A Route to Diagnosis - an experience

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This is an attempt to write an account of the diagnosis process for one person in the UK.

Experiences of others in the UK are going to vary, and outisde the UK they will probably vary quite wildly, but hopefully, whatever the outcome, someone else will gain some benefit from my experience.

I live in Fife in Scotland. I'm 38 and have had "mental health issues" since late school age. Diagnosis for depression was followed years later by diagnosis for Borderline Personality Disorder. Attempts to medicate have failed and/or resulted in unpleasant side effects.

I meet the criteria for PBD, but only just, and lack major symptoms, such as impulsivity, that are characteristic of this disorder.

Until about a month ago, I had heard of Asperger syndrome in no more than passing. I vaguely knew of it as something on the autism spectrum. Someone I used to know noted when we were out for a walk and I stopped to look at something of interest only to the geekiest naturalist that at least I didn't have Asperger syndrome. In retrospect, I suspect she was hinting that I do. I thought no more of it.

A few weeks ago ran into a reference online to the word "aspie", obviously a noun, but a word I don't know. Priding myself on my knowledge of English I looked it up, and something struck a chord.

Someone I'm close to then spoke up and suggested she'd suspected for a while that I might have Asperger syndrome.

This led to a lot of reading around, ruling out other possibilities, taking the available tests and so on. I'm suspicious of the tests, especially the online ones, but did manage to lay my hands on some of Baron-Cohen et al's work on the subject. Not being a professional psychologist and applying the test to myself makes the result suspect, but I meet the diagnostic criteria, although I can't be sure I don't meet the criteria for another disorder that I'm not familiar with.

It took someone who has seen this syndrome before to make the connection for me.

Several days of thought followed. Formal diagnosis has advantages and disadvantages. That said, I feel pretty much written off due to the BPD diagnosis, so this would not be an additional loss. On the other hand, access to possible assistance might be a benefit.

This was in the middle of a big existential crisis about who I was and who I thought I'd been. This wasn't pretty, and to anyone now going through that, I sympathise. Good luck. I suspect you have to find your own way through it. I'm still working on it, maybe as a result of my tendency to over analyse.

I was aware that my GP would possibly not take kindly to being debated with in his own surgery. This usually doesn't go down too well. I made an appointment.

I then wrote him a letter, outlining the symptoms that I had either not been aware of, or not been aware that they might be symptoms, in effect also absolving him and anyone else of blame for not having spotted it. I gave examples, some going back to childhood, and indicated that some of the same symptoms had been observed in my father. This letter ran to 2 1/2 sides of A4 at 11 point type. It was delivered about a week before the appointment to give a busy GP time to read it.

The appointment was a cause for worry. As it turned out my GP's first words were to the effect that my suspicions would explain a great deal, and suspects I might be right.

He has now referred me to Psychological Services for proper tests. I suspect these will be based on the Baron-Cohen et al tests. He did tell me that referral was likely to take months, rather than weeks, since Psychological Services are badly overstretched. He mentioned he will enclose my letter with the referral.

I will post again in this thread once I get news, at least of the date of an appointment, but might wait until afterwards.

I will, of course, respond to comments and questions posted here.

Thank you very much for your post. I am currently trying to prepare myself for an appointment with a specialist, assuming I find one and can afford it. I'm sure my experience will be different but I am happy for your success thus far and hopeful for my own. I had been trying to explain to the ONE family doctor (not even pediatrician! not even physchologist!) that I have been allowed to see that I am not suffering from ADD. I just want a competent medical professional to correctly diagnose whatever it is that is "wrong" with me. I was wondering if bringing a detailed file of my personal observations would be appropriate but I've found most doctors find that insulting. I would think it was a blessing personally. Anyway, I've babbled enough. Thank you for your post and I hope all works out for the best.

A suggestion, and something I should have mentioned, is indicating that such a detailed list of observations is too lengthy to go through in a brief appointment. It gives the GP time to think about it. Be sensitive to the emotional needs of your doctor!

The advantage I have here (I'm assuming you're not in a country with social healthcare) is that I don't have to pay for it. That will be harder if you come from a country where healthcare is in the hands of private companies!

hth

Niall

That struck me as funny for some reason.

