I'm Cured!!

[Mumble]

I'm as cured as bacon I've been discharged from my psych today - obviously I'm all 'better'. I don't know how I'm supposed to feel but I just feel really really alone and lost. :tearful: This was the one medical professional I'd found who 'got' me and who I trusted. I didn't look forward to my weekly visits to him, but I didn't dread them either and I liked being understood. Now I feel like it's a case of "well Mumble, you're smiling and you've got your sense of humour back, you're obviously coping, off you go". What none of these people seem to get is that I was doing well because of the support I had - all the problems I had that put me in the situation of needing support in the first place are still there but now the support that helped me to cope day to day with them and keep them at a manageable level has been taken away.

 

I know this is a problem of lot of you as parents face too, that your children seem to be coping so the support that allows them to cope is taken away. I just can't get why people don't see that it's the support that allows me/others to cope. Would I be too cynical to suggest that it's all down to funding (I know that in my case this is true as I was given an urgent referral and was funded for a private referral to get it ASAP)?

 

So what happens now? They've said someone else will contact me, but I have no idea when and it's someone within a department I have absolutely no trust or confidence in what so ever. All I can see ahead of me is a cycle of the same issues arising (as they would as they're intricately linked with the autism which isn't going to go away), needing support, being 'cured', repeat ad nauseam. It makes me very sad that that's the way things are set up - it takes no account of the life long nature of developmental disorders.

[Zosmum]

So sorry Mumble this sounds terrible but maybe this person will be nice and someone you can learn to trust but as soon as you feel you're not coping don't try to look as though you are, Say something even if it means calling your psych and demanding he/she either listens to what you're saying or will agree to see you

 

Good Luck

[TheNeil]

Does this mean that you're no longer a fully-fledged Aspie?

 

This kind of situation is very much typical of the NHS's approach to conditions such as ours - we've fixed the visibl/immediate problems so...you're cured. Err it doesn't work like that Mr Doctor chap. I was given a series of three appointments to see a psych in Harrogate and over successive weeks he managed to rubbish me, call the very existence of AS into question, set the awareness and understanding of autism back 300 years and, basically, achieve [insert rude word here] all. Then he announced that I was basically fine and didn't need any further help. Thanks for that. Same for more recent incidents where, because I was basically verbal, I didn't warrant any further help or support.

 

So what does that leave? Sorry Mumble but it's good old self-reliance and getting things done yourself (I think it was Ghandi who said that 'we must be the change that we wish to see'...whatever that means. Maybe wearing a sheet all day sent him mad). The medical profession will, as you rightly say, stay stuck in it's issue-support-'cured' cycle and, sad as it is, it does generally come down to an issue of cash. Only this morning on BBC's Breakfast there was an article about NICE (the most badly named organisation in history in my opinion) having decided that a certain drug used with liver cancer didn't do enough to warrant its cost. This drug was, of course, little more than a placebo with the only side-effects being that it could keep prolong people's lives for up to two years - you know, not that they'd ever want to put a price on someone's life or anything (as if) but, basically, those people weren't worth it

 

What I'd do (and this is me, it might not work for you, but you might want to give it a try anyway) is see if they can give you a kind of 'panic button' phone number so that if things are starting to go downhill and you're finding that you can't cope, you can call up and get an appointment without having to go down the rigmarole of GPs, referrals etc. If that fails, go and talk to your GP. Explain to him/her how you feel (I know, breaking another Aspie commandment - we not supposed to do 'feeling') and say that you're worried that without support, you won't be able to cope - can they suggest anything?

