Published on 12, July, 2020
I was recently diagnosed with autism. I got the assessment done on the suggestion of the community mental health team. However, I now feel that, even though I have the diagnosis, they are not interested in how they could make small adjustments to make communicating with them less stressful. I find social encounters distressing anyway, but when attending appointments with cmht, the very nature of the meeting, which requires me expressing how I feel etc, makes it overwhelming. That’s aside from the usual stressors of the environment, and trying to read their intentions. As a result, the relationship is strained and in a moment of frustration I said I wanted to be discharged. They did it instantly. Yes I said it, but I explained that it was in a moment of upset, and that they didn’t even open a discussion about how to better accommodate my needs. I am due to have another appointment with them.
How do I go about making me needs heard and met?
And on a separate point, I find that when you have an autism diagnosis, instead of viewing any comorbidities as separate from autism, everything is attributed to it, as an excuse to deny you treatment, rather than adapting treatment to suit an autistic person. I am newly diagnosed, but I still know my own mind and I know what is autism driven, and what is not. They try to say my OCD compulsions are ‘comforting’ and are part of my autism, when they are not. They are highly distressing and driven by intrusive thoughts. It is the same with my eating disorder. They keep trying to say it is restrictive because of sensory stuff to do with autism, but again, I know what it is driven by. Yes, some of these things may have been exacerbated by autism, or made more likely because of it, but this blanket use of autism to try and justify not treating it, means I am left struggling.
Again, any advice on making sure my needs are met int his area? And is there any rule or guidance that makes it obligatory for services to meet these needs?
Sorry to hear about what happens in mental health team. Unfortunately CMHT are not geared up for anything other than mental health,and prescribing anti psychotics(that's psychiatrists job!). All health is pigeonholed and if u have more than one pigeon hole they know nothing of it(yet to be proved wrong by anyone over decades!). Personally if you are dealt with for Autism by a team that is great,and discharging urself from MH could be the best thing you've ever done. As CMHT don't deal with comorbidities(as i found out for over 30 yrs with brain injury symptoms!). I think your GP could deal with other things(tho their job is guided by CCG's and money,so mostly again just drugs-mostly anti depressants!),but primary care(GP)is only different than CMHT in that they give less hard drugs(disregarding comorbities).
CMHT is only rarely good in a crisis,which unfortunately means people have done something drastic.
Mostly CMHT will put ur health down to u causing ur own problems,as if it's ur fault-saves them bothering!
The problem with NHS is that they calling anything mental health and so too many are dealt with by them,and there is even less money to treat,just give depo drugs instead.
Even Epilepsy is constantly being dumbed down to MH or anxiety-is ridiculous.
Yes I’ve found they as soon as you have more than one diagnosis, or ‘symptoms’ fit into different categories, they write you off because the ‘referral pathway’ for you doesn’t exist. The amount of people wrongly cut out of the system because of illogical criteria etc is awful. I know people say mental health doesn’t have parity of esteem with physical health, but in some ways mental health is approached TOO much like physical health in terms of ‘ticking boxes’ and the ‘one size fits all’ approach.
Trying to split you up??? What??? Errrr Human Rights Act!
My God, you've been through the mill.
It's all about education, you know. They need to stop judging and start learning.
...and I worry about the relationship between drug companies and prescribers too.
Don't get me wrong, some people find their meds helpful and I do hear odd stories of services getting it right - though sadly, not enough of them. I would never want to put anyone off seeking care. But has to be the right care and they can only make it the right care by listening. And their meds... need re-assessing when ASD is in the picture.
You definately understand some things more than them. I only have been on anti depressants once(had seizures/didnt sleep),and an anti psychotic from a GP yrs ago(passed out). It is a bit of a game-show feeling u think are genuine,and they can use against u-like 'ur agressive;. Plus that hate people who don't 'comply' by taking meds. As if 'well if dont take them u cant be ill' or 'ur a liar'. Once was so fed up i asked GP to prescribe mood stabilser,and was a meeting in CMHT with about a dozen people(have notes!)-bet they were thinkking 'yeah hes complying,well get him on drugs we paid to by drug companies'. GP's have varieties of contracts,one is a contract to get people on medication. Seen story in newspaper. I google searched and couldn' believe my 'paranioa' as they said,was not paranoia,they are paid by people to drug up.
