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?
As someone who is still suffering serious mental health issues because of the way I was treated at work, I can sympathise.
I also find it strange that I keep going to my GP and they just keep giving me sick notes so that I can get benefits (I ultimately lost my job due to discrimination and bullying), but they have never offered me any actual treatment. When I asked about this the last time, saying that my stress-related headaches were getting really bad and painkillers no longer made any difference, I was told that I could go on antidepressants (though I have not been prescribed anything yet) and I was referred to a stress management course involving CBT. I'll give the course a try, but I do not understand why I couldn't continue with the same psychiatrist who diagnosed me, or something like that. I don't want to take drugs because I really don't see how that's going to help me, when my problem arises from how others treat me, and not from some chemical imbalance or whatever.
Of course mental health professionals should understand ASD. It's in the flipping DSM-V as a "mental disorder", not that I particularly agree with that, but it's definitely not a physical condition. The trouble is that people in the healthcare community just don't want to put in the effort of treating someone with more than one thing "wrong" with them because that would require too much effort. After all, GP appointments are limited to 10 minutes because they only want to treat people one symptom at a time. Therefore, anyone with ASD along with anything else is just too much trouble.
DragonCat16 said:I don't want to take drugs because I really don't see how that's going to help me, when my problem arises from how others treat me, and not from some chemical imbalance or whatever.
I feel much the same about them. I did forget to mention that I’m offered antidepressants every time I see my GP despite me making clear that I don’t want them and explaining why. At the end of the day, like you say, a pill can’t magically fix everything that has been done to me by others that made me feel that way in the first place!
I’m sorry you are having your own difficulties in this area, as I say I think it’s mad that nobody wants to deal with mental health problems plus ASD. I’ve even sent an email to the NAS asking what they are doing about this issue, but all I’ve received so far is information regarding how they are making sure GPs are more aware of ASD, which whilst good doesn’t address the mental health side of things. I’ll keep trying...
I had the same problem with my local CMHT. Pushed from pillar to post, treated like a malingerer, told to stop drinking and I would get better, told that I couldn't have ASC because I was too high-functioning, etc. Their level of knowledge on the condition seemed to be zero - even among trained psychiatrists. It's a disgrace. They made me worse, not better, with their constant rejections. It was only when my therapist insisted to my GP that I bypassed them and got a referral to specialist autism services that I finally got my diagnosis.
I am sorry you have had such a poor experience too. It’s terrible that when you need this help you get nothing, or as you say those that are supposed to help actually make you feel worse. Thank goodness for your therapist and I am glad you managed to get your diagnosis in the end.
I think it works both ways. If you get a mental illness diagnosis first then everything is seen as being related to that diagnosis and things like ASD/dyspraxia/NVLD get ignored or overlooked. Either way it means inadequate/poor help/support/treatment .
I quite agree firemonkey, and I think that’s another reason why we need professionals who can understand, diagnose and treat all of the relevant problems.
Sorry to hear it's been so difficult for you. This is a particular cause of mine too - all those years trying to find effective treatment for depression, and no one suggested autism, and when I did get a diagnosis, there were no appropriate services that could help with the difficulties underlying the depression. And getting stuck in group psychodynamic psychotherapy that was predicated on the idea that my problems were from my upbringing, and like most psychoanalytic/psychodynamic therapy is of limited benefit to anyone, and harmful to the clients.
I don't think you're being too demanding at all. Given maybe one in ten people in the mental health system is autistic (my rough estimate given 66-80% secondary mental health problems), you'd hope the professionals had something to offer than inappropriate stereotypes, but you'd be lucky to find one who has. It's a dreadful situation based on decades of psychiatric myths. Most of them don't seem to believe alexithymia can exist. There's a petition at https://petition.parliament.uk/petitions/207658 which hasn't had enough exposure. I'm lucky to be able to get private mentoring and not need much more right at the moment.
My suggestions would be to make sure you have your GP seeing the maze of non-services in the same way you do. It sounds like your case is lost in overstretched secondary services - I've been on the waiting list for services that wouldn't accept me before, mis-signposted and so on. However, your GP might find something in primary services like IAPT - some areas have clinical psychologists who have at least an interest in autism, and if you find that, all you need is a discharge from the CMHT.... The big question is how you can imagine support (or 'scaffolding' that could later be removed) helping you. I've met people who've had adapted CBT and it seemed to help - systemic therapy or problem-solving therapy might also be useful.
Yes, I came across that petition a while ago, but as you say it hasn’t had enough exposure. I’m still waiting for a response from the NAS regarding what they are doing about this issue. All I’ve had from them so far is information about how they are making sure that GPs are more aware of autism, and whilst this is good, it doesn’t help with the mental health side of things.
I’m sorry you’ve had difficulty in this area also, though I’m glad to hear that you have found some private mentoring that has helped you. I just can’t afford private treatment currently given what my Employment Tribunal proceedings have cost me.
My GP does her best and she is frustrated by the lack of services herself, but there’s nothing she can do about it. The stupid thing is that in the county next to me there is apparently a mental health service that better understands autism, but I can’t be referred to it because the Local Authority area I live in do not fund this service! So I’m a bit stuck with it all. Many thanks for your suggestions though; I will be sure to do some research to see if those things are available under any service in my area.
I would be keen to hear on how you progress with this. I had a similar problem when I was suffering with a bad episode of anxiety and depression, my GP was great, but the mental health services were shocking in their actions and response.
I am very sensitive to medication, so this is not an option for me. I have found psychotherapy to be very useful in the past and it has helped me enough, so that I am in a position to start helping myself again. After I received my diagnosis for autism no one would deal with my referral for mental health support in counselling and psychotherapy. Even the clinics and specialists I had visited previously rejected my referral saying 'they don't specialise with people who have my condition'. My GP was furious, but also powerless and after four referral attempts to multiple clinics, my GP said he was very sorry, but there was no else he could refer me to, but that he would be taking the matter up with the board. It's ludicrous and also discriminating how before my diagnosis, no one had any issues in treating me, but following my diagnosis, even though I am the same person they now refuse based on having autism.
Hi I am also having trouble at work, despite a report from my psychiatrist, to my employers, having had a panic attack yesterday and being advised not to rely on antidepressants as I have been on them for eighteen years. I am also on a claims casual basis, not a contract and my job is likely to end in mid July, I still suffer from stress and anxiety and feel the lack of support at this present time. The next time I have a crisis I will be referred to Social Services not the Mental Health team, but we as ASD people do need mental health support as well. I also have to care for myself, having no carer and at times life can be tough, so I feel for you in your situation.