Hello, I'm looking for help

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I'm 52 and male, live singly in the Midlands of England, UK.
I have a mixed autie-aspie style of autism and many other conditions.
I have developed a tremor and haven't worked for several months.
Doctors have developed a communication difficulty with me.
I have no self-advocacy ability.
I am in economic difficulty.
It is too much work trying to run my affairs single handedly, I need participation.
I need to know a lot about being ill with autism and being a single older person with autism.
I also need to hear from people in the UK about being autistic and accessing the NHS.
Thank you,

Hello!

My experience with the nhs is terrible. First they referred me to the wrong department, then I complained, then they wrote a reply saying they were sorry, but still didn't refer me to the right department. So I wrote to them again and they ignored me. So now I'm completely stuck and I think they only way I can go forward is to ask my parents to support me to go private. But I think this is terrible because not everyone can afford this.

Welcome, Philipwood!

I'm YowlingCat. You might try posting in either of the the Dino-Aspie threads. They are for older people on the spectrum. We have many folks from the UK here, and I'm sure they'll be glad to give some advice.

Come on over, have a seat in the Cafe or the Annex (just opened) and have coffee and a muffin! You're among friends, here.

Hi PhilipWood,

Although I am 26, I have (and continue to have) very similar problems to you - and don't even get me started on the NHS!

The things that helped me, and may possibly be of help to you, are as follows:

Advocacy - try contacting your local MIND - they offer advocacy and were very helpful to me. Also do a search on the internet for AS / Autism groups in your area as these too may offer advocacy, or at the very least an opportunity to meet people in comparable situations.

Also try contacting the National Autistic Society - they can give general advice regarding getting help through the NHS and can also advise on AS/Autism groups and also possible advocacy in you area.

Regarding getting help from the NHS, you need to be really persistent. Keep speaking to you doctor, phone the local psychiatric hospital (in my area, if you phone the psych hospital and say you are struggling to cope, they can contact your doctor and demand a referral) and also ask about AS diagnosis. Where possible, try to get people's names so that your doctor can refer you to a specific person rather than just a general referral to a hospital department where you could just see anyone and not necessarily get any help.

Here is some advice I recently gave to someone in the UK in a similar situation regarding diagnosis:

"Regarding diagnosis - sorry for the long reply - but I want to give you a thorough answer.

I was initially diagnosed via MIND (as I had been seeing counsellors and not found this very helpful, so went to MIND seeking further advice).

In order to actually get an NHS diagnosis, you first need to see your doctor. Be warned though that in my experience and that of the many aspies with whom I am in contact, many doctors either don't know what Asperger Syndrome or High Functioning Autism is at all, or they have an incredibly outdated idea of what it is - for example, many people still believe that people with even mild autism don't have any feelings or consideration for others - which is untrue and actually quite offensive!

For a general definition of Autism / Asperger Syndrome, try
http://www.mind.org.uk/Information/Book ... scents.htm
or www.nas.org.uk
The latter also contains information as to how one seeks a diagnosis
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1045

So - as I was saying - you need to start by seeing your doctor and outlining all of the reasons why you think you may be on the spectrum - it will help if you can give examples of situations you have been in to illustrate your point.

Also, autism is something you're born with, so try to think back to your childhood to see if there are any incidents or problems you can remember that would point to autism or Asperger Syndrome - some medical professionals like to have a testimony from a parent or older relative / family friend who observed these behaviours in you when you were a young child.

Next, your doctor will need to refer you to someone who can diagnose Autism spectrum disorders. Depending on how understanding your doctor is, you may have to be very insistent about this. (N.B. only certain medical professionals are qualified to diagnose autism, so make sure that you are referred to someone with the appropriate qualifications).Also, if you are quite high functioning, which I'm guessing you are, some doctors will try to put you off diagnosis by asking what the point is of labelling yourself (my response is that 1. Whether or not to label myself is up to ME and no-one else) and that 2. There are certain services (such as help/support at university or support in the workplace, or access to support groups or advocacy services etc) that you simply cannot access unless you are officially diagnosed and 'labelled' - that's just how the system works.)

There are some good websites out there regarding aspergers and high functioning autism, e.g. www.wrongplanet.net, www.aspergia.com, www.nas.org.uk etc.

Word of warning - don't be put off by some of the descriptions of autism on these sites. Autism is a 'spectrum' disorder, so it is possible to have it very severely - to the extent that some people will never be able to communicate or function independently - it is also possible to have it to a very mild extent, or to be 'high functioning' - in fact well known people with / considered to have Asperger Syndrome include Bill Gates and Einstein.

The descriptions on most websites are a generalisation, so don't be alarmed if they sound a little too 'severe' to apply to your experience of the spectrum.

For diagnostic criteria, try http://ani.autistics.org/dsm4-autism.html
or http://web.syr.edu/~rjkopp/data/as_diag_list.html
or http://www.bbbautism.com/asp_gillberg.htm
or http://www.geocities.com/richardg_uk/icd10f84.html

If you can afford to be diagnosed privately, try the Autism Research Centre in Cambridge
http://www.autismresearchcentre.com/clinical/class.asp "


I hope this helps

I can`t add anything more useful than what girl7000 has said but I am also from Midlands UK (Nottm) and have experienced NHS there.

