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J87
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12 May 2012, 12:10 pm

I have been unable to leave my house for years and find it difficult to talk to people especially those working in mental health because of my past experiences with them. I was told seeing a specialist on autism would benefit me, but of course they didn't refer me to anyone. Now years later I finally managed to open the door to a couple of people from my local NHS mental health team because my mum kept bugging them. I told them anti-depressants hadn't worked for me and that I would like an assessment for aspergers, they didn't even know what it was. They didn't contact my GP even though she was waiting for them and now they have taken me off there list again, but my GP prescribed more anti-depressants. I'm back at square one. I have been receiving incapacity benefit for 10 years now and have tried to see someone for an assessment during that time but no luck. I want to get a job and move on with my life. I know a diagnosis might not make a difference to my life but I don't know what else to do.
Does anyone know what options I have left? I live in London.
Thanks.



Wandering_Stranger
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12 May 2012, 12:35 pm

Go back to your GP and explain why you think you have Aspergers and take it from there.



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12 May 2012, 1:38 pm

I went to my GP, told them I thought I had an ASD (or rather handed them a piece of paper with it written on). They referred me to adult mental health where I saw a psychiatrist who had a special interest in autistic spectrum disorders in adults and who worked closely with the local autistic society. I was diagnosed after three meetings with him and a shed load of questionnaires. I struggle to talk to anyone about myself and dealing with mental health professionals is even worse than normal. I have always taken copious written notes with me to appointments to act as a prompt for me or to hand over if I can't speak. I do better if I'm asked questions about what I wrote than if it comes out of nowhere. I am now seeing a different psychiatrist and with her and my GP, I often type. So if talking is difficult there are other ways to communicate. The important part is to turn up for appointments otherwise and/or keep reminding people what they're supposed to be doing, as you have found out, you get taken off lists. I am very bad at getting in touch with people - because of this my GP always sets up the next appointment before I leave his office and so does my psychiatrist - they both know I won't get in touch if left to my own devices.


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YellowBanana
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12 May 2012, 1:45 pm

Oh and antidepressants never worked for me either. I have a lot of suicidal thoughts which everyone assumed came from depression but apparently it's from anxiety and my emotional dysregulation (i.e. tiny little things completely throw me off balance). I'm now on a mood stabiliser and on my worst days a low dose of an antipsychotic which has strong antidepressant properties. I still have a lot of difficulties and bad thoughts but I'm also doing much better than I was.


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HalibutSandwich
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12 May 2012, 6:22 pm

I don't know what advice to give since I'm going through a similar thing. I've had all the tests but the people who paid for them refuse to organize the actual diagnosis like they promised earlier. I tried going through my GP but he sent me to the mental health center who said they can't help me because I'm apparently not suicidal, schizophrenic or psychotic. Now I'm back in limbo again not knowing which way is forward. So I'm interested in what advice others can give on this also.

Oh, and I'm another one who has been off and on antidepressants for the past 15 years without any good coming of it. I'm sick to death of people trying to make me take them again.


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J87
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13 May 2012, 9:10 am

Thanks. I think I might write a letter to my GP explaining everything and see where it goes from there.



nessa238
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13 May 2012, 11:17 am

I've had no real support from mental health services apart from being prescribed anti-deprerssants, which Ive been on for a substantial part of m adult life and anti-psychotics for a short period after my Aspergers diagnosis, which I couldn't tolerate so came off them as felt they were having a very bad effect on me.

I was assessed by the local 'Healthy Minds' team in April and told that they were waiting to assign me to someone and that I would be on a waiting list for a while

I don't have any faith in mental health sevices as all and think and progress I have made has been inspite of their input rather than because of it. It's mainly been 6 monthly visits to see a psychiatrist and be told the same old rubbish.

I find that if I try and focus on doing stuff I enjoy like reading, researching stuff online or watching films/TV, I come out of depressive episodes eventually. I do have a friend living with me and I think this is a major aspect of keeping good mental health ie having someone you get on well with to talk to each day.

When I feel more motivated to do stuff I try and get as much done as possible as I know that the motivation often won't last that long. I jsut see it as havign active and non-active days and try not to castigate myself about the non-active days and try to at least get some small things done or learn new stuff online to keep myself mentally active.

You could possibly look for support groups in your area to attend.
The mental health trust in my town has recently set up a 'Make A Difference' group for users of mental health services and their carers to have their say as regards service provision.
I'm not impressed that they use the acronym 'MAD' for the group - I think this is flippant in the extreme - I mean are people with mental health problems meant to be mad then?? I thought we were supposed to have moved away from such primitive ideas and yet they are here using the term in what they evidently think of in a jokey manner for a service user support group!



Blindspot149
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13 May 2012, 11:28 am

I was in London in 1996 and went to see a doctor (GP).

I had been reading about ADHD (ADD as it was called then)

She hadn't heard of ADD.

When I mentioned that 15% + of children (at the time) had ADD, she stopped writing, put down her pen, crossed her arms an told me that this was 'normal'.

The body language was shocking and I thought her head was going to start rotating!

Good luck...


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lundygirl
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13 May 2012, 1:47 pm

Is there any chance you could have a home visit from your GP, or go for an appointment with someone to accompany you? You can ask your GP to refer you for assessment for asperger's - it would be helpful if you make notes about why you think you have asperger's, and perhaps the results of some online screening tests - eg the AQ test and the EQ test.

If you can't manage to see your doctor, you could write to them. Ask for a referral to be assessed for asperger's, and list your reasons for thinking you have it. Your doctor may need to complete a screening questionnaire with you - usually about 10 questions.

There should be an adult asperger's team that you can be referred to - the Community Mental Health teams often aren't qualified to do the assessments. Once your GP refers you, then you are 'in the system' and things should start to move forward.

The National Autism Society website is great for offering advice about seeking diagnosis - it explains what to expect, how the system works and all that sort of thing. They also offer an advice service - by email if you don't like using phones.



HalibutSandwich
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13 May 2012, 4:10 pm

J87 wrote:
I want to get a job and move on with my life.

I'm not from the UK but I was curious about how things work over there. Looking at the NHS site they say Incapacity Benefit has been replaced by Employment and Support Allowance (ESA) since 2008. It also mentions anyone on Incapacity Benefit will have to be reassessed under the new ESA guidelines by Feb 2014. It also says this:
Quote:
Getting Employment and Support Allowance automatically entitles you to other help such as free NHS dental treatment, sight tests, prescriptions and housing grants.

So I was wondering if it would be possible to get your reassessment done now and maybe they could help you with getting a diagnosis, including paying for it. That's similar to what I did here. Just that now they don't want to spend any more money on me :(

Just a thought.


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Wandering_Stranger
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13 May 2012, 5:10 pm

HalibutSandwich wrote:
So I was wondering if it would be possible to get your reassessment done now and maybe they could help you with getting a diagnosis, including paying for it. That's similar to what I did here. Just that now they don't want to spend any more money on me :(

Just a thought.


If you get a diagnosis on the NHS, it's free. You have to pay if you go private.