Getting support in the UK?

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Hi all,

Just wondering what support there is for us elderly aspies here in England. (Heh, well I'm 36, and have the face of a 26 year old but with Gordon Ramsay's forehead) Btw I was diagnosed 11 days ago.

I've had depression and anxiety more or less continuously for 2 decades - it was first diagnosed shortly after I started at university. I did see the university counselling service a fair bit - they helped me with a few day-to-day living problems, but I wasn't really ever able to communicate my feelings to them.

I've also had drug problems for a long time too. Seroxat + cannabis got me through university. The last 4 years have probably been the most serious, where I was completely wasted on opiates every weekend - it was really the main thing keeping me going. That had to stop at the beginning of this year when I started developing psychosis, I seem to be acutely sensitive to any substances now. I did get to see the local surgery's visiting counsellor, but they only give you 6 sessions max, so didn't achieve a lot, other than it ultimately leading to my AS diagnosis. And I'm on venlafaxine now, which seems to be working better than other antidepressants I've had.

I've been unemployed for six months now, and don't feel good about going back to the particular software industry I've been in for 13 years. It's always been hard, but the industry has been changing, getting less suitable for someone who's ok at sitting in the corner being clever, but who's not much good at being flexible, and communicating on-demand, or in groups. Also the local companies I worked at have closed (not my fault ) and I hate travel, so options are limited anyway. (I vaguely wonder if it's feasible to take another degree, and hopefully not screw it up this time!) On the plus side, I'm comfortable enough spending time on my own interests, and have some savings + gf's job so I don't need to claim benefits.

Since my diagnosis I've had lots of fun and excitement in these forums finding 'my people' and recognizing all my aspie traits, and developing some self-understanding for the first time. I'd always blamed my difficulties on a stressful and impoverished childhood.
I think I'm now in the 'shock' phase, and am feeling some real fear, I think. It's clear that I have some real disabilities.

I'm not clear on why I've never been passed to a psychiatrist, or that sort of thing. (Other than for 90 minutes for my AS assessment)
Even after a feeble suicide attempt at 19, which left me with ugly scars for life, there was no sort of psych evaluation at the hospital. I do wonder if I was wearing my usual socially-acceptable-inane-grin, so they thought I was just messing about and not in any real trouble?! !?

Heh, so that's my tale of woe. Can anyone suggest if any support is available in this country, that might be useful for me (apologies that I can't really explain what it is that I even want)?

thank you!
WB

That 90 minute evaluation you got means you've already been given more help than most adults get out of the NHS.

Sorry dude, but I've just came to the conclusion that if you;re not going private then you;ve got to pretty much go it alone. Wish I could be more helpful, but sorry, get used to dealing with this without professional help.

I guess the lack of replies answers your question, sadly

When I was diagnosed, the psychiatrists last words (to me, I assume he's spoken to others since then) were: "of course there's nothing you can do about it. If you were a child, there's lots that can be done, but at your age there's no support available. Here, I can prescribe you some anti-depressants".

The UK government is making noises about supporting adults on the autistic spectrum. Only it seems to be just that - noises, with no substance. Promises that all councils should have "mission statements" and "leveragisation of community synergies". You know how they waffle when they want to appear they care about something other than their own fat egos, whilst doing absolutely nothing real.

Somewhere online , I found a report of the state of AS support in the UK. It was actually quite damning and basically said there was nothing for adults. Poignantly, it said that the vast majority of adults with AS are invisible, struggling along totally unsupported and unknown to the health care authorities and only appear when they do something drastic, such as commit suicide.

Looking at the experience of gays and racial minorities, we probably have to go on high-profile marches and get our heads bashed by the police a few times before society makes any concession to us.

And who's got the good news for me?

Yep, you guys weren't kidding were you...I spoke to my GP today, asking if I could get any kind of talk therapy.

His plan is to put me on the "complex needs service" route. Dunno if anyone's come across this before? From the website it appears to be a programme designed for offenders and people with personality disorders, doing various group activities with a focus on intensive group therapy (with 18 to 24 people). I'm trying to avoid getting all whiny about this, but that really doesn't seem to be very suitable - or am I being too negative?

Otherwise he mentioned CBT in passing, but only to say that there's a long waiting list for it, and we can discuss it in a month when I come back for a repeat f***ing prescription for antidepressants.

Sort of wish I didn't get my dx now, at least I wasn't going out of my mind with anxiety and frustration before!

thanks guys

I'm getting no support at all, apart from my GP who said if I got depressed I could have antidepressants and if I got anxious I could have sedatives. She looked at me just after she'd said that as if she wanted me to say "fair enough" or something. I just raised my eyebrows and remained my usual inscrutable self - she looked slightly nervous, I thought. Since then a NHS consultant has written to her explaining a bit about the nature and needs of AS. I look forward to meeting my GP again one day and asking her what that letter said and how it's changed her position.

But really I've no great problem with trudging on alone with AS. One thing I don't want is some domineering ratbag laying glib opinions on me about what I should be doing. There may be some wonderful therapist out there just waiting to knock my socks of with their patience, respect and expertise, but I suspect it would be like looking for life on other planets - probably out there somewhere but you could die of old age searching for it.

