What can be done to stop this?

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I live in the UK and I am in my early 20s. It took over 7 years to get a diagnosis of AS (despite the fact it was obvious) and even when I did get a diagnosis 2 years ago, I was given no help. The reason I am writing this is because of what happened to me.

For years I was 'cared for' by the mental health services. Learning disability services would have nothing to do with me on account that my IQ is 103, however I do have severe dyspraxia which does come under LD. I was told repeatidly that there was 'nothing they could do' by the mental health and forced deeper and deeper into severe depression. Three weeks ago, it came to a head when my mother couldn't cope with my behaviour anymore and I took a bunch of pills and tried to kill myself. I ended up in a psychiatric hospital (not under section, under the new mental capacity act) because my Mum refused to have me home. Suddenly the mental health team get all hyped up and realise that THERE IS SOMETHING SERIOUSLY WRONG. Finally, after two weeks in the NHS hell hole, I was released and I am now living in specialist accomidation for autistic people.

My point is that WHY weren't me nor my parents told of this accomidation BEFORE it got to the point that I was trying to kill myself (and I am sure many Aspies HAVE died from these problems). WHY did the mental health department REFUSE to help me when I was depressed? WHY does it have to get to a major crisis point before they will do anything?

I am interested to hear other people's stories that may be similar (or maybe you haven't got to the suicidal part yet but are feeling pretty close). I know this is a countrywide problem, yet I don't know how to go about campaigning for change. It is awful in this day and age that the only way to get help is to try to top yourself and for your parents to literally abandon you in an A+E department. If anyone knows how we can make a change, please tell me.

Is that Wyboston in Beds? You should join the local Autism Organisation, and start lobbying the local council and health service.

Jellybean, what we really need are whistleblowers from within the system but that seems a bit too much to hope for. Anyway, check out the Autscape conference, which has the theme of "Effective Living" this year. It's in West Wickham, Kent, from Tues 18th to Fri 21st August. I've booked in myself though I'll be leaving it on the Thursday

http://www.autscape.org/

Yeah, that's where I am now, but all the problems happened in Milton Keynes. There aren't any sort of autism organisations there. I still want to do something though (I would seriously like to sue someone....)

As for the conference, thanks for telling me about that. I'll have to talk to my care managers see if they can afford that because I haven't got much money... especially not that much!

I'm poor...

If you're with Brookdale, then I'm sure they'll do EVERYTHING to help you get to Autscape - if you want more ideas about getting them to help you with funding this please PM me.

As for MK, I'd forget it for the time being and work with the local organisation - any positive input from us, will spread like ripples through the local counties.

There's a meeting in July about the new NAS branches in your area - and it'd be a good opportunity to get involved.

I'm over in East Anglia (my Dad's a serviceman), and we have a couple of autism orgs here, but I'm lucky 'cause I still get Military Healthcare - even thought I was born here - and they can't do enough to help.

Last edited by AmericanPie on 20 Jun 2009, 12:50 pm, edited 1 time in total.

Sounds to me typical of our mental health services they don't seem to be able to do anything unless the situation has completely broken down.

It is increasingly being acknowledged that there is a crisis with regard to autism service provision and knowledge across all areas of society and that little is changing. However, currently there is an Autism bill passing through parliament that, once it passes through the final stages, will make it illegal for the NHS and local councils to not provide autism services.

If you wish to sue someone, then seek legal advice. There are specialist lawyers for cases such as yours. Your local NHS Primary Care Trust has been negligent. You could also write to them through their official complaints procedure (which is what I've been doing).

You can access information about legal action or complaints against the NHS here at the Citizen's Advice Bureau website.

EDIT: Autscape is utterly inaccessible to most, as these things usually are. But I hope you can get some help to attend.

I really would think very carefully before embarking on what would be a battle that would last for several years and rake up all of your past.

Believe me I know what it's like to want to hold people to account, but I also know the high cost of achieving this. Perhaps the time and energy would be better spent on campaigning to make sure no-one else has to go through the same thing.

You should talk to Em Thompson. She's been through the mill to. You need to know what you're letting yourself in for.


