Wednesday, 26 November 2008

Tuesday 25th November 08

Up at about 7.30 as Ruth usually leaves the house at about 8, I had a shower and some cereal and we went. Ruth dropped me off very near Ealing Broadway and continued off to work.

I went to Oxford Circus, changed trains and went south to Brixton, which is only a short walk from Denmark Hill, along Cold Harbour Lane. Ruth had photocopied a page in her London map book so I knew where to go, and by 10am I was at the Maudsley.

I waited an hour, reading my NewScientist, and at 11 was collected by a woman who spent the next hour explaining what the day would contain, and doing some rather odd tests and questions and exercises in order to start assessing me. She asked a colleague in to observe and help her with the assessment. The exercises included going through a children's picture book and explaining what I thought was happening, and making up a story using 5 random objects pulled out of a bag, a task I found quite difficult. But she also asked lots of questions about my childhood, friendships, how I'd describe various feelings like happiness, etc etc, so it was quite an intense hour.

Then I had a two-hour session with a Dutch Doctor who did the clinical assessment, about my health and development and lots more. I was invited to explain why I thought I'd had ADHD and subsequently been identifying with some aspects of Aspergers Syndrome.

That finished at 3pm and I went for lunch just down the road, having a plate of very yummy chick-pea stew and rice, and got back to the Hospital for 4pm, as agreed, where I was seen by the whole team including the Consultant. He asked a few more questions and referred to his diagnostic manual a few times, and then asked if I'd have 5 minutes in another room whilst they had a talk, and when I was brought back in, he explained their decision.

It is clear that I did have ADHD as a child, but at that time it wasn't named and I was just regarded as a bit odd, naughty, disruptive and 'bright but lazy'. However, possibly due to growing out of it and/or all the self-development work I've done, I do not exhibit so many of the symptoms or diagnostic features now to be classed as having ADHD. There is a big overlap between ADHD behaviours and some Autistic traits. I do have some of the 'typically autistic' traits, but again, not enough of them to be 'labelled' with Autistic Spectrum Disorder or 'High Functioning Autism', known as Aspergers. So I don't fit any diagnostic criteria, which the Doctor described as 'good news'. There was some discussion as to where I might go from now, what I could do about continuing to improve my behaviour, and I will explore those. The medics will interview my mother when she returns from holiday, just to try to find out some more about my behaviour as a child, and I'l be sent their report in February.

I left feeling quite down as I really wanted to put my diagnosis 'in a box', labelled, so I felt I knew what I was and why I behave as I do, and had a clear way forward with definite outcomes. But as my unique mental set-up doesn't fit any one set of criteria and therefore isn't 'nameable', I feel a bit 'in limbo' or in no mans land. I sadly walked back the mile or so to Brixton and went right up to King's Cross, where I wandered round pretty aimlessly for a few hours waiting for my 10pm train. At 8.30 I waited at where the track-side pub used to be (shut for refurbishment) for a possible meeting with Diana from FlipSide Vision, but she'd been at an AGM and didn't turn up. So at 9.30 I went to the main hall and chatted to people whilst waiting for the platform to be displayed.

The train was lovely and warm and my fellow passengers were friendly and jolly.

Back into York just after 12.30, home just before 1am, really glad to see Gill.


Anonymous said...

John, my dear brother.. you will always just be John to me.. Pain in the neck you might be at times, and i may not agree with some of the things you do, but I still love you :-)

Dont let it get you down that they can't put you in a box.. you would probably just fight your way out of it, then recycle it anyway lol

Anna xxxx

Aliboo said...

Dear John, I'm sorry that things didn't go as expected. I can understand how disappointing it might feel, to not have this sorted, or at least pointing in the right direction, especially after hoping and expecting for so much, for so long.

But like Anna says, you are John. The truth is very simple, you are no different today to who were the day before and who you'll be tomorrow.

Perhaps the comfort of a label or medical explanation, would have been helpful to you being you. Maybe not though, as I reckon you'd have broken out before long.

So you're just going to have to be like most people and 'pretend' you know what makes you tick!! Or maybe be like the majority of us, who only, if they are extremely fortuate, get a glimpse of what life really means and can begin to understand people, who have never had the opportunity to understand.

More importantly you are John without label or pigeon hole. Had this week ended with you being John with label or pigeon hole there would have been little difference bcause it would have just been you.... not ignored but a given understanding and celebration, that you are John.

Compost John said...

I received an email from one of my old friends whom I've known for well over 20 years, so I've copied/pasted some of it, minus identifiers into this comments box...

"Hi John

Ruth rang me last week to say that you were staying with her. I did call but managed to miss you both.

I wondered if you had been to the Maudsley again so I read your blog and was sad to see that you are not happy that you don't have a "diagnosis"/box.

I do know how important a diagnosis can be.

However the little light that went on was when I saw XXXX today.

He was so focused on his sisters wastefulness, pointing it out 3 time in a 20 min visit....XXXXXX [my friend's partner] becomes just like that sometimes...nothing to do with his manic depression....everything to do with genetics and upbringing !!!!! BING LIGHTBULB MOMENT So that why one bit of him is as he is.

I hope that it is helpful to say that you do have a diagnosis but it is rather more complex than saying ADHD or Aspergers.

I could give you a diagnosis of why [my partner] is as he is but it would run to a sheet of A4 not just have the words manic depressive on it.

You know nothing to do with biology is ever simple...but I do appreciate just saying "Well, I'm John (or XXXXXX) and this is how I am" is a very hard concept to convey to other people it is sometimes very nice to be able to encompass ones character with one word.

Anyway why don't you either say "Well, I'm John and this is how I am"
or think of how you would write out a sheet of A4 for the times when people do have time to listen
or maybe just say "I had ADHD as a child and have become an unusual/eccentric/special (word of your choice) adult as a result".....

If any one of the three options doesn't grab the attention of the person you are talking to then you are probably talking to the wrong person.

Or you could try the famous wisdom of granny XXXXXXXX.....people will either like you or they won't...if they don't like you it is THEIR loss.

I hope that you shake off the blues and relax back into being you.

Take care"

I am very grateful of these words of wisdom from my friend. So true.

So, I am 'just John', undiagnosable, complex, hard working and productive but chaotic and untidy, comfortable in routines yet experimental and happy to try new stuff, very open and honest but occasionally inappropriate....

I feel better already!