So for the time being, I'll stick with my own horse sense thanks. I seem to be quite capable of making friends, and the bosses at work don't seem to be much of a threat to me now they know of my disability.

Its basically a post code lottery of what services you get.

The National Autistic Society has the "paris" system on their website that is basically a database of any local groups or services provided in your area. That would be your best start. Beyond that the NAS won't be much help to you im afraid. They were founded to support parents of children with autism, and despite what they claim, they still fundamentally are an organisation focused in that way.

I was diagnosed at the age of 10 by pure luck and my mother not accepting a diagnosis of mental retardation. For awhile I was one of the only people i knew in my entire county who had AS in the early 90's.

I wouldn't jump to the conclusion that being diagnosed in childhood means all of this magical support comes out of the woodwork. I was fortunate to get speach and language therapy and that was pretty much it. Everything else was simply trial and error, discrimination and outright hostility towards having a "label" that no one at the time (even now) really understood.

I would be wary of approaching the mental health services. At the end of the day they have a way of doing things and approaches that work for mental health problems, but they have very little idea of dealing with AS and are poorly trainned and equipped to understand your needs.

Well thanks for your input, guys. And I'm glad to have 'met' you all.

I just saw my doctor again and got fobbed off some more

However he did give me a copy of the letter from the service that diagnosed me. Now I'm wondering if I even have a formal diagnosis? Because the letter just says:
"I discussed the case with Dr ******-****, Consultant Psychiatrist, and we do feel that ***** is probably suffering from Asperger's disorder."

Also can anyone explain "...and objectively I felt he had a flat affect." ?

Sigh, I wanted to get a referral or something to maybe get into therapy or see a counsellor or something. Doctor said something like "I understand your background/parents etc. have profoundly impacted on you, but it's not a good idea to rake over the past". He thinks I should go and get a job, but it's not that easy, and it doesn't seemed to have helped my mental health in the past, AFAICS.

I'm getting really confused now because I have absolutely no idea how to get on with my life and am sort of paralysed more-or-less. I'm really sick of wrestling with this doctor to get nowhere, I'm sure he doesn't get ASD stuff at all. I had to make a right fuss in the first place to get the referral for AS assessment, because he was of the "it's just a label" school of thought.

Can anyone see my doctor's point-of-view here? I mean, I don't just need people to go along with me, just to be nice, and say "yeah he's an idiot" - I guess I should be told if I'm obviously just stuck in some sort of whiny spiral of self-pity, and am failing to help myself.

Also I'm annoyed cos I stopped smoking, and I didn't get offered any cash prizes I thought they had cash prizes for that now?

cheers,
wb.

The problem is that the medical profession has only comparatively recently become aware of Asperger's Syndrome and to understand it's effect on those who have it. Over the years I've had a great deal of therapy but none of it worked long-term. Sometimes it acted as a kind of 'comfort-blanket' - the feeling that at least there was someone who was attempting to help me - but the long-term effect was nil. I learnt to deal with life through trial and error - watching how other people behaved and then copying them. In time my behaviour became second-nature to me but I never really understood why. Still, according to the Consultant Psychiatrist who diagnosed me I've "managed marvellously" to live a relatively normal life.

Now that more people are reading about AS - and realizing that they come into this category - the NHS is in danger of being overwhelmed and they just don't have the resources to cope. My GP was frank about it. Those who have managed to cope with life reasonably well will be at the back of the queue for diagnosis and treatment and all the money/resources available will be used to help younger people. I can see why, but it's hard on the rest of us.

I was lucky, my GP made a great effort on my behalf after I assured her that I didn't want treatment - just the relief of knowing why I am the way I am.

Have you tried calling the NAS?

They may be able to point you in the right direction.

http://www.autism.org.uk/Our-services/Advice-and-support/Autism-Helpline.aspx

Hey all, thanks for your thoughts. I'm hopefully going to stop whining for a bit now - apologies about that, it's not helpful and brings everyone down. I realise now my mood had taken a bit of a dive because of the no smoking - I'd forgotten what a major impact that can have.

Yeah, I've spoken a bit with the NAS. They don't have any listings for any adult services in the county. The one thing I got from them was the name of a counsellor who has autism experience and takes NHS referrals. I'm seeing if I can get that referral.

I did turn up a supposed "Oxford Aspies" group and mailed them but never got a reply. In fact, I have still not yet (knowingly) met another Aspie in real life.

I suppose having an "official" dx doesn't matter too much anymore. I was just curious about my official status, in case it's ever needed for anything, like maybe getting a provisional driving licence. I'm confident in my self-dx, except on the odd occasion where I get full of woe, and decide that I'm not even interesting enough to have a real condition!

I've been asking around at local GP surgeries, but there's nobody with any particular interest in AS - they tell me that their doctors know about the condition, but I guess there's no way to tell in advance if they really "get it". So, trial and error time...

ttfn,
wb.