My advice, take it on the chin, look forward and get on with your life.

Jellybean,
its good are still alive and are finally being helped-and are able to speak out about this as may be one of those who helps to getting something done about the mess that is social services,it is a very common experience amongst people [with all types of disability] trying to be accepted onto the services,or trying to get the correct sort of help through social services.

What about writing a blog on the experiences have had with SS so far and pass on the link to the service managers,staff etc?
the blog am write is about living with autism and the experiences have had with living in LD services residential care,and all the service managers read it,as well as own LD nurse-the highest managers actually encouraged doing it when they first were given the link by staff,it is worth a go.

they have council based advocacy services for people in SS LD services residential care ,am recommend looking up local advocacy services for people in care-as this can get a lot of things done,including being very powerful with complaints.

am also recommend not fighting to get into learning disability services if its for home support or residential care, their residential care is torture,unadapted for Autists,rarely have homes in suitable places for autists and many staff do not have enough training on ASDs [if any for some].
The reason will be refused care under learning disability services is because what they mean by LD is LDs that affect global functioning including personal care-LD services usually only accept people whom are low functioning [ie,have what SS call critical care needs] and IQ is usually part of it as well,all of this is because of funding.
Am used to know some DS adults [ds=downs syndrome] whom were under LD services all of their adult lives for social workers-but because they were quite HF,they were turned away from the service and lost their social workers.
Am think it was last year or before that when criteria in all of social services got stricter,most boroughs following it.

The only decent services under LDS is their LD nurses,speech therapists,occupational therapists,pyschs and autism specialists.
The only Autists they get away with looking after without wanting to drag them off to a specialist service are prof/autistic whom are very limited in communication because these are the guys that cant show their needs in the usual ways,and any behavior to attempt to do so gets written down as challenging behavior.
They day centres are extremely crap,there's so little funding put into them,they're old halls with some classes on doing stuff for the most disabled,and the rest get plonked in front of a tv and video set till the end of the day,and those who have challenging behavior get taken out of the centres on one to one instead.

Am recommend trying to access ASD specialist services instead,the difference in them is huge,the NAS is the obvious one to try for but would need to be in the area they are in,and it does take funding for a lot of their services,and am not sure how would get that if do not have an actual social worker.

Am think the reason why were not told about the ASD specialists before,could have been down to them not knowing the ASD service existed,if it's small and local only its more likely theyre not going to know it exists-they also look for quotes when they are looking for support services and pick the cheapest so that service may not automatically be looked at,another reason could be the borough are in may only want to pay for specialist care in their criteria of the most severe or critical cases.

Am can relate to some of what have experienced-am currently having to live at parents home as SS/LD services showed their understanding of severe autism and decorated the entire residential home am was last in with new colours,and then whilst was still at mums/dads,they let one of the residents buy a pet bird meaning could never slowly reintroduce self to the place.
mum/dad cant cope with am,though do have the support staff here,and mum is very difficult to live with because she is alcoholic,NAS managers have to force SS to stop messing about so am able to move to new residential as quickly as possible.

Get local MP involved if that would help.

Sorry to hear that things are not going well for either Jellybean or Kingdom of Rats. I hope that things get better for both of you.

I think that the UK system is stacked against anyone with a mental health problem, as long as you are good and do not pose a threat to the public you are in danger of slipping through the cracks if you get very ill. I think that the problem with conditions like depression and some ASDs is that they rob a person of the skills that they need to hold their lives together so that they can get treatment and help.

Not a nice prospect.

What bugs me is that if we made a modest investment in people with ASDs then many of them would be able to live productive lives and end up being taxpayers rather than being on welfare handouts. I say a stitch in time saves nine.

If we spend money on a person with AS for 14 years and then the person gets a BSc, PhD and a well paid job then the tax they will pay may well cover the cost. While if we fail to spend the money and the person ends up on the dole, then the cost to society will be higher.

I think that care in the community was a great idea but it was grossly under funded.

PS. I would like to know what price the UK government would have put on the work of Alan Turing ?