Mental Health Services

Dawn said:

they are supposed to have been trained

I found this free government provided autism training online, I have wondered if it might be interesting to sign up for the course and see if it's any good.

https://freecoursesinengland.co.uk/understanding-autism/

My husband did their cyber security one and found it interesting but rather a lot of reading stuff off the screen.

Indeed. So many of us have had that experience.

And yet since the Autism Act 2009, they are supposed to have been trained. Clearly, very few have been. The solution here starts at the top....structure, institutional culture, resources and training!

We may only be about 1.5% of the population but given that we are statistically massively more likely to run into MH problems, I think we need special MH services for Autistic and other neurodivergent people, preferably staffed by folk who are neurodivergent themselves. A lot of our problems with the system might then magically go away. We wouldn't be having our experiences disbelieved and invalidated, or our motives and behaviours misunderstood every time we speak to them.

It's interesting that you say you got better, quicker after dropping MH. I know the right help is out there. I found my own private Autism informed counsellor, who was a huge improvement and who certainly did not treat me like a child. I also saw a private clinical psychologist who was a specialist in neurodivergence and who helped me draft a medical passport for general health practitioners. She was great and absolutely got it.

But we shouldn't have to go private for this. It is massively expensive and can't be a luxury for the few who can afford it.

Suitable and beneficial for some, yes. But for people with Autism and other disabilities probably not. At least that's been my experience. When I was involved with Mental Health services they treated me terrible and paid no attention to my Autism diagnosis, in fact they acted as if it didn't even exist and disregarded it and how certain things affected me, like bright rooms, people yelling at me... I had so many meltdowns with them and they just sighed and told me to calm down. Eventually my mum decided we'd drop them and she would help me along with Autism specialist. I got better a lot quicker after dropping Mental Health services, they really did more harm than good and I would never turn to them again. They made me worse each time I turned to them and they understood nothing about Autism.

Good Lord!  You couldn't make it up!  You wouldn't get that from physical health departments.... You're too sick, so go away! I'm appalled and angry on your behalf.  Even if they haven't got the expertise, why are you not under their care so at least you've got someone to talk to, someone keeping an eye on you and some point of reference.

As for the phone calls - they are, of course, breaking the law there in as much as they aren't making reasonable adjustment.  

I understand they are under resourced, lack resources and expertise.  As far as that goes I am sympathetic and on their side.  But I think there is an attitude problem and an incredible failure to listen on the top of that.

You know, in society in general we are doing a really good job of breaking down attitudes about mental health and of encouraging people to come forward and seek help when they need it, but then we let every body down once they make the brave step to ask.  As far as I can see the only people who are ever helped by mental health are the easy cases; the mild anxiety etc.  Everyone else is in the too difficult to deal with pile.

I agree with Dawn, how many hours do you have?

The quick overview here is while waiting for autism assessment there are precisely 0 mh services, charitable or nhs, that are willing to deal with me. All but the mental health team, including stuff like talking therapies and IAPT who are supposed to be the first port of call, assigned my sh and other issues as 'too high risk' and 'too severe' for them. And the mental health team decided it was autism related so needed autism specialist stuff which they couldn't provide so discharged me.

This would have been reasonable if it wasn't for the fact that no one provides autism specialist services without a diagnosis, and the waiting list is years long. I'm still waiting, current prospective outcome is in another 6+ months and we're already well past the 2year mark. So while people are refusing me help because my mh is too bad for them, I can't get any help at all. I was originally told to 'come back if it gets worse/unmanageable' but when it did and I did that they just did exactly the same thing again. So yeah, there is a hole in support which is all too easy to fall into where everyone agrees you need help with relatively immediate effect, just not from them.

The other main issue that's autism related is that it is everything relies on phone calls, and I can't do phone calls. I can't initiate them, and if someone phones me unexpectedly I usually end up harming afterwards. This was discussed in every single appointment, and it was ignored every single time. I actually only just managed to get an IAPT referral (not that it worked) because my GP ended up filling it in out of desperation and then refusing to accept their 'the person has to self refer via a phone call'. They then refused me because I was too high risk for them but I very nearly didn't even get to that point. The mh team would never ever listen to anything about 'please let me know a time you're going to call' and when we discuss triggers and I say one of my biggest ones is phone calls, they would immediately give me a list of numbers to ring if I was in a crisis. why. 

