Post diagnosis care

I agree with this, particularly about depression.

I agree Ann. I feel myself and my son keep in our ‘safe’ routines but they can also be a sort of trap where we get stuck in ‘grooves’ of thinking. We’ve had a lot of upheaval and change over the past couple of weeks and although it’s been hugely stressful I think it’s also been slightly helpful to be forced out of routines (possibly anyway). Now we feel very shook up and unsettled but I’m hoping that it’s also been a bit of a circuit breaker on some of our more unhelpful mental trains of thought. 
In previous eras people used to go to Spas by the coast or in the mountains when they were suffering from  ‘nervous exhaustion’ - to have complete rest. I think I’d benefit from that sometimes. 

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. 

yes now I am also in a state of 'I can't do anything' and just feel like a failure mostly... It's weird but I think I also got used to struggling and feeling helpless etc- and getting back more energy and feeling better is also a change and it feels scary. I know i can stuck in routines too that are really not good for me and despite knowing that changing it can feel almost impossible. It feels safer to stay with what we know even if it isn't good. Not that I am suggesting that we can just 'decide to feel better' - I wish it was that simple. But at least for me I think resistance to change is something that subconciously is also holding me back. 

I sometimes think depression in a way is also our body's way of telling us something in our lives isn't right. I think often professionals neglect that aspect of it and instead focus more on 'internal' issues 'ie there is something 'wrong' with this patient, that is why they are depressed'. 

Ann :) said:

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'.

To be honest, I probably have the opposite problem of being trapped in a "learned helplessness" situation of thinking I'm never going to achieve anything I want and should just accept a miserable, or at least reduced, life (reduced in content, not years).

I agree about "pushing oneself" when depressed. I struggled with what was diagnosed as treatment-resistant depression for many years, but in retrospect some (not all) of it was autistic burnout and pushing myself was not always the right thing to do.

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. 

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..

Yes sadly that was my experience too.... I was diagnosed a few months ago at age 25 and I thought I would maybe get access to some more specialised help, but there is nothing for autistic adults in my area- I basically just got the letter from the consultant and he did warn me not to expect anything  from GP ... and that was it.  I felt quite let down. I told my work and I got the 'everyone is a little autistic' response. I didn't know what adjustments I might benefit from so I didn't handle it well and I got no support at all...

I am actually starting a PhD again so I'll be a student and I decided to tell the university and I actually had tears in my eyes when they were telling me about all the support I would be able to access (mentoring, social groups, a support document drawn up which is shared with relevant people). This was the first time my diagnosis allowed me to access more support. It's not right that there is nothing for adults. I really wish they would change that. 

That is somewhat disappointing but I can see why it would be the case. This really isn't our world is it?

There is a complete lack of support for autistic adults. It is somewhat a postcode lottery, some areas don't even have the follow up group sessions you were able to access.

Mental health services don't want to know as autism isn't a mental illness. Social services don't want to know unless the person also has a learning disability. Both will signpost here. There are some charities who can help with specific things such as gaining employment but that is also a postcode lottery.

As autistic adults we are expected to be able to advocate for ourselves, work out what reasonable adjustments we might need and to be able to communicate those needs effectively to people with no understanding of autism. As you can understand this doesn't work well in practice and the things we have difficulties with can become overwhelming and insurmountable.

My solution, for what it's worth, was posted here recently. I can't see anything improving very much anytime soon.

https://community.autism.org.uk/f/miscellaneous-and-chat/30810/if-you-came-into-a-lot-of-money-how-would-you-invest-it-to-help-the-autistic-community