After 10 years of depression and talking therapies (and comments from friends and family), I'm beginning to think I've got Aspergers.
Is it worth going through the diagnosis process? What does a diagnosis lead to?
Think I can be referred by my GP to Maudsley Hospital in south London, but it will take months.
Would be grateful for experiences of others.
Hi Technophobe23,
It's ok to mention Cambridge, we just wouldn't advise naming specific services in Cambridge such as the name of a hospital/doctor etc. As you haven't had a particularly good experience with this hospital, I've removed the location in line with the Community rules. Hope this helps, it's in no way a criticism of you 
7. Identifying individuals or specific services, especially when making complaints, may be considered libel and your post may be edited or removed to prevent this.
Thanks,
Sofie Mod
NAS18906 said:Have you come across IntenseWorlds excellent post on getting a diagnosis?
http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/guidance-adults-assessment-diagnosis-through-nhs
There is some information there about getting a second opinion.
Also, see the NHS Choices page on the subject http://www.nhs.uk/chq/Pages/910.aspx
Thanks Recom, I have looked at this and it is an excellent post. It answers a lot of questions, but unfortunately, not mine.
It seems rather unfair that some people have to jump through a lot more hoops than others, simply because of where they live.
Sofie Mod said:Hi Technophobe23,
Happy New Year! I've just edited your post as we try to avoid naming specific services in posts.
Thanks,
Sofie Mod
That's OK. But it's OK to mention Cambridge?
Have you come across IntenseWorlds excellent post on getting a diagnosis?
There is some information there about getting a second opinion.
Also, see the NHS Choices page on the subject http://www.nhs.uk/chq/Pages/910.aspx
I'm surprised at how much variation there seems to be between health authority areas. In my area [removed by Mod], it took 2 years and 2 months between initial assessment and first meeting with a psychologist. Shge told me she can't give a diagnosis without 'evidence' of how I was as a child. Which means her speaking to my Mum.
But others report that they didn;t come up against such a barrier and were given questionnaires. Why isn't the procedure standardised? And if I get fed up with the [removed by Mod] way of doing things, do I have any right to get assessed in Cambridge?
Having started this thread, I thought I'd keep you posted on the referral procedure here [removed by Mod].
Having seen someone at the local mental health "Hub" who could refer me to the specialist clinic at the [removed by Mod] Hospital back in November, I thought I'd ring up both the hub and the clinic to find out the timescales. Lucky I did, as my referral had never arrived at the [removed by Mod].
So back to the hub to ask for my referral to be sent again, this time by email. I also asked to be cc'd in on the referral email, so I saw exactly what they said (interesting!) and saw the [removed by Mod] response. So at least I know it's arrived this time.
News from the [removed by Mod] is that referrrals from my borough [removed by Mod] no longer need to go through a separate funding request. So my referral is apparently being reviewed early in January and I may be seen within the month.
The moral of this episode? Don't rely on NHS referral systems to actually work. Be prepared to chase your referral to make sure things are happening.
Yes it is.
I think that the idea that at any particular age we are getting 'too late' for it to be relevant, is utter nonsense. I absolutely would support an adult of any age seeking a formal diagnosis.
I think that it will always play on your mind once the question has come to your attention. One of the attributes of the Autistic mind is tenacious truth-seeking - a quest to find answers for oneself.
If you are having trouble with waiting times a private diagnosis is well worth the money; then you can start being kinder to yourself sooner.
It is worth it. You do matter. You are never at an age where you become less worthwhile a person. Be brave, and go after a new beginning of validation for yourself.
In that case, I am doubly glad that you've persevered. It's sad to hear, yet again, about yet another uninformed and unhelpful GP. And that rubish about private assessment really gets my goat, as quite often a private diagnosis isn't taken anywhere near as seriously as an NHS one, although the rationale behind that escapes me. It certainly shouldn't be necessary, let alone suggested...
I'll keep my fingers crossed that you get some satisfaction after all this. We are easily dissuaded by such experiences, and they become part of our overall experience of being ignored and mistreated, but every success is a step towards better diagnosis and you certainly have valid things to say after your experience.
The greatest hurdle seems to be simply getting someone to take you seriously in the first place - even a part or alternative diagnosis means that at least someone has finally sat and listened to you, which is, after all, the point!
Good on you
Thx Classic Codger.
