Post diagnosis care

Hello all,

I was diagnosed in November, and I had a series of follow up group sessions which were talking about what autism is and how it affects us. After that, however, there's not been anything from my GP or anything else, do I'm now just wondering if that's now it. It kind of feels like someone has handed me a spear, shown me how to stab things and then sent me of into the woods to see if I survive. Is that really it? Am I now on my own?

I suppose I just feel a bit lost at the moment. I know I have difficulties with things. I can now name why I have difficulties with things. But I just feel like I have no real way of managing those difficulties. I'm not even sure what I'm hoping to get out of putting this here either if I'm honest.

Parents
  • There really is no follow-up. I had a little support in the charity sector, but that was it.

    Further to Autonomistic's comment, I also feel that different autistics present in such different ways, and have such different needs dependent on other factors (degree of financial (in)security; type of workplace, if any; family situation) that a lot of advice I've seen online in places such as this is often unhelpful to me as an individual. I'm not really sure what kind of advice would really be useful to me or if it even exists..

  • I think all of this is so highly individual.... and it's not like the current mental health support is working great for neurotypicals either, let alone autistic people... There are so many people that are facing mental health issues and burnout- I have recently quit my job and I have a really bad burnout. Now I have found out that two more people at my former work are suffering from burnout at the moment. There are so many demands and stress factors in life and I don't think we are really taught to deal with these- I think they really should teach people skills to deal with anxiety and stress at school. That would be much more useful than some of the other things they try to teach us there.... 

    I am sure you will figure out what works for you eventually as well! That's what I hope for myself too... I recently was sent some resources from an NHS CBT and anxiety management course and I took away some useful pointers from there. I think it takes time and it is easy to not see that we progressing. I took away a lot of tips from these forums too. It feels like I am doing worse than ever, but I think things are probably progressing somehow. But I totally agree that there is a lot of unhelpful advice out there.... also from professionals... I think one of the worst I have come across was one professional spending weeks convincing me to ditch my belief that 'I can do almost anything, if I work hard enough and put my mind to it'. (She claimed it was stopping me from accepting help...). Then the other advice that really was counterproductive for me was when they encourage socialising etc when you appear depressed (though I think I was actually burntout)- only recently I have learnt that when I am burnt-out and I push myself to see people, it just backfires. I need energy to socialise (and I do sometimes like to see a friend 1 on 1, but I need to be in right frame of mind and have a minimum of energy to do so) So I think for years I was trying to fix my issues by pushing myself and always doing more, rather than actually stepping back and embracing rest. 

  • I am very recently diagnosed too (although it only confirmed what I had known for years really) and I feel the same - you get a diagnosis but then you’re on your own in terms of any kind of support. My youngest child was diagnosed as autistic about 12 years ago (he’s an adult now) and then my eldest was also diagnosed last year. So I’m well aware of the lack of help available. 
    As Ann rightly says neurotypical people with mental health issues are also being severely let down by the NHS. Services in general are run down and underfunded. 
    So we are back to ‘self help’ most of the time. In our family we are constantly working to try and find ways of ‘self help’ but it’s far from easy and sometimes I feel absolutely exhausted just trying to help all of us to avoid a crisis level of either anxiety or depression etc - it’s a pretty constant battle just to be ‘ok’. 
    It’s like that metaphor of a bucket filled with water - when the bucket is already full the majority of the time just a few drops extra can make it overflow - that’s how it feels for us. We are just about coping and then something will happen and it tips us over the edge. My husbands parents are both dead and my ‘original’ family are not supportive (in fact quite destructive) - so we really are on our own trying to manage. 
    Anyway - I realise nothing I’m saying is helpful to your post - but I just wanted to express solidarity and wish you well. 

Reply
  • I am very recently diagnosed too (although it only confirmed what I had known for years really) and I feel the same - you get a diagnosis but then you’re on your own in terms of any kind of support. My youngest child was diagnosed as autistic about 12 years ago (he’s an adult now) and then my eldest was also diagnosed last year. So I’m well aware of the lack of help available. 
    As Ann rightly says neurotypical people with mental health issues are also being severely let down by the NHS. Services in general are run down and underfunded. 
    So we are back to ‘self help’ most of the time. In our family we are constantly working to try and find ways of ‘self help’ but it’s far from easy and sometimes I feel absolutely exhausted just trying to help all of us to avoid a crisis level of either anxiety or depression etc - it’s a pretty constant battle just to be ‘ok’. 
    It’s like that metaphor of a bucket filled with water - when the bucket is already full the majority of the time just a few drops extra can make it overflow - that’s how it feels for us. We are just about coping and then something will happen and it tips us over the edge. My husbands parents are both dead and my ‘original’ family are not supportive (in fact quite destructive) - so we really are on our own trying to manage. 
    Anyway - I realise nothing I’m saying is helpful to your post - but I just wanted to express solidarity and wish you well. 

Children
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