Experiences of Crisis Teams?

I totally agree. As soon as they said that to me I knew I wasn’t going back there again. They weren’t on my son’s side - that was clear - so I didn’t want anything to do with them. This is why I’m wary of services - which like you say only leaves us with basically nothing. I think autistic people need therapists who are autistic. 
In fact this is something the National Autistic Society should be campaigning for - training for autistic people so that they can staff services for autistic people. We need each other, we understand each other and we can help each other. I know that because I have seen it on here - it’s wonderful. We need that support and understanding in actual services for autistic people - in education, in health, in therapy etc. 
It would transform these services for autistic people. 

Exactly.  It is part of autistic expression, self regulation and communication but they know nothing of this.  It's inappropriate and potentially damaging (i.e.encourages masking) to try to prevent stimming and I don't know how they can justify such an "intervention". 

I wish I'd just listened to autistic-led webinars and courses instead but then, of course, I didn't know we were autistic.  I feel misled by them and these days I listen mainly to autistic voices online.  Unfortunately that still leaves us without the tailored help we so badly need.  

I can understand that feeling! I find it hard to trust people and services to be honest. I remember taking my son to an nhs triage thing and it was really quite concerning - they were quite bossy and critical of both my sons behaviour (and he has always been really well behaved I can tell you ) - like things like him getting up and running around (stimming I know it to be now) during mealtimes. They were critical of us as parents for not stopping him from doing that! But it made him happy! Why would we stop him doing something that he so obviously needed and wanted to do?! 

Absolutely.  My husband now says, "I won't have them in the house!"  And one of my sons has threatened to punch them if they intrude.   So that needs to be born in mind when seeking help.  We might very well end up in a worse position.  :(

Yes - everyone on here is helping me to feel less alone too. That’s huge for me - me and my family have felt alone with our problems for a very, very long time. So thank you everyone x

Having been seriously ill (physically) last year I definitely know I WANT to live. I got close enough to not living to realise just how much I don’t want to die. It was an extremely traumatic experience. 
lt taught me just how preschools life is - and more than anything I want to stay with my loved ones - my husband and sons. But I’m so stressed and unhappy at the moment - what I want is to feel happy again and to be able to enjoy life. I don’t care anymore about material things or success. I just want to be able to enjoy life again. 

I’m sorry that you have not received the help and support you need and deserve. It seems it’s the same for virtually everyone on here. Everyone is working so hard to feel even slightly ok. I’m in this situation too and I’m exhausted by it. My son is the same. He feels like giving up. We have no help and barely even think it’s possible for us to get help anymore. Sorry to be so negative but we do feel so abandoned and isolated. I’ve come on here because I didn’t know where to turn and I find so much solidarity on here - which means so much to me. We are obviously not alone - and yet as a group autistic people seem to have little power to demand the help they need.

You have to make the decision, If you want the help and get your son the reasonable adaptations and the support he needs in order to become independent enough to work and thrive then it's something you have to tolerate. 

If the member of staff from social services is making you anxious you can make request for a new caseworker. They shouldn't be making you uncomfortable or making underhanded comments or assumptions.  

Can you tell me what the relaxation techniques you use are please? I could really do with some good relaxation techniques right now.

When making the appointment have the advocate with you, to help you navigate the conversation. The advocate should inform of reasonable adaptations that the surgery must take into account when you are making an appointment. it is a discriminatory act for a doctor surgery not to make reasonable adaption for someone who is protected and covered under the equality act.

Reasonable adaptations' doctors surgery's can make would be given you an exact time or 30 minute window for a phone appointment. this should make it possible for advocate to attend appointment with you. Reasonable adaptations could also include making an appointment with a doctor you feel comfortable with the appropriate training. 

You need to write a letter with your advocate to complain about about delays in response and thus treatment. if they fail to respond in 30 days i would go down the formal complaint system and the advocate should be able to assist you. This will lead to the surgery taking autism and Mental health training.

Yes - my sons college suggested we get a social services needs assessment and I am extremely wary of that. I had a friend who had social services involved with his family when his parents split up and he had a lifetime hatred of social services as a result as found the experience so intrusive and unpleasant. We hate any intrusion into our home life as we are very quiet and private people and hate anyone coming to the house. We even find people phoning us really stressful. I just think it would be too much and we would fear losing control of our situation and receiving heavy handed advice etc. The thought of Social services just makes me anxious.

Yes, we've been locked down in survival mode for a very long time now.  The actual Covid lockdowns have been a top dressing on a situation that was already dire.  I'm exhausted but I can't stop researching and need answers relating to:

severe, chronic burnout (years!)

extreme reclusivity

lifelong sleep issues (not the usual how to get to sleep and stay asleep but rather the physical and psychological damage that seems to take place whenever my son sleeps and can't control his posture (possible hypermobility issues) plus extreme emotions on waking from old patterns and trauma re-emerging every single time

extremely poor hygiene (what on earth to do when an adult is deemed to have capacity but then never washes or cleans teeth)

trauma (incl. intergenerational trauma)

The usual responses, even from autism charities and some advocates, involve turning to services that aren't geared towards autism and which we've already tried.  So many times, the same advice about going to your GP, contacting Mind or Rethink or Crisis Teams or the Samaritans etc etc, until my mind is in a whirl from disbelief that really there's nothing there that helps us. 