I'd originally thought I'd be referred directly by the GP but, in a way, I'm glad I wasn't. They were totally uninformed about the assessment services available for adults - they originally told me it was only available privately and didn't bother ringing the [removed by Mod] clinic to check even after I gave them the number.
If I'd gone via the GP, I think my referral may have been turned down as it had to go via the funding "Panel" (as we are in a different borough to the [removed by Mod] Hospital). Stupidly complicated.
My GP suggested the referral via Mental Health (MH), as they could give a professional assessment for the referral. However, my GP then failed to include *any* information about me in their referral, including the letter where I explained by MH history and my reasons for wanting to be assessed.
At least I had a chance to go through this when they rang me.
Hi richardsw16. That's very good news for you, and I'm really glad to hear that you've got over the first hurdle. I know that this 'waiting' part can be terrible - if you're the sort that just wants to get on with it...
If you feel the anxiety rising, that would be expected, I think, for most people. It is, after all, a significant step on the way. I hope you get the referal for proper assessement, it seems a bit harsh to give you a pre-screen but AS specialists are busy people it seems. I had to wait the best part of a year for mine, but times vary hugely across the country. I think that your pre-screen is happening very quickly, which is great!
Good luck with it all, we're always here if you have any questions about it
Well, I've had a phone call and now an appointment booked at the Living Well Network Hub (Lambeth's new mental health services "brand") in two weeks time for a preliminary assessment. If I get through this, I get referred on to the Maudsley Hospital clinic. One step at a time ...
Classic - I agree with everything you have said.
I was diagnosed in my late 50's. My diagnosis gave me an explanation for the previous difficult 50 years, and enabled me to see where I needed to focus for improving my life.
The mis-information and obstacles presented by GP's, as frequently related by Community members on this site, is discouraging. One can only hope that this culture changes eventually, though I fear it may take a very long time.
I would re-iterate that it is never too late... everyone who has had a difficult life because of Asperger's Syndrome deserves an explanation through diagnosis.
I'm with Tom here, it's clear we've had the same experiences and now have the same response.
Diagnosis can only improve by experience, so the more AS people who get a formal diagnosis, the better the diagnostic tools get, and the more we can speak up for ourselves and those to come. If we don't, we condemn our children to suffer the very ignorance and ostracisation that we have all known.
I encourage anyone asking the question, to go ahead and seek a formal diagnosis, and I don't believe that it's ever too late for some answers...
I'm 66 now and my life as been an absolute nightmare. I was caned at school for austistic behaviour, bullied, and because I didn't have comunication skills was an easy target for anyone who wanted to put me down when an adult. I keep away from people altogether now as I see most of them as just a pile of scum. Sorry, but that's the way I feel about most people because that's the way they made me feel about them.
Thanks for the comments.
I've started the referral process, but I'm already bumping into uninformed GPs and complicated referral systems.
My GP first told me that they had no experience of these referrals and thought it was only available privately, when in fact the local assessment centre at the Maudsley Hospital in London is a national centre which takes NHS referrals. The GP hadn't bothered to contact the Maudsley, even through I'd passed on the details of the clinic. Two more phone calls later with the GP, and now she is saying it is quicker to be referred for AS assessment via a Secondary service (eg Community Mental Health) rather than direct from them. I'm just glad that my AS symptoms give me a terrier-like determination to get to the correct information!
This is pretty much my own view. I'm 50, and have my preliminary assessment next week. It's about knowing I can look for support if I need it (after a near-breakdown due to work stress 3 years ago); being better aware of how to play to my strengths than my weaknesses. What's amused me is getting a questionnaire to send to my dad about my early childhood: they're lucky I'm not an orphan at my age!
Just been diagnosed at 36 and its taken 3 years. If you have got this far through life you have to be high functioning to some level. Its hard to get an adult diagnosis, they mainly do it by talking to your parents about how you were when you were young. They have to be certain its not MH issues causing you to want to be unsociable etc.
I went for a diagniosis for a specific reason. I'm due to go back into hospital for some neuro rehab and have had a really tough time in there before due to things being changed etc so it will help the staff understand my needs a little more but it does nothing for on going support or benifits. If you arent already getting benifits and think you should be then things like personal independance payments are done on your ability to be able to do things and not what your condition is called so a diagnosis will make no difference. I got my befits on MH grounds.
A diagnosis has been good for me only in my head to allow me to stress less in busy environments etc and allow myself to be less tough on myself if i find i am not coping with a situation
