Long story short I have a LONG history if being dismissed by medical professionals... from them refusing to do an xray in my arm because I could still ride my motorbike (they did the xray eventually an I had 2 breaks in the bone) to CMHT constantly discharging me only for me to be re-referred by my GP or IAPT a few months later
Anyway, last night I came up with a theory and I just wanted to run it by a few people. Yesterday the CMHT told me they are moving towards discharge again as they think I'm OK to deal on my own based on our meetings. After the meeting ended I got very upset and decided I was obviously a malingerer and faking stuff subconsciously and so deserved to die before I took anymore resesources - fortunately my partner and a friend talked me down
Anyway over night I have come up with a new theory... what if its the autism? What if I am subconsciously masking in all appointments and so because I am not acting the way they expect (because I am subconsciously desperately trying to act "normal") they don't believe my words? What if I am trying so hard to please them that I am subconsciously altering my homework to look like I am improving more than I am? What if I have always been doing this and thars why I can't get any meaningful help despite believing that I am constantly asking for it? Maybe thus is why my friends all believe I am ill and yet the professionals can't see it?
Does that make sense?
If it dies make sense What do I do? I fear if I say this theory to the CMHT they will assume I am simply making excuses or trying to faje stuff ir something, I don't even know
But does the theory make sense? Anyone know if it could be a thing that's happening?
Is there any autism/adhd support available in your area? I’ve just been referred (probably, if anyone’s remembered). Could potentially be way more helpful than CMHT anyway.
Also wanted to tell you that the constantly dismissed thing isn’t right and is so, so unfair. I hope they can be convinced to keep you on.
'It's an impossible choice ... I'll just have to hope that when I flip the coin it somehow explodes and kills me.'
"You're not scared of climbing mountains. You're scared that you can't make them move."
Urgh, I’m sorry they’re being so unhelpful. Do you find any of the input you get when you ARE under CMHT helpful? If so, could you maybe have a think about how it’s beneficial and maybe write a letter explaining that? Sometimes it can be hard to explain verbally. Regarding the potential neuro divergency, it’s possible! What do your partner and family think? I don’t think you have anything to lose by bringing it up with CMHT. Individuals who identify as female are woefully under diagnosed when it comes to neuro divergence.
Also, I cannot recall whether links are allowed here. The brief screening they would use would probably be the ‘AQ-10’ which you can find for free online, if you are interested.
Sorry to hear about the CMHT trying to discharge you again, that sounds very frustrating! If it helps, I'm also autistic and have similar problems with coming across as more fine than I am, because I rely a lot on scripts and usually default to an aloof-but-upbeat affect with professionals.
I've kind of resorted to trying to "act" the way I actually feel if I need to get support, even though it doesn't come naturally - things like not trying so hard at doing eye contact, changing my tone of voice, slowing down my speech, being more honest about my feelings rather than doing the "I'm fine thank you!" politeness script. I don't know if that's something you could try at all?
I've also spoken to professionals before about this, and some were really good about listening to my words instead of my body language, but others were not as good. How have your CMHT people been with autism stuff so far? I don't know if masking is well-known about outside of the autistic community, but I'd hope your team would understand if you explained that autism means your distress doesn't show outwardly as much as if you weren't autistic?
I'm already diagnosed with autism and ADHD, been diagnosed as such for a while. I'll admit the CMHT seem to have a shockoingly low level of knowledge on the topic... I genuinely spent like 20 mins earlier in the year explaining to them that no I can't use graded exposure to help with my light hypersensitivity :/
There is a specialist autism/ADHD place in town but it's really expensive... I am apparently on a waiting list to be assessed for an auditory processing disorder with them at some point through the NHS but it's a 3 year wait, apparently even longer to see the specialist psychs there. Obviously quicker if you pay but that's not really an option for me
If I'm honest, no, the CMHT are not all that helpful... I think they were 10 or so years ago but now everytime I get referred to them they just seem less and less useful... this time round all I have gotten since March is some self-guided DBT resources and a graded exposure worksheet that I genuinely could have found online myself... I Was under IAPT fir a while before that abd they seemed to listen but after I disclosed something they panicked and got the early intervention team involved who in turn referred me to CMHT
However, being under them does help with gaining things like PIP and LCW and as I can never seem to hold down work for long that's very useful. As it is its almost a year since I've worked now... and when I do work I'm lucky to last 3 months without a breakdown of some kind.