As for what happened to a loved one,my GF tried to kill herself before i met her and still housed under section. She headbangs and they dont understand at all. She has burns and scars as reminders-who has helped her the most in 5 yrs,me(her words). And MH have done all they can to split us up-cos i get her to fight for care. Trying to get her care has made me ill. Finally social services doing more,as should have before.
Yeah, I have been very angry about the service but never once said to any individual "you are personally to blame" or projected my angry feeling AT them". And trust me I am ordinarily VERY slow to anger. It really dose have to be something of this magnitude to get me riled.
And yet I am asked in therapy to tell them my feelings about it, when those feeling are angry ones (not projected at them but evidently very angry), they say : "but can't you see your angry?" (as though I can't, and I've got GOOD cause). They then accuse me of either "taking my anger out on them" (What?) or conversely of "not investigating my emotions". Go figure!
First they want to know what I feel about the previous failure of care of my loved one. Then I'm a bad person for telling them! And I'm also a bad person if I don't. If they didn't want to know, why ask? Oh yeah! I'm not ALLOWED to be angry about THOSE things. There must be some other secret , more appropriate emotion I'm supposed to feel - God knows what; an impulse to fawn in appreciation, perhaps?
I'm letting it all out now, aren't I? Sorry. I'd let it go, but for the fact I'm now actively frightened of ending up in their hands again. At the end of the day, all I want is change. Show me some "care". Drop their preconceptions and listen to my experience properly, then tell me what they can do to help and what they can't, either because they don't know how or don't have the resources to. A bit of honesty on that score would at least show I'd been listened to and respected, even if they have nothing to offer. I can accept that position. They can't give what they don't have. But to BLAME the patient, after they've messed up is rubbing salt in the wound and pushing people closer to the edge. It's almost gaslighting, in fact.
No, I won't let them drug me either (which they don't like). a) You can't give a medical phobe drugs with a list of side effects as long as your arm and not expect them to be MORE anxious. b) I don't trust them to get it right, and if they get that wrong, they can make matters worse. Thank God, I never gave into that, because from what I'm reading there are some drugs to be oh so careful of if autism is in the mix. There are some they are now discovering which can cause autistic catatonia.
I want to work constructively for change! For me! And for everyone else. But what in God's name is it we have to do to get it?
One size fits all-u got it. With brain injuries i have they just treat me as if i'm stupid. If tell them they are useless am told agressive. My gf has been dealt with CMHT since teens(now mid 40's),and they are just a depo sewrvice. Totally inappropriate. She has a rare genetic epilepsy syndrome that cos MH(and NHS) do not know about it,it doesn't affect her. Apparently they say she has a personality disorder(dead end diagnosis i had!). They dont undwerstand epilepsy other than drop falls. My gf would probably be treated with same drugs(Lithium,Olanzapine,Clozapine),but be more understood somewhere else. Really CMHT's are 90+% an addiction service,as those people will be compliant to take any drug they say. MH like to control all diagnosis to nothing-tried to get my gf to throw out genetic Epilepsy diagnosis letter. Also they confuse frustration with agression. And ignore care clusters they actually give. They have caused deaths of alot of people with inexperienced psychiatrists,no multidisciplinary service at all.
What dismays me is that even with physical health, they join the dots better. If you needed an op on your back but also had diabetes, the impact of the diabetes would be integrated into the plan for the op and your recovery.
If you have MH problems and autism, the one may be impacting on the other, even though there will be other factors involved. The two disciplines can't keep batting you between them, nor can either one deal with the separate issues without consideration of the other. I can't believe that there doesn't really seem to be some specialist dept. that deals with general MH FOR people with autism.
I'm quite frightened actually because I have serious medical phobias which MH Services have been no help with. I have always been able to tell which adverse childhood events have a role in its development (that much could happen to anyone and looks like general MH), but now that autism in on the agenda and my mother is telling me about some events with doctors at the age of two, I'm beginning to understand that the sensory aspect also probably has a role, and autism is probably behind the problems with care so far; I can't process or think or feel about anything the way they expect people to. I honestly believe the only way the services can help us is to start seeing these things as both psychological and neurological and start developing therapies which accommodate both.
To my mind, if they just don't have the resources or the treatments available, the very least they could do for us is tell us that honestly and at least leave us our dignity. After all if you had a back problem they didn't have a treatment to correct, that's exactly what they'd do. Instead, they bat between pillar and post because they don't want to deal with it, or worse, when we can't fit the boxes, blame us. That's not honest and it makes the problem so much worse.