Anyone had an NHS Autism assessment before?

Former Member

So I am being offered a assessment in the NHS at a hospital in London called The Maudsley hospital. I don't really know when I will be seen or if I will get any treatment from them but what I wanted to know was if anyone here has had an autism assessment in the NHS and if you have recieved any support for things?. I havent had a FACS assessment from social services because i dont meet the highest level of needs. Is it possible to be completely isolated with Aspergers Syndrome? I haven't stepped out of my house in a while. Now I'm worried about being depressed and not facing people

I am having extremely bad panic attacks and anxiety is making me paranoid. I don't know who to turn to because apparently my clinic picture is not eligible for help in the mh services. This is my last option for any help. I don't want to sound like a trouble maker. I feel really isolated at the moment and spend any time I get on my own distancing myself from loads of people and ignoring them because I can't deal with pretending to be happy infront of people who don't understand my mental health. Do I even have mh issues? Other people say it and it sounds I don't have anything wrong with me psychologically they say they've agreed not to give me any support because treatment three years ago didn't work. I am going to be changing my GP soon because she is less supportive and never understands me. It's a waste of time seeing her. I feel really low and feel afraid of the future. I also haven't been eating very well. I've been wanting to throw up after binging on junk food I know I shouldn't be eating in the first place.

Former Member

Hi Sonia1 :wave:

I don't have any experience of the assessment or know your full situation in terms of what services you have been involved with previously. Just make sure you are totally up front about everything that's going on for you as you have here and definitely change your gp of you're not happy with the service they're giving you.

Have you spoken to anyone about the anxiety/panic attacks?

Dp

Former Member

I've had experience of Autism testing on the NHS. It was awful. I was discharged and was left with no support. Only found out that I'd been discharged after talking to my GP.

I knew I had it (as do other people) but it was just needing (for support and other stuff) a diagnosis in writing.

Former Member

Thanks Dollypop- I'm having a look at new GPs to see which one might take me. Someone who is understanding doctor might listen to me then. Not at the moment no- I'm on medication it's an antidepressant they are supposed to be monitoring it but I can't bring myself to go and see the GP because the way she talks to me is awful. I do need to speak to someone about it but don't know who
X

Former Member

Hi Melian.
We're you seen at the mh services? Do you still get any support? I don't have a single thing in place at the moment so I'm struggling to cope on my own knowing I have Aspergers having it tested privately is one thing but now having it verified by the NHS. Did they not give you any support? and who discharged you? Did u complain?.

Sonia

Former Member

Yeah, I was seen by CMHT. (Community mental health team) I receive no support from them at all. When I complained about this, (as well as them losing my notes and then telling me I'm not entitled to a report) they argued that they've signposted me to support. They told me to go to social services and contact National Autistic Society (NAS) to find out about the support groups. I've done both and was told by the lady who runs the group, that they're not a substitute for counselling, mental health services, etc. The idea of the group is peer-to-peer support and advice.

My complaint ended with PALS writing a letter and telling me that CMHT have done nothing wrong.

Apparently now, they only diagnose you with Autism / ASD and not high functioning Autism (HFA) or Aspergers.

Former Member

I'm really sorry to hear about the terrible service you've experienced, Melian. Sonia, I hope this doesn't put you off too much - try to remember that services can vary a lot according to the area/funding etc.

I've found a couple of links for you with info about how autism is diagnosed - hopefully it will help you to prepare a little:

Autism and Aspergers diagnosis NHS

Autism - getting a diagnosis

I'm so sorry to hear about how your anxiety is stopping you from going out. Are you getting much support from your friends and family? Maybe you could try and make a plan with them, taking really baby steps and work up to going out with someone?

*hug*

Former Member

autistic spectrum disorders are not mental illnesses so a mental health team don't have to provide long-term support after a diagnosis. most won't have the capacity to offer anything because as you probably know, autism can't be 'treated' or cured. typically the kind of help people need is more practical, with life skills, social abilities and making friends, finding work, etc. those are the kinds of things that charities such as the NAS used to offer very widely, but their services have been reduced due to funding cuts (that's not to say that they don't offer anything, they actually have a wide profile of groups and services that you can find out about on their website). unfortunately the experience Melian describes with mental health services is pretty typical. the exception to this should be when the individual is on the autistic spectrum but also has a mental health condition, such as depression or anxiety. in these cases they should be able to access mental health services irrespective of their autism, because they have a separate mental health need, although this is likely to be entangled and worsened by the ASD (eg, obsessive-compulsive behaviour developing from an obsessive interest). however like everyone else, access to mental health services is very difficult and as funding is reduced and need increases, the more severe the condition has to be before services can intervene.