Also being under CMHT makes me feel like maybe I can get better or something... hard to explain but basically when they discharge me I tend to give up a bit and self destruct slightly, which obviously isn't great... especially as I'm not sure I'd class myself as stable as it is
They have also been promising me a medication review for 9 months now and it's not happened yet... despite my GP chasing them up repeatedly
Also the CMHT seem to ignore EVRRYTHING I say that isn't anxiety based... which is frustrating... they seem to care very little about my hearing voices or that I am purging again, and I don't think they have even mentioned self harm since maybe April
I don't know... either I am a faker but don't realise it, they genuinely don't care, or somehow things are getting lost within my social communication
The CMHT have recommended that they discharge me in February and that I try to get CBT through a charity... but I have looked into saud charity before and they wouldn't take me on because they saw me as a suicide risk, so really not sure what they way forward is
can very much relate to what you are saying and to your experiences. masking plus communication issues can make things very difficult for medical humans and mental health humans to understand, especially if they do not know about autism/adhd. it's incredibly frustrating.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
can very much relate to what you are saying and to your experiences. masking plus communication issues can make things very difficult for medical humans and mental health humans to understand, especially if they do not know about autism/adhd. it's incredibly frustrating.
Do you have any tips/advice of ways to get round this? I am really scared that if I bring up the theory they will just want I'm making excuses or faking or just wanting to scam benefits or something...
Next CMHT appointment isn't until the 10th of Jan which I ages away and I really just don't want to have to spend the next 3 weeks panicking about this as firstly its unfun and secondly is I on about thus for 3 weeks then by the appointment I'll probably have talked myself out of saying anything
I'm wondering if your location is accurate still - if you're in York, it may be that it's a much wider problem than anything you have done/not done. I wanted to make you aware of that so you don't blame yourself or silence yourself or minimise your own experiences. I don't actually have any advice about what to do, nor do I have in-depth knowledge of things that go on in the Trust, I've just heard of other people having similar struggles. And yeah, I'm just sorry that it's left you and others fearful - it's okay to be forthright about your needs and struggles, perhaps it would be helpful to write them down in a letter to take to the next appointment.
Ye i am in York... have also heard that loads of people are having issues around here. People on twitter also think that our local CMHT is on a bit of a discharge binge right now as apparently loads of people have been told similar to me in the last few weeks.
A few people have suggested writing a letter... buy with the appointments all being over video call I unfortunately can't just hand anything over. I've tried emailing stuff before as I find it massively easier to write stuff than say stuff, when I have to verbalise stuff I find myself just saying what I think they want to hear not what's really going on, or I find myself just incapable of finding words so I panic and say I'm fine just now fill the silence... but the stuff I've emailed seemed to never get mentioned or referenced in appointments.
I've also explained this communication issue in the past, but it feels like noone took notice...
Having had 3 care coordinators since March also hasn't helped as now I feel reluctant to tell them some stuff as they might just leave anyway and the effort would have been pointless. My current care coordinator has only been in the job since July, I'm one if his furst patients, and in that time I thing I've seen him 6 times... I don't feel able to tell him some stuff as I've basically only known him for 6 hours
I'n considering sending copies of the letters I got friends to write for my PIP application to my care coordinator... thinking might give him a better view of what's going on without it just being my words
does that sound like an ok idea or would it be a bit odd?
Honestly I don't have a lot of tips because I had to give up on services that took my medicaid (our government funded insurance here in the US) because I couldn't find anyone who was understanding or even had basic knowledge of autism or adhd and willing to work with my communication issues (I am largely non-verbal and have to type to communicate).
I now have to pay for providers who specialise in neurodivergency and LGBTQ+ folks. What I can say is that the difference in care and understanding, as well as my ability to participate is VASTLY different. It's on another level I can't even compare. All of the things that were barriers in treatment before are gone because my providers now understand that I'm not trying to be difficult and are able to work with me and communicate with me. It's a huge struggle to afford and it's really shitty that finances are often a barrier for good care, in all of our countries.
One term I've found recently was "neurodivergent affirming" and that's something I've found helpful to ask about or look for. I can find a definition for you if that's not a term you are familiar with.
I'm also currently looking into autism/adhd coaching. I've found a few providers (virtually) who are willing to work on reduced rates. It's not therapy, it's help with more practical stuff but I think could be useful for me. The person I'm potentially going with is actually located in New Zealand! So being able to broaden my search worldwide in that respect helped me.
I wish I had better advice or words. All I can really do is offer solidarity in that I've been there and it's definitely NOT you. It's a very common issue.
I've recently joined twitter and noticed a lot of good conversations going on there, about disability, autism, adhd, etc.. I don't really participate, but it's pretty cool to find other humans I can relate to and who encounter the same struggles. There's definitely UK folks on there because I've seen a lot of NHS related talk.
I know those really aren't professional support but sometimes just having a community you can relate to can be something good?
Also re sending letters to your CC, it might be a bit odd but I think it's a good idea given they're not working with your communication challenges.
