Where next if NHS assessment isn't available?

I have to know my limits, when I've been out I get tired and start zoning out which affects concentration.  I guess it's like truckers knowing when to pull in to the truck stop.

Being a passenger is totally different to driving yourself. A very broad statement but I suspect most Aspies are better at driving because they actually concentrate. You also tend to be good at anticipating things because that is what you do all the time your round people. The other thing I would say about driving is it is a real dose of freedom. I have some eye problems which stop me driving at times. So when I'm able to drive it is wonderful. (apologies to the commuters amoung you!). Dunk

Oh good, it doesn't effect me on my scooter so it won't effect me in a car. When I'm a passenger in a car I prefer to sit quiet and count lamp posts, if there's no lamp posts I watch the white lines go under the car and listen to the hum of the road... But when I'm riding I don't do that I can focus completely on the road, so I'm certain I'd be the same driving a car. 

I drive and I have Asperger's.  You only can't drive with it if your GP says it affects you too much to drive.  Other than that, it's fine.

Did you go and see your GP in the end? I've been debating it all trying to work out what's best. I tried to explain some of my concerns to my dad and he just said I am who I am and I don't need to label it. But he doesn't understand the problems it causes and the way I feel about myself and I think I will be able to accept myself much better if I knew the reason and I get problems at work with it too and It's be best to be able to explain to my supervisors when they ask why I'm not talking and in a mood, when I'm not, I just don't have anything to say. Also i think I would stop beating myself up so much when I struggle with social situations. I know i felt better about me struggling with maths when I was finally diagnosed with discalculia, I think I'd feel the same with this.

The main concern I have with a diagnosis (apart from the obvious difficulties with trying to explain my problems to a GP which is the hardest thing to do and they don't listen or understand me or whatever) but what about driving, I'm wanting to get driving lessons, I've always thought I would struggle with gears and things because I'm not good with sequences. So Ive put it off for all these years, but this year I got a scooter and have been all over on it and I'm fine, there's no gears but I'm sure I could learn it if I tried, I'm clever enough and there's some really thick people who drive, so if they can I'm sure I can. But what if DVLA say I can't have a driving licence at all. I live out of the way here and there's hardly any public transport, it's really bad!

I tend to swing between two views wanting to pin down the root issue and then then "stuff em, I'm happy being me". I have a few issues at work so i'm keen to have something in writing to go into my employers records. I also tend to analyse everything so can never quite settle if I don't understand it properly.

I suspect if you can live with it as it is you would save yourself a wholeload of agro, disappointment and stress by leaving the assessment alone.

Good hearing from you. Just knowing there are other folks around with similar experiences is very comfoting.

Edited, reply was to OP which I had previously replied to, confusion because of new post on thread.

I know exactly what you mean about self diagnosing, it doesn't mean anything really. I did this test also and scored 8 possibly 9 (as dunk-in said, I try to answer honestly and almost a little lower than necessary, but then there are some ambiguous questions too). I also did a similar but different test I found on the embarrassing bodies website and scored 33 I think if I'm remembering right and over 32 suggests autistic spectrum. 

I. Ant stand doctor. And I avoid my GP So it is a difficult one with going to the doctors about it. I think for me it would be good to know why I am the way I am, but I don't think I can face the fight to find it out and I know it would be a fight for it. Its affected my work and relationships so just to understand it would be a releif but then it can't change anything. I'll still be the same person.

Fraid so, apparently you are supposed to be able to work out people's intentions.

Not that I'm entirely sure that NTs do. It is just that part of social learning is anticipating intention, and because people affected with autism don't engage sufficiently in social exchange, they get less chance to learn about this anticipation.

I'm a bit more sceptical as to whether you can say that of reading about characters in a book, as the author usually writes some of that into characterisation. But yes the questionnaire does have its anachronisms.

One of the dangers is that doing the questions a number of times you begin to see where it is trying to go. You may therefore start to improve your score.

That's how it is, isn't it...masking what's going on inside, but it feels like moving a mountain to get there, sitting there in utter stress and then needing ages to recover afterwards.

I filled out the test last night after reading the posts you provided. I really try to be honest when I fill these forms in. You know what you should say if you want a high score but I deliberately try to score low so I don't squew the test. Scored 9.

What is far more telling to me is that I just didn't know how to answer some of the questions. Q7 for example. How do I know if I have trouble working out peoples intentions in a book. I listen to a lot of audio books and really enjoy them but do other people possess a greater insight than me...who knows!

