Published on 12, July, 2020
I have suffered from significant depression and anxiety for the last few years, which came about due to the treatment I endured by a former employer. During this period I have struggled to get any help from mental health services at all - I am just passed from one service to the next and none of the professionals appear to understand me due to my autism. All I keep hearing is 'well that's not my area' or 'I don't specialise in that' when I ask to see someone who can treat my mental health problems and understand my autism. When I asked if adjusted CBT was available in my area (such that is appropriate for someone with autism), the answer was a straight no. Further, I get 'well we can't guarantee the same person would see you all the time, could you cope with that?' and 'well you're going to have to have a degree of flexibility and willingness to change and obviously that is going to be hard for you given your autism.' In other words, mental health services are very negative about my autism and they are unwilling to understand how it affects me because they only deal with the mental health side of things.
A few weeks ago I had a very difficult episode with my ongoing mental health and I ended up in hospital as a result. This led to me being referred to CMHT once again. Then yesterday, following a visit to my GP where I unexpectedly found out my referral to CMHT had been rejected (which nobody cared to tell me about), so I spent 6 hours chasing around 4 different mental health services because each was saying the other should be seeing me and communicating with me about what is happening, only to be ultimately told following another assessment that CMHT is the most appropriate team for me and I will be re-referred to them. Added on was the fact that if I wanted to see someone who would understand my mental health and my autism, then I would have to go privately because CMHT don't have these services.
This all just seems like utter madness to me, and it has been going on like this for years - nobody in mental health wants to deal with me because they don't understand the autism, but then services for autism say that mental health is not something they deal with. Why, just why, isn't there somebody, somewhere, that can understand both?! As my autism is a fundamental part of me, then I believe it is imperative that anybody assessing or treating my mental health understands it and how it affects me. If they can't do that, then I don't believe they can help me as they can't even begin to understand my thinking. What do you guys think? Am I being too demanding here?
I have now found out that CMHT somehow didn’t receive the second urgent referral sent by my GP, despite the surgery confirming they sent it two weeks ago and CMHT being fully aware that they were to expect another referral on the day it was sent! So, yet again it fell to me to chase them before anything at all was going to happen and now it will be another wait of 10 working days to see what they do with the referral this time (now that it has been sent via email and CMHT have confirmed receipt).
It’s over a month since I was in hospital for a suicide attempt and frankly I don’t feel any more settled mentally than I did then, yet I’ve had absolutely no help from mental health services in this period and instead an awful lot of upset/frustration has been caused to me by them. Why on Earth do they make it so damn hard? I often wonder if they do it deliberately hoping that you will kill yourself and then they would have one less patient do deal with...
NAS36609 said:I have now found out that CMHT somehow didn’t receive the second urgent referral sent by my GP
Well done for persevering. Is it a home treatment team your GP has requested? Or is the first appointment likely to be a re-assessment?
NAS36609 said:an awful lot of upset/frustration has been caused to me by them. Why on Earth do they make it so damn hard?
Money (lack of), reorganisations, cuts, overworked admin staff going off with stress, reorganisations, under-trained admin staff, inaccessible psychiatrists who've made their own compromises with the system... I've had four copies of the exact same appointment letter from my CMHT, and then been sitting in a waiting room for an hour, before being told I'd been sent a letter cancelling the appointment, which never arrived.
NAS36609 said: I often wonder if they do it deliberately hoping that you will kill yourself and then they would have one less patient do deal with...
Well, it's a form of triage I've also wondered if some see certain services (long-term therapy) as a dumping ground. A lot don't know how to react to an autism diagnosis.
It's a long time since I've been considered a suicide risk - some areas seem to have crisis cards, often mentioning A&E, crisis lines, crisis houses, and voluntary crisis services.
I think the mods here haven't posted the usual helplines:
NHS 111 service: http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx
The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on jo@samaritans.org.
MIND have information pages on coping with self harm or suicidal feelings based on the experiences of people who’ve been through it that you may find helpful. https://www.mind.org.uk/
If you are very close to doing something to hurt yourself or others - call 999 now or go to your nearest A&E department. There should be someone there to support you and make sure you get ongoing support.
If you need help with an autism related issue, our helpline can be emailed via webform https://www.autism.org.uk/services/helplines/main/questions.aspx or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.
Besides all that there is this place: http://maytree.org.uk/ They provide intensive residential support during a suicidal crisis, with an interesting proviso: you an only ever go there once.
Have you talked to your GP about if there is any additional support you can get while waiting? Mine wasn't an urgent case, but the GP found a list of voluntary agencies that provided subsidised or sliding-scale counselling, one of which was quite good. Maybe they have a directory that covers your kind of situation.
And finally, I'd like to mention mutual-self-help/peer-support groups. Mind has a list that may be incomplete, and there could be one near you: https://www.mind.org.uk/information-support/guides-to-support-and-services/peer-support-directory/about-peer-support/ I know face-to-face depression groups can be good at listening and sharing information and I think many people who attend are probably undiagnosed autistic.
Fingers crossed for you.
We are all there for you, I am on anti-depressants just to keep me stable until I find my equilibrium, not that I want to be on them but due to unfortunate circumstances. I find that treating yourself helps and being positive about who you are as an autistic person can help. Be gentle with yourself and enjoy the sun when it shines, sending love and goodness your way.
Thank you so much for taking the time to write that comment, it’s certainly made me aware of some services I didn’t know of before and that really helps me to hope for better help than I have currently.
I think I’ll be assessed by CMHT again if they will see me. The intensive home treatment team said I should have longer-term help from CMHT, but of course whether I get that depends on if CMHT agrees. They’re certainly making it hard work to even see them once, never mind long-term! You are right, it’s probably down to the lack of money, but it’s far from ideal when you’re really desperate for some help.
I’ve been told that whilst I am waiting for my referral to be dealt with by CMHT I am just to phone the crisis team if I am suicidal. The problem with that is hat I really struggle using the phone, and it’s worse when I’m upset. The mental health staff are aware of this, but it’s still all they can offer me for now.
My mood is not wonderful at present, but I’m just trying to keep it stable day-to-day. I find that being on here and talking to people I can relate to really helps me, so that is what I’m tending to do when I don’t feel great, though sometimes I just can’t bring myself to it. I have a very busy few weeks coming up and hopefully it will keep my mood from dipping, rather than pushing me over the edge, then after that I should have heard from CMHT with any luck.
The hole may have deepened, but I’m still trying to climb out of it at least!