I don't know disability laws there so I'm assuming that asking for accommodations to be able to write/email/etc instead of speak is not really an option? I've struggled to find providers willing to do it myself even though it's technically not illegal to do. Most providers seem to think being verbal is a requirement which is so stupid.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
i have heard of autism/ADHD coaching, I don't know much about it but seen some on twitter mentioning it. I agree on the twitter thing btw, I think I may have learnt more, and gotten more support, via twitter int he last year than I have gotten from any professionals
I think technically I could ask for accomodations, but if I am honest I seriously doubt I would get any
I'm happy to try to talk a little but more about my so far limited experience with coaching if you'd like lol. I'd actually never even heard of it until recently so it's very new to me.
That's fair re accommodations. Ugh. I'm sorry.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Hi thought I'd jump in here, and say this is exactly the same scenario I faced for many years, not being heard, or being ignored by the very services that are supposed to help me, it took me a long time to fix the issue, and I don't believe it has anything to do with masking, it has more to do with text books, and not fitting their expected criteria, or a refusal to provide treatment based on staff shortages, or passing the buck labelling me an addict, instead of referring me to the appropriate teams for treatment.
it was a drug and alcohol counsellor who finally helped me to start getting the help I needed, by requesting the help of the Dual Diagnosis team, this got the ball rolling to begin getting the CMHT to listen, once listening, I finally started to get better help, although they still tried to mess with things when they were short staffed, until I actually printed out, a county court summons form, filled it out and took it with me to the appointment, and asked them if they would like me to actually submit it to the court.
They've never ignored or messed me around since, trying the discharge tactics etc, it may sound extreme, but is that something you would consider? you can state the reason for issue as, Mental Health Discrimination, as per the Mental Health Discrimination Act 2013 - failing to provide adequate treatment, and continuously trying to discharge someone, who clearly still needs treatment and support, would be neglectful, and discriminatory.
If you feel you still need them, and are not ready to be discharged, they can not discharge you, and simply, the fact you're questioning the possible discharge, tells me, you are not ready, they need to respect that, if they won't hear it, then maybe they will need to see it instead.
Do not let UK mental health services, that are there to treat you, and are supposed to be there to help and support you, and manage your needs, get away with neglecting your needs. If you let them continue doing this, they'll continue to treat you like an inconvenience, they can treat, only when they choose, or when convenient for them.
Our mental health services here in UK are terrible, I get far better treatment when I am abroad, than in UK, but since I threatened to submit the summons for Mental Health Discrimination, they have been much better than they were before, now instead of threatening to discharge me, my CMHT switched me to a better suited Psychiatrist, who I can connect with better, and the psychiatrist phones me, to check I'm ok, she's aware I struggle verbally, so when I struggle to talk, she will at first, tell me to take my time, and is reassuring, it's a world of difference, but still will never match the listening skills, and treatment skills of my psychiatrists abroad.
If you decide you want to give the summons idea a go, just google, county court summons form "N1"
If your on benefits it's free to take them to county court, but the chances are, like me, just faced with the threat, they will change their attitude towards you, but make sure they know that your summons would be accompanied by an "EX160" (Help with costs - exemption of court fees), this means any costs would be taken from the other side (them).
I really hope they stop treating you this way, especially with the impact the Covid situation has on our Mental Health, Good Luck
Had a brief look into autism/ADHD coaches, they do look helpful but wow pricey. Might be something I concider in the future
The idea of threatening legal action is kind of terrifying... a friend of mine wants me to complain to PALS and even that feels scary, I don't want to cause problems or nake waves or get anyone into trouble... perhaps they are right and I am fine, I don't know
Though I've also not actually seen a psych of any kind for years, only seen my care coordinator and hardly even seen him really. They have had meetings about me of course, with psychs, but I'm not there for that so don't know what they say
I get that technically they can't discharge me if I don't agree/accept but i also know I will just go along with anything they suggest as I'm too scared of being a problem... which i fully get it kind of a problem in of itself
Like the other month my care coordinator told me I am not allowed to be angry at my mum for her sexist and homophobic/transphobic attitudes because she is "of a different generation" she's only 21 years older than me and these attitudes if her have hugely impacted on my life... but rather than argue I just agreed with him and have felt guilty for being annoyed at my mum ever since... my mum who I don't even speak to because she comments on my weight and clothing and hair constantly to the point that I am fairly convinced that she triggered my bulimia...
And he keeps recommending homeopathic stuff and I just nod and agree despite being fairly certain it would have zero effect on me... if diazapan doesnt help with my panic attacks I doubt homeopathy can
But I can't argue . I just nod, agree, then feel bad for even thinking about disagreeing
I am FINALLY seeing a psychiatrist on the 10th of Jan to get the medication review that I asked for in March... but it sounds like it won't come to anything as the team seems weirdly anti-medication... which is fine, not everyone needs meds, not everyone wants meds, and meds don't work fir everyone... but if I can't start to leave the house without disembodied voices screaming at me or having a panic attack then I don't know what will happen. I can't keep living like this, it's no life