The idea of understanding what's going through someone elses mind or how they feel seems just ludicrous to me. It's difficult enough to work out what I feel most of the time. But thats all I've ever known so it's confusing but "normal" to me.

I'm starting to see a route forward now. I think the next step is to get some of these thoughts and questions down in "Doctor speak" so that when I go back to the doc again I have a better understanding of where he is coming from. It seems a funny system that the patient has to do mental gymnastics to ensure the doctor will in fact listen to what you have to say.

I suspect that's half the problem though, because I will turn up organised, calm, focused and seamingly perfectly stable and then expect them to believe me that I have serieous issues that are affecting both home, work and everything else I touch. Shame they don't see the state I'm in after I've fled from the doctors 30 minutes later.

Thanks for everyones support. really appreciate it. Dunk

My GP is clueless about autism as a whole, he doesn't read anything and makes mistakes, but he did put my private diagnosis on my medical records after writing off to the clinician.  He still has no idea what reasonable adjustments are though, or his obligation to provide them.  The practice manager is awful, he is outright discriminatory against autism through extreme ignorance.

I was diagnosed with Asperger's syndrome about 8 years ago. My GP initially referred me to a psychologist, and I was later shown his letter, in which he said he was doing so on the grounds that Asperger's only affected children, and therefore I must be delusional.

The problem of GP ignorance is widespread, not helped by the fact that medical journals keep coming up with spurious studies claiming that, for a tiny study group and pitiful methodology, they have found evidence of children being cured as they reach adulthood. A common assumption is that if eye contact difficulty no longer seems obvious, that's the autism cured. Or else there are numerous quacks out there promising all kinds of cures that aren't corroborated. The trouble with autism is that anyone can set themselves up as an expert.

There are very high standards across most medical research. Why autism should be any different is beyond comprehension. The Adult Autism Strategy, including the creation of autism partnership boards, is supposed to resolve the ignorance. However the main research centres make a lot of their income from selling autism services, something which wouldn't be tolerated in almost all other medical research.

So you will find many people on here have had bad experiences with GPs.

If you look at the stickied thread I referred to, there is a link to a GP screening tool called the AQ10.  If you score above 6 that's a good indication that a referral is clinically indicated.

Thanks for the links. I've had a good read through the aims of the group. I'll contact the council and see if they will tell me if the program is still running and then slip in the question of whether this has resulted in a route to recieve help or if it was all just words. I'll be nice....er well perhaps cunning.

Whilst reading through the policies on GP referals I suspect that they have to find evidence that a referal to a specialist is necessary. One of his questions to me at the time was whether how I was feeling could be a different guise of the depression or anxiety which is perhaps why he suggested sending me down that route first. I couldn't find the words to answer that at the time. It's simple really though depression is in your head, its a brain thing but aspergers is in your heart, its sort of who you are. Perhaps next time I will write it down in a letter and send that ahead of the appointment and then go through it while there. 

Thanks again. Dunk

Thanks very much for you post. I found the links that you put together very helpful and gives me something to work on. Mostly though, thanks for the glimmer of hope. I think the most damaging part of aspergers (though this makes it sound like a disease) is feeling alienated from most people. Compare that with the sence of "family" that you get when chatting to folks on the forum. That's quite special.

So many GPs these days are a waste of space.

Cumbria claims to have set up an Autism Partnership Board - that is an autism specific service rather than the usual meek add on the Learning Difficulties or Mental Health. You have to take such claims "with a pinch of salt" (ie cautiously), as this one met regularly for three years but last meeting was january 2013, but here goes: www.cumbria.gov.uk/.../default.asp (hand entered - cannot guarantee but search autism in cumbria if not.

Of its four main areas the third is "Identification and diagnosis of autism in adults, leading to assessment of needs"

Your waste of space GP will have been told about this, so I anticipate his reluctance is about saving partnership costs (and stuff all that hypocratic oath nonsense).

Contact the Partnershp Board at autism@cumbria.gov.uk Phone 01539 713329 (Whinfell Office, Longpool, Kendal LA9 6ER) if they're still going.

Investigate this service first, if it is still ongoing. They may be able to advise you how best to engage your waste of space GP in the process.

Legally your GP cannot refuse to refer you and legally the NHS has to assess you.

See my thread which is stickied about assessment and diagnosis for adults.

You can search for a private practitioner if you don't want to wait and can afford it.

I don't think you ever find peace and self-validation until you have a confirmed diagnosis.  I knew I had it 6 years ago, but having a diagnosis (which I got this January) made all the difference, until I got it, I felt that I could be lying to myself in some way.