with regards to the assessment, a common tool used with adults is the DISCO which is basically an extended interview with questions about your development. you might be asked to take a parent or someone who knew you as a young child so that they can provide more information. there are other assessment methods too but some are specifically used with children rather than adults. again as Melian has mentioned, the main aim of a diagnosis of autism in adulthood is to access other support, such as social services, for which a firm diagnosis is needed. Melian is also right in saying that as of 2013, technically Asperger's Syndrome is no longer a recognised condition (under the American Psychiatric Association's guidelines - it still exists in other reference texts). that doesn't mean that the difficulties experienced by those with AS are not very real, but that the name used to label the condition has changed. previously the main diagnoses were Autistic Disorder and Asperger's Syndrome. now there is a single name, Autistic Spectrum Disorder, and within this category you might be described as 'high functioning' or 'low functioning' depending on the degree of difficulty you experience. although this has been a really controversial issue, the reasoning behind it is that people like you who are falling through the net with support services should become entitled to the same services as those with more 'traditional' autism. so if your NHS assessment leads to a diagnosis of autistic spectrum disorder then you may have more success in future applications.

sorry that this has got so long, but there are quite a lot of points in your post that i wanted to respond to. my advice would be to make sure that when you attend your assessment you make it clear that you have mental health difficulties that cannot be explained by your autism. you need to make sure that the doctor realises that you are struggling to go out and that you are feeling low and anxious, because although it is likely that some of the issues are related to autism, they are having a negative impact on your ability to cope on a daily basis and therefore you need further health care. being autistic should not automatically exclude you from mental health services but unfortunately these days everyone has to fight really hard to be heard.

Former Member

You should be asked about any mental health problems you have. At the time, I had none and forgot to disclose everything that happened from the age of 13-21.

Former Member

Thank you so much omg hi. I really value your reply. I agree with all most everything you've said. At the moment I'm having real trouble with isolation and also the anxiety is getting worse. I feel somewhat trapped. I also have been having short visual dreams where things are going good and then I wake up to find life is even more difficult because nothing is solved it's very complicated. I've heard about those changes to diagnosis and I don't really know how that would affect me etc. I don't really understand the value of the report because it can only help so much and that's limiting ways of treatment in any case because they usually don't have treatment for autism spectrum disorders.just thinking how things will pan out now.

Former Member

Thanks for the links spanner. Family is kind of useless, they don't see past my problems instead think I will suddenly snap out of it. It's difficult when things don't go right and I always get the blame mostly. I have been exploring private therapy options but it is VERY costly and I am on benefits which is not enough to cover therapy sessions. I find it difficult to explain anything to anyone at the moment because its getting to the point that people have given up on me. There are several things which are all going on at once and the more I try to stop them from piling up the worse they get and I get wound up again and again. I'm guessing I need to walk out and do things it's hard because I've let it carry on so long. I'm trying my best to use techniques which can help me reduce stressful situations at home. Hmm. Not working though. Sorry for moaning. Is it common to feel feelings of worthlessness, de-motivated, low confidence and a general feeling of giving up. I'm not going to try and give up that easily either I know I'm better than that it's just a little hard to worry about these things constantly. Thank you for replying

Former Member

Thanks Melian. I hope things are working out for you. It's really hard to actually sit down with someone and
explain and for them to listen and actually believe something is going on rather than ignore it and sign post to non existent help which is not available. I get why mh services can't see people with Autism but they have to help somewhere because if you don't meet help from social services called FACs assessment then have a history of mental health issues then you can't be dismissed into having nothing wrong with you. That's the bit I find hard. What with all the cuts. I know in my area
They are cutting funds and where before you could see a psychiatrist for medicine reviews now to cant unless its short interventions and go back to your GP and ask for help. It's all a spiral of endless trouble for me at the moment. Especially because to start of with in 2009 I came to mh services with symptoms and anxiety, depression etc but once they found out I have autism they are saying that due to them not giving me a diagnosis could easily say they are down to having Asperger's syndrome.

Former Member

When I spoke to my GP, he said he'd just send me back to CMHT. But CMHT can't / won't do anything. It was basically "this is your diagnosis, bye".

One thing I struggle with is explaining what help I need. In my head, I know I need x, y and z. But I can't seem to explain what help I need and why.

Former Member

Do you get any support at the moment at all from any service?

Former Member

Nope. Social services won't touch me because I would refuse to meet strange people in noisy places at short notice.

Former Member

Do you mind me asking: did you meet FACS assessment? Have you persued a complaint?

Former Member

Sorry, what's FACS?

I have made a complaint to social services; but haven't heard anything yet.

Former Member

Hi Melian (and anyone else that might be interested)

I've linked to a great info sheet on what FACS is.

FACS is basically

Fair Access to Care Services (FACS for short) is a
system for deciding how much support people
with social care needs can expect, to help them
cope and keep them fit and well. It applies to
all the local authorities in England. Its aim is to
help social care workers make fair and consistent
decisions about the level of support needed, and
whether your local council should pay for this.

There's loads more info on this pdf too.

http://www.scie.org.uk/publications/guides/guide33/files/facs-leaflet.pdf

Hope that helps clear things up a bit.

Phil :thumb:

Former Member

Sorry yes phil01 has explained it. I was told that every area of the country has social services or a team that assess your needs. Mine were not assessed because I don't meet th requirements for help. Help with dayto day things.was just wondering if you had one of these?

Former Member

Ah, ok. Not had one of them.