Treatment

Hi, 

I'm on the waiting list of apparent no end for a confirmed diagnosis.

I've been back and forth through the local mental health services and now I'm on their kit list (keep in touch) where they call once a year to check in.

I'm apparently unresponsive to treatment and they can't offer any other help.

I've complained to the NHS and they replied today saying that the current waiting list in my area is approximately four years and I am somewhere on it; but they can't or won't be more specific.They blame underfunding and a dramatic increase of referrals.

I've even written to my MP who obviously blamed the former government and re-stated that the new government was going to improve services over time.

Where do I go from here?

Parents
  • That entirely depends what you're looking for, and which NHS trust you are under.

    If it's a piece of paper that says 'this is the problem' it may be worth looking into private diagnosis, or right to choose. 

    If it's a specific bit of help you could get after having the diagnosis such as adjustment at work, you may be able to get that help with a letter from the GP or mental health services.

    If it's treatment to make the bits that autism make difficult go away, that's not going to happen, but you can find new ways of helping and navigating them especially if you know that autism is the likely background.

    What are the challenges you want to overcome here? We can offer advice if they're things we've overcome before. 

  • I'm aware that the official diagnosis doesn't change anything other than the ability to ask for reasonable adjustments from my employer.

    The local M/H service have said that since SSRI/SNRIs CBT etc offer no real benefit to me, they can not offer anything further until my diagnosis comes through.

    I don't know what they can offer as there is no treatment, they just tinker around the edge (depression/anxiety). But since the usual treatments for these don't work for me, I'm at an impasse.

    I feel a sort of loss/grief but not from something I've lost or missed out on, it's just a feeling or weight of "unhappiness" (for want of a better word).

    I've been diagnosed with dysthymia and alexithymia. My head feels so cloudy and I can't focus.

    Hence, where do I go from here. Different medication, therapy or treatment (whatever they may be)

    I work, have a family, dogs, car, enough money to not to have to worry about it. In saying that something seems to be missing.

  • I know it’s not ideal but a lot of end up relying on self help of various kinds. This involves a lot of research and time - and there are no guarantees. At the same time there is hope in doing this - and it at least gives you a sense of control in how you approach getting to a better state of mind and a happier life.

    My son had over a year of CBT and got no benefit from it. I had some therapy from the nhs that was actually quite helpful - but only treated my ptsd and didn’t address other problems and long term anxiety problems. And that’s how we were ‘left’. 
    Medication made me worse - a lot worse - so that’s not an option. Both myself and my two adult children have an nhs diagnosis - and I think it’s well worth having that for various reasons. So I would recommend that people always try to get an official diagnosis if they can.

    In terms of overall mental health and self help - just try whatever you can find online and see if it helps. For me studying Buddhist teachings have been helpful, as has exercise, Vagal Nerve techniques, breathing techniques, getting outside in the countryside, music etc etc. Getting enough sleep helps. I don’t think there’s a silver bullet, I think it’s about trying a range of things, and this can include changing your perspective on how you see things and react to things in very subtle ways. For example when I feel ‘bad’ I fight it, I try to push it away, and I’ve learnt that this only makes it worse, and I need to be a bit more accepting of the fact that feeling bad sometimes is a normal part of life - and to be a bit more accepting of that. 
    There are no quick and easy answers. It’s more like writing a novel than a shopping list - it’s complex and takes time. But it’s worth it. 

  • I always like to explore options, hence asking the question. I try to meditate but quieting my brain is difficult, I've only once managed to fully get in the zone. I still do breathing exercises to achieve some sort of relaxation.

    CBT does nothing for me, I had a session with a psychologist which was a great chance to vent/let go, it was a great way to explore my thoughts and feelings.

    I feel as if I'm stuck in flight or flight mode and I can't break it.

    I've had hypnosis and acupuncture which had  very limited benefits.

    I'm very much aware the autism doesn't have a cure but I'd like to take the edge off some of the associated symptoms.

    I have music on most of the day and I used it as both a comfort and distraction on a daily basis.

    I also have Alexithymia so I struggle with emotions especially happiness and positivity which had lead to a diagnosis of depression.

    I've even considered trying to get a cannabis prescription to see if that would help.

Reply
  • I always like to explore options, hence asking the question. I try to meditate but quieting my brain is difficult, I've only once managed to fully get in the zone. I still do breathing exercises to achieve some sort of relaxation.

    CBT does nothing for me, I had a session with a psychologist which was a great chance to vent/let go, it was a great way to explore my thoughts and feelings.

    I feel as if I'm stuck in flight or flight mode and I can't break it.

    I've had hypnosis and acupuncture which had  very limited benefits.

    I'm very much aware the autism doesn't have a cure but I'd like to take the edge off some of the associated symptoms.

    I have music on most of the day and I used it as both a comfort and distraction on a daily basis.

    I also have Alexithymia so I struggle with emotions especially happiness and positivity which had lead to a diagnosis of depression.

    I've even considered trying to get a cannabis prescription to see if that would help.

Children
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