I'm aghast to think we're on our own, but it increasingly looks  that way.  I do find some information and upliftment from the work of Aucademy, Ausome Training, Kristy Forbes and Kieran Rose, but much of this still focuses on children and younger adults or on individual experiences which i can't really translate into how to help my adult sons. 

They are doing their best to help themselves, but often in ways that, at least from the outside, seem self defeating and often damaging.  It's very hard to find a way in and I have notepads with increasingly refined formulations that I hope will help.  But basicially all I'm trying to do is love them through it, provide person-centred support and hope for the best.  It doesn't seem to be enough but it's more than my parents had.   

I wish I had more and I wish I could offer more help. 

Hats off sir. I am typing not even understanding your actual position. Hope you find what you need. I seen your words mate, just don't give someone your time that needs your money the scamming cunts. OK I don't know you but go river fishing or get on the moors. Or knitting. Just that if someone sees things it's free to talk as you like. God bless

I’ve worn myself out - I’ve had years and years of trying to get help for my son (and mainly failing),  then trying to find ways to help myself because I was so burnt out and stressed. These last two years of pandemic haven’t helped. Well - the first year wasn’t so bad (at first we quite liked the lockdown as it was good to not have to engage with anyone or go anywhere) but the second year has been horrendous. I’ve always researched and researched for ways to get us though but we always seem to be in survival mode rather than actually thriving. 

I have very similar feelings.  I often think that I can't bear any more, but then I somehow keep on going, always looking out for something which might help.  I wonder whether I've somehow been trained to expect an expert for whatever physical or mental health issues we face.  We're always encouraged to seek help, after all.  So I keep on seeking, even when there's nothing there.  This even drives me to imagine that the Crisis Team might be better this time, I feel so desperate.  

I sometimes reflect, though, that many of the issues my sons are facing are also somehow within me.  Maybe they've manifested in different ways, but the underlying feelings might be the same.  So even while I'm looking for external help, I'm also drilling down into myself.  Maybe somewhere I have an "inner expert" who already knows quite a bit but is unused to articulating and applying it.  I only discovered that I'm autistic just over 3 years ago, after all, but my unrecognised autistic experience has obviously been building up all my life.  I suspect I need to really tap into that.  

Yes. We need something like this. Me and my son are in crisis now and there’s nothing we can access that actually helps. We feel so lost. I know what we need in many ways but it doesn’t exist (not that I can find or afford anyway). I had to put something on my calendar for later in the year and found myself thinking ‘will I still be here then?’. Not that I want to kill myself it’s just that I can’t go on the way I am - I feel so stressed that it almost feels like it could actually kill me. That probably makes no sense but it does feel like that. I was thinking today that I’d like to take a tablet that let me sleep for a month - so that my brain could have a proper rest. 

Yes, I am increasingly aware that we are forced to piece it together for ourselves.  And actually, even when there are no immediate answers, the sense of community and understanding is comforting in itself.  Plus when we have more answers, we'll share them. 

Dear God. You guys are making me feel much less alone. Thank you. But where is the genuinely "helpful" help for all of us? Bless you. No answers for you, but know I'm thinking of you.

Yes, we did have them coming round for a while, followed by the early intervention team.  I wish I could say that this was helpful for us but really they just seemed to give generic advice and information, of the sort that I could easily glean from reading around or searching online. Nothing tailored and no mention of autism at all.  

I have my own relaxation and self care routines which I've developed over the years, but in spite of this I've been unable to really help my sons.  And this is weighing on me as we get older and more ill.   

I got the impression that they were better suited to helping with more typical presentations of psychosis rather than a kind of delusional outcropping due to the chronic stress associated with growing up as an unidentified autistic with no support.  And when nothing they gave us worked they kept retrying the same things, the same meds and approaches and reiterating offers of psychotherapy which I knew our son wouldn't accept anyway.  

Overall, we didn't fit with their ideas of what to do, we exhausted their limited range of options, and then they discharged us "to the care of the GP".

In effect, they simply reflected our problems back to us with comments like, "It's a pity he won't engage" (We know!  That's what we're asking for help with!) or, "We've never had anyone so reluctant to talk with us" (Thanks for placing us outside your range of experience and making us feel even more unusual and isolated!) or "Bless.  He's very ill!" (Yes, again, we know.  We're asking you what to do to help with this!).  

Yes, "screaming in the darkness" would summarise it for me.  I'd like a private therapist, but really they'd have to be able to offer guidance on some complex and difficult family situations.  And this would take us into areas governed by the triple harm rule and confidentiality matters because I'd be discussing my adult sons situations - without their permission but it's all impacting me quite severely.  

The GPs seem unable to help and just give me their best, empathising "That must be hard" routine without giving me any clue as to how to manage.  And the local autism charities would give me "help" (in the areas of socialising, coping with anxiety and working - all things I've already worked on over the years) rather than helping me to help my sons. 

It seems that my sons would have to ask services themselves but I know that they won't.  Probably not ever after all the bad experiences they've had with services   And that's their right, of course, but it leaves us as parents alone and trying (and usually failing) to cope with some very difficult issues.