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caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Wed Oct 18, 2017 11:55 am

Thank you for your very informative links, and compassionate reply. Very much appreciated.

I am wondering what happens once an autistic diagnosis is given ?
I fear very much being left high and dry, having to deal with a life long and life changing diagnosis.

Part of my bpd means i fear being abandonned. In an ideal world you would expect support and councilling. My experience of mental health providers means i am expecting a diagnosis and a wave goodbye.

Lack of support is what i fear most. Sometimes things feel too big to deal with alone.

mihaela
Posts: 1073
Joined: Mon Nov 21, 2016 12:42 am
Location: Lancashire and Moldova

Re: support

Postby mihaela » Wed Oct 18, 2017 7:29 pm

Hi Caro, I'm sorry but I typed a long reply back to you, and somehow lost it. I'll try again tomorrow morning. I get up at 3.30am and my brain's getting tired now. x

caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Thu Oct 19, 2017 7:09 am

No problem , i understand everyone here has problems and may not be well enough to support. Xx
I am reading other people's posts, and feel guilty for not responding, but fear my words may not help.

mihaela
Posts: 1073
Joined: Mon Nov 21, 2016 12:42 am
Location: Lancashire and Moldova

Re: support

Postby mihaela » Thu Oct 19, 2017 9:54 am

caro wrote:I am wondering what happens once an autistic diagnosis is given ?
I fear very much being left high and dry, having to deal with a life long and life changing diagnosis.


That's a very good question. This was one of the two reasons for me seeking a diagnosis (the other was for official confirmation of what I'd already worked out myself). I went through hell over getting support after my diagnosis. A long story of incompetence within the NHS, which eventually ended in me being defrauded of nearly all my money and my house, by a 'friend' who wormed his way into my life as a kind of unofficial support worker. The Economic Crimes Unit are still taking statements from his other vulnerable victims. All this because the NHS tried to cut corners with me.

So, be warned in case they play the same trick on you. For over two years they sent me around in circles, ignoring phonecalls, fobbing me off, etc. which added to my stresses and problems - when they were supposed to be reducing them by supporting me.

Part of my bpd means i fear being abandonned. In an ideal world you would expect support and councilling. My experience of mental health providers means i am expecting a diagnosis and a wave goodbye.


Just as they happily abandoned me! Your experience sound pretty typical. I was told by an autism worker that I'd have to fight for the support I was entitled to, but the stress and wear of all that fighting nearly killed me. If you can, get yourself a strong advocate to speak up for you and do the fighting. We're not strong enough to do it alone.

Lack of support is what i fear most. Sometimes things feel too big to deal with alone.


Exactly! Me too! By chance support of a kind arrived in my life, when a friend moved in with me. She too has her own MH problems to cope with, but at least we're not fighting alone. I say 'of a kind' because her spoken English isn't perfect, and her state of health means that I don't always get support when I need it most. But it's so much better than having none at all.

At last I've been accepted for a second assessment. The earlier one did say I had autism, but it was inadequate and worded ambiguously, and an ignorant social worker took advantage of that in order to remove my support worker. This time round I'll make sure there are no loopholes.

I hope you won't have to suffer as I did, but 'forewarned is forearmed'.

caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Fri Oct 20, 2017 7:41 am

I think it is terrible that you were taken advantage of, and lost so much financially. I am so sorry you had to experience that.
My problem will be, that i need support so badly, my judgement may not be great. it is useful to have your warning about this.

Do you have a date for your new assessment ? It is a big thing to deal with emotionally, but worth it to get the diagnosis you need.
I was lucky to have two very nice ladies who did my assessment, but it was still a very difficult two hours.

It is good you have someone to share your struggles with. I understand when you say sometimes it is difficult because she too has mental health problems. I absorb everyone else's issues, so it is easy to get dragged down, and triggered. However, knowing someone else understands is a big help and support.

I have no friends, and no support other than a CPN. I find friendships too difficult, so it is my own fault I have no one to talk to. I have tried looking at on line forums for Aspergers, but there doesn't seem to be any UK sites that are current.

breatheinandout
Posts: 318
Joined: Mon Jul 17, 2017 10:03 am
Location: UK

Re: support

Postby breatheinandout » Fri Oct 20, 2017 10:57 am

Hi caro and mihaela,

Thank you both for sharing. While I do not know how it feels, I think that I'm learning a lot by reading about your experiences and I am sure other readers do too.

We cannot know truly how it feels to be in someone elses shoes can we? But speaking out does matter. Your courage in sharing your experiences has definitely opened my eyes.
Why did i pick such a long username?! Do call me Biao :D

caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Fri Oct 20, 2017 5:06 pm

Thank you for your understanding and thoughtful reply. It means a lot that people want to try and understand.

Being socially awkward and very anxious means I do not get to interact with many " real " people. The world would be a much better place if we could all accept each other for who we are.
It is exhausting trying to fit in, trying to be " normal ".

Your post reminds me that not all people are unkind, and that there are people who genuinely want to understand xx

caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Wed Dec 06, 2017 5:34 pm

Tomorrow I finally get the results of my ASD assessment.

I am not coping with the thought that i have spent almost 50 years being misunderstood, bullied, and made to feel that i am insane.
Of course, it may come back negative, but I doubt it.

My anxiety is unbearable, my mood dangerously low, and my thoughts are bad.

I am not sure why i am typing this. I suppose I feel very vulnerable and alone.

amaya
Posts: 731
Joined: Sun Oct 08, 2017 9:23 pm

Re: support

Postby amaya » Wed Dec 06, 2017 10:34 pm

You aren't alone. I am also right in the middle of a diagnostic process right now. It is exhausting.. but it means progress. Progress in knowing what the issues are, then we can work on the best way to deal with them, and then we can look forward to recovering to a life that is something we can live instead of just exist in. And these good things are starting to happen. Slowly. Stay strong :)

caro
Posts: 96
Joined: Fri Oct 28, 2016 2:21 pm

Re: support

Postby caro » Wed Dec 06, 2017 11:37 pm

Thank you Amaya. Your words make great sense. It is hard to see the positives when feeling so anxious, so it helped lots to recognise this.
I hope your diagnosis process is not too long,or painful .
I logged in tonight not expecting anyone to care. Thank you for proving me wrong x


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