Getting a diagnosis

Hi Mark

Unfortunately there is discrimination towards ASD people although things are heading in the right direction..maybe let’s wait see??

if you would like to obtain a private diagnosis I am aware of a very experienced autism specialist and kind psychiatrist who have teamed up to provide much lower cost diagnosis Sara charges a social tariff depending on the individual and interviews you via Skype or in person (your choice although fuel expenses payable) whereby she writes a full diagnostic report and the psychiatrist charges about £250 to provide a diagnostic letter this is both autism and/or Pathological Demand Avoidance diagnosis? 

She is currently booked up to May 2022 and they have diagnosed nearly 150 to date and assisted in obtaining PIP / ESA or now UC with the health related payment - 

Sadly it's one of those 'just do it' things.  Your uncertainty will last for a long time if you go thro the NHS but be very careful about a private provider, because some carry no credibility with the NHS, the state, insurers etc, if you need that.

I had one (telephone) appointment with a GP to discuss it and she was happy to refer, but candidly told me that via the NHS, I would definitely be talking 18 months and maybe 2-3 years. BTW I'd thought through the conversation, had bullet points to hand, and kept absolutely on-topic.

She refused to recommend a private practitioner (quite properly) but offered to 'vet' one that I chose, to be sure it would be someone credible, whose word would be accepted.  She actually said "I would LIKE to check out the service you choose ..."  I thought that was really good.

I was quoted wildly varying prices but bizarrely, in the end, I think the second cheapest was the private practice of the NHS consultant who heads up autism in our region (so if I'd gone the NHS route, I wouldn't have seen him, but someone working for him).   The diagnosis was done with the assistance of a psychiatric nurse with an impressive list of (genuine) credentials. It took a bit of research to find them (these people have no idea how to market themselves or even optimise a website) but I'm glad I did.

Given the Consultant's status I nearly didn't bother checking with the GP, but I did, more to let her know I was going ahead than anything, and the answer was "yes, that's probably the best one in this area".   It took about 8 weeks to get a diagnosis but only because he was on holiday in between my main appointment and receiving the report.

I wasn't offered and wouldn't have wanted a 'feedback meeting' as many people are, and for me (possibly not for others) that would have been a silly annoyance delaying the substantive issue for diary reasons. I just got the draft report, with an invitation to let them know if I contested anything or thought anything was wrong (it was fine apart from some minor, inconsequential details which didn't affect the diagnosis).

I don't need a diagnosis for any state benefits or insurance-related reason, just for me, but I wanted have confidence in it and be sure it was correct.  Having received it, I've quietly spent months reading into autism, including academic books and peer-reviewed papers in credible journals, and it has been life changing.  Enlightening, self-revelatory, and sometimes gob-smacking.

I'm 234 years old (well, nearly) and if I'd been diagnosed as a child it would have been awful, because autism wasn't understood then, so I'm very glad I wasn't.  But if I had known, privately, in my 20s, some major life decisions would have been very different, and life would have been easier in some respects.  Hindsight is wonderful.

But I know now, and I am finding that it is much easier to navigate the neurotypical world. I am still baffled, on an intuitive level, by the same things that used to baffle me, but now at least I can intellectualise it.  I can predict reactions to the things I say more accurately, generate outcomes more easily, and avoid problems more often.  Which is all good.  

My study has told me a great deal about the 'shape' of my own autism (self discovery doesn't begin to describe it).  I don't tell anyone unless there is a specific reason for doing so (only my wife, my brother and a couple of health professionals know).   I'm not ashamed of it, but it's just not relevant to my discussions with anyone else (in my case, that may be different for others).   

So, yes it's expensive.  Yes, it's worth it.  But do be careful about which service you choose (perhaps ask your GP if they'll do what mine did).  

Good luck with it, Mark.   

Thanks, all, really appreciate the feedback. As it happens, I am a student (older than the average undergrad) but I have checked out options there and they just point at GP or private provision.

I think I'm going to speak to my GP but will probably go private.

Mark,

It's as the others are telling you....  you've got the picture. I was in your position and went for a private assessment. The first thing i did was to investigate the many psychologists available in regards price, and guess what? They vary enormously. So take a look around and see what's on offer. I'm not wealthy, but I managed to pay and have never regretted it.  There is no real treatment for ASD, and no cure, but the knowledge that I have it made so much sense and has brought a huge feeling of relief. 

Since then, I have read a number of books on adult autism which I found useful, most of them e-books which are much less expensive than bound editions. 

I was in my mid-sixties when I was assessed, after getting the run-around from the NHS for many years. I wish I could have known earlier. The more I have read, the more I know that my assessment was correct. I now know who I am much more clearly than I have ever done. I understand my difference, 'It' was always there, just unlabelled.

Ben

Sadly, that's it. :-( Unless you are a student. I do know some folk who were diagnosed as undergrads by the uni's in house teams.

If the GP is doing their job, you’ll fill out a 10 question questionnaire, and if you score the right amount, you’ll be referred as long as they are aware how everything is affecting you. There shouldn’t be such a huge waiting list, but yes, unfortunately there is, but it is ‘free’….

I don’t know why people moan about going private. Of course it’s going to cost; it’s not the NHS and it’s not subsidised. In my opinion, you get what you pay for. No waiting, an appointment when you want it, no feeling of being rushed during appointments, or being fobbed off…

I couldn’t afford it, but I had no choice when seeking a diagnosis for my daughter, since the NHS failed her (probably due to lack of funding). It is the best money I have spent. I am awaiting my own diagnosis, after also paying for a private assessment.

Either way, once you find out for sure, you’ll be able to start figuring yourself out and understanding yourself better.

Nope, pretty much bang on. Well some GPs are better than that but it can be a bit of the lottery and there is the potential of a new centre opening up so you get on a new list, but the latter is something I've only heard of happening once, and the former is less common than it should be. 

If you can afford it, consider going private. If you decide to go via NHS go armed with as much information about yourself, your reasons for seeking diagnosis, and your history as possible and be prepared for the wait. I think the average is 2 years at the moment, but it varies a lot from area to area. 

However, diagnosis can be hugely useful for access to accommodations in some settings, and access to some services, as well as just peace of mind. Think about what you want out of a diagnosis, not least because they'll probably ask you about it.

No your analysis is quite accurate, unfortunately.