I think it's best to just be yourself... true self, not the manufactured robot you may have developed to survive socially. During my assessment: I cracked jokes, shared my off-the-cuff observations, and didn't try to filter my thoughts before sharing them.

That was what passes for humour in my strange little mind.

Bear in mind that general practitioners have studied medicine for years and don't usually feel comfortable being told they might be wrong. Tell them that you didn't give them enough information and the story changes.

Doctors do make mistakes. Good ones know this. Here's my thinking:
Let's say you have a runny nose, a cough, a headache, aching limbs and a fever. Depending on how many of these symptoms you mention you might have hayfever, a head cold, or swine flu. If you've been out hiking you might not realise the aching limbs are a symptom of anything beyond having walked too far. If you''ve just come back from Africa you might have malaria and a head cold picked up on the plane, or any of several other exotic diseases I might never have heard of!

Also bear in mind that your average family doctor is not qualified to make a diagnosis in mental health cases. That is not his job. If you present with psychological symptoms his job is to refer you elsewhere, in the same way he'd refer you elsewhere if he thought you might have cancer.

You also have to consider that any number of people go on the internet, find a list of symptoms, decide it fits them, and they're coming down with bubonic plague or something! Doctors see this all the time!

Oh, AshRoswell:
Feel free to babble all you like. It's characteristic of Aspies. Many of us are systematic to the point of extreme verbosity - me included!

Ok, I wasn't sure if the humor was intended or not. I decided on what I wrote over "I'm glad I wasn't drinking when I read that", and "I almost fell out of my chair when i read that." I really do my best not to offend.

I agree with what you said about GP's. My comments were not assessment oriented, but I really didn't make that very clear, :-/

I agree with this! I was stressed at the thought of going for an assessment, but I knew that the psychologists (one testing and one merely observing) knew what to look for, and my job was just to do the tasks that I was told to do to the best of my ability. It's my belief that the observer was there just to watch me, and to see how I behaved while I was doing these tasks. I asked questions, muttered while doing math questions,, fiddled with my pencil, all the things I would normally do. In my assessment I was given an indication of what my weaknesses are, but more imporantly, what my strengths are. To me, this is the benefit of the assessment, and there was no loss.

It seems the ideas about what having AS means are continually changing. Some people feel it's simply an alternate way of thinking, while others put great emphasis on scores and tests and measurements. I don't know if something as nebulous as our pereceptions can be empirically measured, but it sure was fun doing all those tests

Good work Niall, lets hope NHS Fife ? or is it NHS Tayside are able to see you soon.

I remember in the dark days of the previous Tory government having to wait 18 months for NHS Grampian to see me for some cognitive behaviour therapy.

Hi

A quick update.

I now have an appointment with Psychological services on June 7th.

I was told the wait could be quite long, and this seems about normal. Mental Health services seem to be increasingly overstretched. Personally I suspect that with the Tory tendency to have people with mental health problems declared "fit for work" they therefore no longer require treatment and mental health services can be scaled down. (I saw a really good t-shirt the other day. It read "The conservatives: putting the "n" in cuts". I want one!)

I was sent a letter asking me to phone the local office. I find using the phone to talk to somene I don't know to be uncomfortable, so I wrote them an email.

As a postscript to my email I pointed out that there are people with mental health problems who find using a telephone emotionally uncomfortable. These comments have, apparently, been passed to the person responsible.

I love that T-shirt I think some of the tories think we're faking it

I'm glad to see someone getting progress done and going in the right direction, in my expierance a diagnosis has always been a positive step, not something that holds you back, but there are exceptions.

I also find it very difficult to use the phone, I much prefer writing, I'm a lot more eloquent in language when typing, although there is something appealing about the other person not being able to see your facial expression, it sort of levels the playing feild like typing does.

Good news, that time will soon pass.

I also want one of those t-shirts.

Glad you got a positive response from the GP, it sounds like the letter was a good way to communicate the details, 10 minutes is never good enough to explain complex issues.
8 weeks seems reasonable for a non-acute waiting list, especially for MH service which as said is always under-resourced. Have they told you what the assessment will involve so you can prepare?

I heard Sandi Toksvig do the t-shirt quote on the News Quiz, delivered in admirably withering tones. Heh

Hi folks

OK, an update.

