Feel I am being penalised by community mental health services (CMHT) because of my autism

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?

Parents
  • I'm so sorry you are going through this. It sounds to me like they don't understand autism very well and can't think about the issues from your perspective. 

    I am concerned that even when I've spent a fortune in cash and energy to get an assessment I still might not get the services I need for the same reason.

    I would try Healthwatch and PALS. They should try to get a better service for you. They will guide you to the right places to understand your rights. If I come across any useful links, I'll post them for you.

  • Thank you for your reply. Very helpful. Yes, I had to pay to get a private assessment too. I feel fortunate that I could afford it. Many can’t. I just find it ironic that the services would say I need to get an assessment, and then say it’s a 2 year waiting list. What do people do in the meantime? The few specialist autism services available require a confirmed diagnosis. But they make access difficult for people by making an assessment so hard to come by. 

    And even when you are diagnosed, as you say, the services just don’t ‘get it’. Really needs to be more education. Generic Community Mental Health Teams don’t have a good enough understanding. 

  • Find your local Healthwatch | Healthwatch

    Here's the link to Health Watch (the NHS watch dog).  Try raising your concerns with them.  They should back you up to try and produce a better service.

    They will advise and guide on complaints, but first work to resolve the problems.  Ultimately if a lot of people go to them with similar problems they start championing issues at a senior level and they tap into the QCC

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