 

Then of course there are things that have to do as a result of not being able to cope last time. I know that this is easy for me to say (and not necessarily easy to do) but you've got to identify the signs that tell you you're not coping and have a plan (or plans) in place telling you what to do. This could work well with your GP (so involve him/her) so that they (and you) know that when you reach a certain point, there'll be a prescribed route. Just having that in place could be all that it takes to allow you to cope (i.e. knowing that you've got a 'safety net' means that you're no longer scared about walking along the tightrope that we call 'life'). If your GP isn't any use (or is the crusty, old 'hurumph'-well-we-never-had-these-problems-when-I-was-your-age-get-yourself-some-fresh-air-and-you'll-be-fine type) then make sure that you have at least one person (more than one is better - it covers holidays for starters) who can act as your 'safety net'. It could be a family member, someone on the forum or whatever but just knowing that you have someone who'll be there when you, metaphorically, press the panic button will make you feel a lot more secure. I'd offer myself but knowing that I was there in case you couldn't cope would probably leave you feeling as though you couldn't cope

 

All said and done, you've got yourself through a very bad situation and you've done everything 'right' (i.e. asked for help, responded to that help and got yourself up and going again). You've got to take credit for that. Yes you might have gotten down and failed to cope in the past but that's where that episode has to stay - the past. There's no guarantee that you will be able to cope in the future but...make with the positive waves (as Donald Sutherland kind of said in Kelly's Heroes).

 

As they say around these parts (which'll come in handy for the York meet-up as you'll be able to understand 'Yorkshire') , chin up lass (I know, I know, it's difficult to look up from the gold paved streets of Cockerknee-land )

[pearl]

Wot Neil said

with an extra <'> from me.

 

Just thinking aloud, have you ever gone down the social worker rather than the medical route? I speak as one who has singularly failed in my quest to get us/JP one over the years, but I remember a few years back seeing a TV prog about an Aspie guy who was living alone but had a sw he could ring whenever he was worried. With him it was daily living type stuff, he would ring his sw & talk about a situation that worried him & she would talk him through it etc. Might be worth exploring?

[ASue67]

Haven't got any advise I can offer but plenty of <'> <'> and I can give you a proper hug (if you want one!!!!) on Saturday as well.

 

You are doing brill hon and you will continue to do well............. echo what Pearl suggest about Social Worker. I am trying to get one for me (for other reasons than you) and it is because I need extra support to cope and everyone else is fobbing me off!!!!

 

Take care hon <'>

[Flora]

What I'd do (and this is me, it might not work for you, but you might want to give it a try anyway) is see if they can give you a kind of 'panic button' phone number so that if things are starting to go downhill and you're finding that you can't cope,

 

Mumble, when Bill was in crisis his consultant gave me an emergency number to ring for out of hours. Perhaps you could ask if there is an out of hours emergeceny psychiatric number you could ring for your local PCT, which you could keep at hand for any future crisis when the GP is closed.

 

Flora <'>

[Tally]

It doesn't sound like you have been discharged from the mental health team, if someone is going to contact you. Presumably this is about ongoing support. If you're worried at all, you should go back to your GP and ask what is happening, and see if he can hurry it up a bit.

 

A psychiatrist's job is very much limited to diagnosing and medicating. If your medications are working well, there is nothing more the psychiatrist can do for you. I think that is probably why you don't need to see him any more.

[LicklePaulie]

Just thinking aloud, have you ever gone down the social worker rather than the medical route?

echo what Pearl suggest about Social Worker

The problem here is that if you are adult and have accessed some form of education, work and family, the Social Services consider you very low on their list of priorities. We were told that unless we were "In Crisis" then there was nobody free to make an assessment - when we asked for clarification "In Crisis" means that our 2 year-old has to be in danger of neglect or abuse! Mumble's case (on the surface) is a typical one (as is ours) of "If it ain't broke, wait for it to break before we spend any money on it"... Whatever happened to "Prevention is better than cure"?

[pookie170]

Oh, Mumble, I don't have any advice (and what you've been given by t'others seems very wise to me) but am sending a <'> your way. I hope you manage to get something set up along the lines of what the others here have suggested.

 

Take each day as it comes, and know that there are so many people here on the forum who are ever ready with kindness and fab advice.

 

Take care,

 

Esther x

[allsetuk]

i also have experience of the harrogate NHS ...my son aged 6 has been discharged .with a "he is continuing as expected . contact us when he realises he is wierd" statement!!!

i couldnt beleive my ears

[pearl]

The problem here is that if you are adult and have accessed some form of education, work and family, the Social Services consider you very low on their list of priorities. We were told that unless we were "In Crisis" then there was nobody free to make an assessment - when we asked for clarification "In Crisis" means that our 2 year-old has to be in danger of neglect or abuse! Mumble's case (on the surface) is a typical one (as is ours) of "If it ain't broke, wait for it to break before we spend any money on it"... Whatever happened to "Prevention is better than cure"?

