like to go back and have another go now I’m no longer in crisis. It sounds as if your son might be getting to the point where it’s worth another shot. It’s a tricky call to make as to _when_ to tackle it, especially in a treatment-rationed regime.

It is exhausting being mentally ill, and exhausting supporting someone who is has poor mental health. You are all doing the best you can, and no one is to blame for what is going on. Give yourself a big hug and tell yourself how well you are doing. Your son is lucky to have you and I wish you all the best as you fumble on round and round until you come out the other side.

@sadexpunk I have nothing to add other than to say I hope you get your lad back and you're doing a sterling job.

bit of an update.....

hes getting worse on the MHU ward, started bashing his head against the wall so theyre now talking about alternative accommodation to get him away from that environment. coming back home being one of the options theyd like.
we've explained that hes worse than we thought he was and that we cant really cope with him being like this. the house is a lot less stressful just me and the wife. feels a bit selfish but we've had 10 years of this now and the advice is always to look after yourself first before you can help others.
however, we've said that we could have him back if its just for a short spell before alternative accommodation is found. im a bit scared tho that once hes back home, their risk assessment changes, hes safe again, ahhh we can take our foot off the gas now and it all goes slowly slowly and nothing changes. had that before and have had to take drastic action that upset us.

the social worker is looking at supported living which sounds my favourite option. hed have to go into a halfway house tho whilst it was sorted, could be a couple of months or so, thats why we said we'd prefer him at home than there. i believe this is one of the places where theres plenty of undesirables and drugs, hed be scared and possibly take drugs again in that environment.
hospital said that the problem with that is that supported living may refuse to take him due to not being qualified enough to look after self-harmers. i asked then why theyd be happy for him to come home and live with 2 people that have no qualifications at all in this, yet refuse him somewhere that they will have had at least some training. "hmmmm yessss i see your point."

as before, theyve upped his meds. for those that may know anything about them, theyve moved him onto venlafaxine instead of mirtazapine, doubled his dose of sodium valproate, and started him on clonazepam.
not particularly happy that we seem to be going backwards after we'd got him off a load, but ive resigned myself now to just accepting this, as my plan for minimal meds and a settled home life with family and the dog obviously didnt work out either, just dont want him 'zombiefied' again.

we have a 'conference telephone call' on tuesday where the hospital staff, CPN, OT and myself will all discuss where we go from here.

thanks for listening.