Mental Health Services

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?

Parents
  • 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.

Reply
  • 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.

Children
  • Even the clinics and specialists I had visited previously rejected my referral saying 'they don't specialise with people who have my condition'. 

    That’s complete madness! It makes you wonder why these services are so complacent in treating people like this. It’s like they are completely desperate to refuse every referral they possibly can, even on scant grounds. Their actions certainly don’t give me the impression that they actually want to help people.