 

I agree Paulie, we have never got anywhere as we always coped so well!

Think Mumble might have a stronger case though with all the stuff that has happened over this year, if thats not in crisis then I dont know what is, they might think differently though.

[TheNeil]

i also have experience of the harrogate NHS ...my son aged 6 has been discharged .with a "he is continuing as expected . contact us when he realises he is wierd" statement!!!

i couldnt beleive my ears

Sounds as good as the psychologist I saw at the hospital who described AS as a 'rubbish bin term', and uttered the immortal "Well in the old days it was easy to spot the autistic kids - they were in the corner curled in a ball" (he may also have used the term 'dribbling' but my brain is trying to slowly erase the whole incident from my head).

 

I would dearly love to know when a six year old expects to realise when he's 'weird' (maybe he'll say something that you recognise as being 'weird' - something like "I'd really like to be a psychologist" ). And what kind of idiot would think that was a sensible thing to say? I despair, I really do

[Mumble]

Thanks everyone for your kind words and advice <'>

 

I know I'm feeling a bit stressed (ha - under-exaggeration) by this - I hit the pool (not literally - I didn't belly-flop) first thing this morning because I find exercise relieves some of the tension that builds up in me, and didn't get out until almost 5km later - feeling shaky through over-exertion now

 

I think one of the big parts of feeling 'lost' (I know, I know, not supposed to have feelings, breaking the "How to be an Aspie" code ) is that the person I was seeing could, from a more medical/what's going on in my brain (seriously, don't go there ... ) point of view, explain what was happening to me, reassure me about things I was experiencing/feeling (there are those damn feelings again), put a name to them and give me strategies for coping and getting through them. Now I feel really alone and that I don't have anyone who can help me with those things in the same way. He was also really good at (metaphorically) kicking other people and making them do their jobs, and now I just feel that everything is going to go back to the state of nothing happening as it was before (i.e. no support from uni etc.) which is in part how things got so bad before. The people I'm being referred to next are within my university, and I can't get anyone to see that this keeping it all 'in house' might sound positive but it means there's no one to check that things are working and everyone can get on with not doing their jobs without anyone kicking them.

 

Mumble, when Bill was in crisis his consultant gave me an emergency number to ring for out of hours. Perhaps you could ask if there is an out of hours emergeceny psychiatric number you could ring for your local PCT, which you could keep at hand for any future crisis when the GP is closed.

I have been given this and I'm sure it would help many people, but a phone number isn't much use for an ASD adult who is terrified of phones and in crisis

 

Think Mumble might have a stronger case though with all the stuff that has happened over this year, if thats not in crisis then I dont know what is, they might think differently though.

You would think, wouldn't you? It appears I'm still not enough though :lol: I really think there is an issue that people who need services are very often the people who can't fight themselves and don't have people to fight for them

 

And Neil - you asked if I was still a fully-fledged Aspie - that I am (despite breaking some of the code), I'm just not an insane Aspie anymore :lol:

[pearl]

I think you should email a version of your last post to your psych. It was so well put. Then at least he knows exactly how you are feeling & what you are worried about. <'>

[Mumble]

I think you should email a version of your last post to your psych. It was so well put. Then at least he knows exactly how you are feeling & what you are worried about. <'>

That's an idea - I'll think about it over the weekend as it can't do any harm. I had an email late this afternoon from the new person; already not boding well given that one of the reasons I was given for moving was "it'll be closer and all in one place". Well it's not - this person is on a uni campus nothing to do with my course or residence or the health centre, that I've never been to and have no idea where it is, and I haven't even been given a street name or postcode so I can't Google Earth it to familiarise myself with the location - they know I find change and new places hard, and then they go and spring this on me

[Tally]

It depends on your area how you can access support through social services because of AS. Some areas support you with the Learning Disabilities team, others with the Mental Health team. If you are asking for help on mental health grounds, apparently the magic words are, "at risk" and "self neglect."