I was treated for depression but had lots of side effects to the drugs and the doctor said that it was reactive depression not clinical anyway. I have a personal theory that brain chemistry in AS is different so drugs may work differently for AS than NT people....
I had a lot of muscle spasms, sometimes violent like a fit, could this be similar to your tremors? Are you taking any prosac derivatives or other anti-depressant?

I broke down in the doctors office one day and she got worried and sent a psychiatrist and psych nurse to my house (I think they thought I might need to be sectioned) but again realised I was basically okay.
I saw some counsellors but apparently this doesn`t work unless you can relate to the counsellor emotionally so generally no good for AS.
The only thing the psychiatrist could think to do was put me on the waiting list for group therapy, I waited 2 years for this, finally joined a group but then had to leave after a few weeks as I caused a big row, people were crying, I still have no idea what I did wrong. One of the other people asked a sarcastic question, I didn`t get it so answered as if it was a real question, everyone laughed, I said I was upset at being laughed at, they got upset because I critisized them - all my fault????

I often think that some practical social training may be benificial but can`t think the NHS has anything to offer in the way of `treatment`or `counselling`.
My psychiatrist helped the most but just by treating me like a valuable human and not like some weird freak, also giving me factual information about depression.

I organise all my finances on-line, bills are paid automatically, until last year I have always been poor and doing a lot of manual agency work (despite BSc Hons & PhD ).

Do you know what it is exactly you want from NHS?

Welcome,

Helpful folks here.

- no autism societies offer advocacy

- the NAS doesn't have any useful information on advocacy whatsoever - we have been round this loop numerous times

- I have numerous bodily conditions and I consider autism a bodily condition and my first round with the NHS hasn't been very useful except I seem to have got a sort of foot in the door with the ear department and I keep meeting gastro enterologists socially who have given me guidance how to get a useful consultation - similar to advice given above

- I shall certainly benefit from the information given above

- Everyone else on site, please keep the replies rolling as I need your info as well

I have had papers about me from expert people on autism but the letters behind their name aren't enough to make it official. I shall tell my story when I have got more energy and time

Best wishes

Are you on any meds now? I have been on some that were supposed to help things but were actually worse then what ever it was they were supposed to fix. My current one is the best, but in trying to find the right dosage, just a differance of 25mg put me into such a depression, I wanted to take my own life. My tremors are gone now, but in the process have had a few that gave me what I called the "jerks" uncontroled hand movement. I do think the tremors were due to stress related meltdown. Just trying to point out, if you're on any, they can be tricky sometimes.

There are better areas here to discuss this. Your questions will meet the attention of others they may be off some help. I must say that you have gotten some good advice already. It's like that here.

Anyway, welcome to WP

I'm 56 and as Yowling Cat has already mentioned mostly over in the Dino area, although I do move around some. Yeah, I don't need a cane, yet.

Another chunk of agreement from me.

I'm surprised that the NAS has not been more helpful. One of the early things I did was to join an Aspergers Social group run by them, which I've found... interesting. AS + social always strikes me as a bit of a contradiction...

Also MIND was helpful.

Another thing that I was lucky with was a nearby charitable organisation that had a resident counsellor. He was extremely helpful over the last year. Unfortunately, he has moved jobs and they haven't got a replacement for him yet. In the meantime, the local mental heath team have got back on my case.

I suppose I've managed to be pushy enough to get all the possible agencies (including the Job Centre) piling in on me. Ho hum. I'm surprised I've done so well. I'd much rather just curl up and sleep.

PS. I'm a 58 year old kid.

A lot to say on this Welcome!

No time to dig up the articles I’ve been reading about “Aging America”. We are facing somewhat of a crisis with our aging population...

My own Advocacy comes from self... Not much else out there... Except the help I get from a bunch of kids, old and young, on WP and AFF (what’s up with AFF anyway, been offline for a couple of days?)

Something in the news lately have been stories about a trend developing with housing demands. Builders are finally offering homes with Extended family in mind; More than one master suite, and second “kitchen”- ette. The era of independent immediate-single-family housing is on the wane... Not nearly soon enough...

Also, Laws are being posed to change the legal ramifications of those wishing to “partner” and live together. There have been a couple of stories about seniors, whom out of necessity, “partner up”.

My Mum lives in an apartment community of seniors. Almost could be considered a commune with individualism allowed... They all tend to one another, like a big extended family would...

And BTW... I’m 51 and not “old”. Just a kid hiding behind the facade of a creaky old vessel... So, put a dot above the L in old, cross-out the O with a quasi k, and there you have me hiding behind OLD...

Welcome Aboard! And good luck...

I’m curious what the trends are in the UK for dealing with an aging population... You all over there seem to be 20-years ahead of us in many other challenges...

Good subjects for the Dino Cafe’ I imagine... And don’t wory about your spelling or punctuation-- ; . Mine’s ; - atrosious...

Regards, Beammeup

Hi. Welcome to WrongPlanet. Hope you like it here.

I'm glad you found the "In-depth forum" which was created less than a week ago.

About your questions:
If I lived in the UK, I would check out Dr. Baron-Cohen's Autism Research Centre at Cambridge.
Here's the url:

http://www.autismresearchcentre.com/arc/default.asp

I imagine if you offered yourself up to them for study, you might get some information about resources etc. as well.

Here's another link on their site:

http://www.autismresearchcentre.com/clinical/class.asp

I'm jealous - there's nothing like that for thousands of miles here.

Welcome to WP!

Tim