Oh boy; mental health services...

... just reading through a SARS release of my MH records.. 

Anyone else done this? 

The degree to which they have failed to understand or recognise an Aspie, when she is right in front of them is staggering in 2019,. I have to forgive the ignorance regardless  But in the absence of understanding the readiness to blame and misdiagnosed me and then hide that from me, is really quite unforgivable. 

So much hidden under guise of "therapeutic privelege" . Dear God! No wonder that never went well!

I can never trust them again. But, I will fight for something better for others.

  • Trust me I know they don't get much it's partly why I don't bother. Don't get me wrong I have my records and was lucky enough to get them but even I thought they clueless. For example they said has an IQ of above 120 with out even running an IQ test like how does one even get a result if you don't test it accurately. When I talk to a councillor of a therapist I feel like I'm talking to a gold fish with a blanker exspresion on its face then there is on my blank expressionless autistic face. 

  • Yes, indeed.  I have medical phobias which they were trying to treat with CBT and like approaches for years.  when I was getting nowhere they blamed me to the point of misdiagnosis a personality disorder and chucked me in the bin. 

    As soon as I realised I was autistic, I understood why CBT would never work.  The cause of my problems with medical treatment NEVER had anything whatever to do with anything I thought.  CBT had been just gaslighting me.  The problem was that every medical procedure had been a literal, not an imagined, trauma because my sensory system was behaving differently to other people's.  The experience was real, not imagined and could not be changed by thinking about it any differently, only by the general medical people handling it differently in light of my different neurology.  I'm not even sure now this fully meets the criteria for a "phobia".  A phobia is an irrational response to something, but given what I felt was actually real all my life, my response wasn't all that irrational.  It was a normal response to an atypical experience.

    You really must insist that if you are autistic, your autism needs to be at the core of any treatment not a bolt on, or worse and irrelevance; because you will be sensorily experiencing the world differently, thinking differently, processing and analysing information differently, communicating differently, processing, expressing and interpreting emotion differently.  They can't ask you to do any therapy like an NT, if you aren't an NT.  You need to do it like an autistic person, because you are an autistic person.

    If the NHS lets you down and you have the means, find an autism informed private therapist.  They are out there and they know how to accommodate.  Better yet, a therapist who is on the Spectrum him/herself.

    Meanwhile, there are some good books and videos out there written or done by people who know what they are talking about.  Any talk by Dr Hendrickx on autism and anxiety and Luke Beardon's little book on anxiety and autistic adults.

  • Oh thank you, I will have a look for Spectrum live. I think it could be beneficial for me to watch. I feel the support I am getting at the moment is counter productive for me. I think it will be easier once I've been diagnosed and they can look at things from a different angle.

    Currently I don't believe they are giving the correct help.

  • You might want to see the live stream 'Spectrum live' which this website broadcast today.  It was all about reasonable adjustments in therapy for autism.  The professionals should know that your autism will affect your therapy.  I start really pushing the point that you feel they need to respond to you 'as if' while you wait.  You can wait an age, getting no support, or inappropriate support and sometimes if they don't account for your autism. The support you get can even be counter productive.

  • My mental health isn't at its best right now. I can't turn to my parents for support, they don't understand and last told me that I need to pull myself together. Very unhelpful.

    Professionals are ok. I do it all in secret don't want my parents knowing. I'd never hear the end of it. The professionals are ok but whenever I mention the possibility of autism they completely ignore it. I know I'm not diagnosed yet but I think I will be soon and it will come out that I'm autistic, but the professionals aren't even weighing it as an option.

    Very confusing for me. I wish I had more people to talk to about it in my life.

  • My GP has on their internal system and have assured me there is a flag on the local hospital system and the local ambulance service.  It was mental health that had received my diagnosis and had not flagged it and their systems certainly should.  It has been done now.  Maybe our local systems are different to yours.  

  • You probably have a dept called PALS in your local NHS.  They can help.

    Otherwise, just write to the Data Protection officer at community mental health saying you want a copy of all their records whether paper based or electronic, anything from A&E, psychiatric out patients or the crisis team.

    Be aware they must legally react third party information, but there shouldn't be much of that. They might react anything which "could cause you harm", in other words they can hide anything they think might upset you. If you are keen to read that whatever it says, I'd include a line stating you don't want anything withheld for that reason and you just want the truth for your own well being.

  • Yeah, just found out that services didn't even flag my records that I am autistic when I gave them my diagnosis and profile report. There is no evidence they even scanned those documents to the system.

    Seriously??? The very thing that was behind my medical phobias all along, the very reason CBT does not work, and the most important thing they could possibly know about me. What did they do with my diagnosis, put it in the bin? Grrrrr...

    I do now have a complaint in re the previous misdiagnosis and the way that breached all the NICE guidelines. The investigating officer is now having tidy up all these things for me. She put the flag on today, five months after I gave them the evidence.

  • How do you write to data protection Dawn? I'm just wondering if it's by post or email. I dread to think what my records are like but I'm interested in knowing all the same.

    I hope you're in a good place at the moment hun.

  • I know right! It's ridiculous. Autism is my primary diagnosis but it's the least recognised one by my doctor's.

    Thanks Dawn next time it happens I'm going to say that and see what they say and suggest. My treatment needs to be more autism friendly.

  • Indeed! No mental health condition can be adequately understood or addressed for us without our autism being recognised first.

    Try correcting them every time with "Hi am Phoenix, I am autistic and by the way I have schizophrenia". Whatever they propose as a treatment plan, I'd asking; "have you accounted for the fact I'm autistic in that and how?"

  • You can write direct to the data protection officer for mental health services and ask for a copy of all your records.  It might bring up a few angry feeling but it will allow you to see inside their heads and grasp just what they don't get and misinterpreting. You might ultimately find that empowering in your dealings with them as you them be able to talk direct to the errors in their thinking.

  • Goverment ***'s right  and I read through a bit of mine when I got the paper work back with my Autistic assessment said I was like 85% out of a 100 ASD mild depression but high levels of anxiety or something high IQ at above and beyond 110. And something ellse haven't looked it in a while though as my my mum keeps all my medical records.

  • Why do you think most of us don't bother with a mental health team anymore and just let our brains rot till we go mad cause the mental health so called professionals working the NHs are Idiots. There's no such thing as help after an autism assessment cause the doctors are more clueless than us. But yeah that sucks if you know you are you don't need a peace paper to prove it we accept as you as autistic 

  • It's terrible isn't it. Mental health services really have no idea about autism. I don't think they even try to understand if I'm honest. I've tried explaining it, my needs so many times but it's like hitting head in a brick wall repeatedly. At the end they still make me go to hospital.

    It's like whenever I'm introduced to doctors or nurses it's "this is Phoenix, she's a schizophrenic." Never mention the autism which I feel should be mentioned first.

    I'm trying to fight to make it better and easier for others as well.

    All the best x

  • I found out 5 years ago that in kindergarden a doctor stickered me 'a difficulty child' and it stuck, everybody used me as a pincushion knowing I'll be the one blamed anyway