Some of that is of course due to what is available, there is one text based crisis line in the uk, all others are in fact just that one with a different name. We really need more, shout is getting decidedly sick of me, but I haven't hit their frequency limit yet so they can't do much about it, I'm just a very long term user because once again, many years with no help whatsoever despite everyone agreeing I need it because I'm probably possibly could be maybe autistic. 

So yeah, two big things. One, mh organisations just flat out refusing to deal with autistic people, and two, everything being reliant on phone calls. 

Phew! How many hours do you have?

Feel free to message me if you are looking for views on particular areas. I'm glad some one is working on improvements in MH because God knows they need it.

I went to them with the medical and body phobias which were getting out of control right at a time when I needed major dental interventions. The procedures sent me into a tail spin of endless melt downs and dramatic stims that had me suicidal in the end.

To me it was obvious that MH were never really listening. Nothing they said seemed to relate to what I was describing and nothing was helpful, and in fact they were making matters actively worse - bigtime worse. I did not know I was Autistic at the time.

In the end, no matter how dangerous a place I was in we stopped talking to them. All they seemed to do was treat me like a very naughty school girl, have meetings and ignore my deep distress.

In the depths of crisis, I kept researching myself until I found an explanation for the Room 101 abject terror and the repeated melt downs and shut downs in or consequent to the dental intervention. Finally thanks to this site, I realised I could be Autistic and am now diagnosed.

It later transpired that a shrink I saw for 2 mins without ever discussing my mental health had slapped and EUPD diagnosis on file and no one told me. I had to spend a fortune disproving that to get it removed.

I have now seen my notes. My feeling was right from the get go, they were barking up the wrong tree, never believed a word I said to them and blamed me for not being "helped" when they were in fact treating the wrong thing.

In hind sight my Autism was stamped all over this from the get go and yet they did not see it. That much is because they are not trained and I can forgive that part readily. But that they stuffed me in the wrong box without telling me, did not believe my experience and actively blamed me and put me in the bin, has traumatised me and I will never, ever trust them again!

The first improvement they need is to recognise Autism when it is in front of them. The second not to make diagnoses of any kind for anyone without assessing properly and informing the patient. The third is when the patient is clearly describing something other than their preconceived notions dictate, they need to believe them. And then we can talk about adaptations to therapy and reasonable adjustments etc.

At the end of the day, I now know that there is very little MH could do anyway. Other than the anxiety, there's nothing wrong with me mentally and there is certainly nothing wrong with my personality. I now understand that the problem is in my sensory system not my id. No amount of CBT or other psychology can address that, adapted or not. So, even the best MH dept would be no use at all in my case. But they could at least "do no harm" and learn to recognise and understand Autism. They did quite a lot of harm and I'll have no more to do with them.

At the moment I am really struggling to access counselling. The problem with that is I get myself tied up in knots and blocked on certain tasks so easily, and I could do with some help for this, but one of the tasks I am blocked on is actually getting help for it! I have decided counselling or coaching might help, but I go look and get overwhelmed by the options. Some of the things they give you a choice of I have no idea about, like type of counselling, other things I don't care about, like gender of the counsellor or location as I would only access remotely by phone or video anyway. Then they would want to ask loads of questions, not all of which I feel are relevant and some are really hard to answer. Admin and form filling are very phobic for me (PIP is horrific). And I find it very hard to make phone calls.

I even tried asking my husband's counsellor for help! But although he tried he didn't seem to understand quite what my problem exactly was, although he did help me today decide that probably autism is the thing to focus on first (I have other issues as well and struggle to prioritise).

So I would say point of access is a consideration. Maybe have various paths of access as some of us struggle with different things. An explanation of the process of access and the process of the help would be useful so we don't have to worry so much about the unknown. A choice of in person, phone or video chat is vital as some of us cannot do one or two of those and it is different which for each person. Access needs to be easy, not too many hoops to jump through! A choice of an online form (with explanations for some of the questions depending on what) or being able to speak with a person to help do the form. It would be nice for some or all of the questions to have an option to write something not just pick multi choice, or to say I don't know or not sure or it depends or sometimes a and sometimes b or whatever! 

That's all I can think of for now. Thank you for asking, I'm glad this is being looked at.