I had a 1-hour appointment with a Psychologist from the local Mental Health Services team on Tuesday.

I think it went quite well.

We have a plan, of sorts, for addressing assorted needs - the main ones that I discussed with him, notably the difficulty I have in relating to humans, my self-harming behaviour, and diagnosis, which I think may at least help me in terms of having a box (Aspie trait or what, folks?) and possibly accessing services. Apparently there is an agency locally that deals with self-harming, for example.

Since diagnosis of ASDs is a specialised job, there is a dedicated unit dealing with such things. This covers, as far as I can make out, half of Scotland geographically, and substantially more in terms of population. They are so overstretched that they don't take referrals from GPs (my GP apparently tried) but only from Psychologists but the psych is doing this form me.

In the meantime I have a pile of tests to do.
The big ones, both of which have the initials "SBC" (that would be Simon Baron-Cohen) as joint author are:
The AQ (50 point) and
The Cambridge Behaviour Scale (50 point).

These go to the autism centre people, I think.

Then there is the Hospital Anxiety and Depression Scale (14 point), which I think has to do with seeing if I'm an immediate suicide risk.
Clincal Outcomes in Routine Evaluation (34 point) which seems to have much the same intention.
Work and Social Adjustment Scale (5 point)
The Freiburg Mindfulness Inventory (14 points) and
the Forms of Self-Criticising/Attacking and Self-reassuring Scale (22 point), which I expect to score dismally on.

Apparently the NHS don't like the rest of us emailing them because people go away on leave etc, and then the whole confidentiality thing goes to pot if someone else reads it. I was a little dubious about this one when it come to making appointments, and said as much. They are now going to review their pro-formas to the effect that they prefer a phone call, but will accept an email or letter if this is easier.
The referral is again going to take a while, I think, but I'll keep you posted.

Niall

An excellent thread, this. I'll have to bookmark it or something. Without knowing the exact details of your situation, I think mine must be similar...I was never diagnosed as a child but the psychologists did a lot of head-scratching and discussion over me, but I was a bit too young to appreciate what was going on. Looking back, AS awareness was nothing like it is today so the process would probably play out differently now if I were to be referred. As far as GPs are concerned...I have regular contact with them through work, so I appreciate how broad their knowledge and experience is. That said, a GP by definition isn't going to be as clued up on this sort of thing as he or she would be on, say, diabetics and flu sufferers. I mean no disrespect to them; ASD is notoriously difficult to diagnose and treat unless they're a specialist!

Fortunately we do have free healthcare in the UK so I ought to be able to seek help without feeling I have anything to lose. The big stumbling block, really, is that I'm a bit self-consious: someone who's nearly thirty, lives alone and has held down a full-time job for several years hardly looks like a candidate for ASD support! But then, misdiagnosis is more likely to have happened to an older person than a young child.

Long story short: I'm seriously considering going down this route after spending a long time wanting to, but not knowing how exactly to go about it. I'm finding this discussion really helpful, so thanks. Best of luck!

Hi folks

Quick update. It's more "nothing to report", but here it is anyway.

My scores on various mental health criteria suggest I'm highly self-critical, have low self-esteem, very low self-compassion, and meet the paper scoring criteria for Asperger syndrome, all of which I could have told them without filling in a wad of forms.

The psych still has to refer me to the specialist regional service, but seems more concerned about my low self esteem and suicidal tendencies, which I can sort of understand.

I've been trying to get out and socialise more with the humans now I have a better grasp of the nature of the problem, although solutions remain elusive.

More when I get that appointment. At the moment it feels like more *if* I get that appoinment.

cheers

Niall

Thanks for the update. I also live in Scotland (only just on the mainland), and have an appointment tomorrow with the mental health team.

Question: how do you persuade them to take it further and do a formal assessment?

Getting a referral from my GP was no problem, I just outlined my concerns and he wrote them a letter. But the same thing happened last year and all I got was an hour long interview with a man who refused to commit either way. I wanted a diagnosis, yes or no, not just a chat. After the talk I remembered lots of things from my childhood that I wish I'd mentioned. I expect the same thing will happen again tomorrow. How do you persuade them to take it further?