Pre diagnostic diagnosis?

Today was my pre diagnostic assessment with a case worker and support worker. I'd rearranged it from home to their offices, as I really couldn't see I would be able to focus on an interview with two small children round and about. This way the children were safely occupied at home with Tim, and I could give the interview the attention I deserved.

I arrived early.

I never arrive early.

Except for job interviews. And actually, I can do early for trains and so on. I suppose it's usually child oriented stuff I'm not early for.

Anyway. I was nervous. I'm sort of still nervous in an unwinding gradually kind of way. I didn't really know what I was going for, who I was meeting, what they would be like, what their expertise was, or anything, and this despite having rung up to query the whole thing with the team secretary.

I now know that they are a newish team, operating since last August. They've varied expertise, and two psychologists on board. This interview is about information gathering, and explaining the process, which can take 3 months or thereabouts from here, depending on access to the psychologists, and how many follow up sessions are needed. Sometimes people have to do the whole DISCO, other people go at it other ways.

We gathered lots of information. Memories from earliest childhood, right the way through my life. And at the end of the interview, the case worker looked at her pile of notes and said "well, you've got masses of traits. If you want to proceed to diagnosis, I'll put that through."

She then proceeded to refer to my diagnosis as a certainty. And I felt a massive sense of relief. I can begin to understand myself. My suspicions are completely validated.

I'm not a broken or incompetent normal person. I'm autistic, and actually, I've done pretty well to do all the things I've done through my life, passing as normal. I'm not going to go into great detail here as to the difficulties I've had, or explain or justify my desire for this diagnosis.

I'm just going to say I feel a lot better about myself now.

I'm Jax, and I'm autistic. How are you?

Getting started

Somehow yesterday I ended up reading a series of posts on Musings of an Aspie, about executive function. It's an excellent series of posts, I recommend them. Part 3 was the one that really called out to me just now. This in particular. Initiation is the flip side of inhibition. It’s the “getting started” phase of an activity. People who struggle with initiation are often labeled lazy or unmotivated. They commonly get asked variations of “if you know what you have to do, why don’t you just do it?”

I am really massively good at not starting things. Actually, it's utterly ironic that I pondered the big picture/small details question on the phone assessment at all - I drown in small details.

The house needs decluttering. We need less stuff and more storage. A good way to go about this, two birds with one stone, would be to sell some stuff, and spend the money from it on shelving. (I have a mental picture of shelves around the alcove where the TV unit currently stands. Room for the DVDs and the computer monitor, but also for the probably hundreds of unloved books currently languishing without homes. And for the unpurchased montessori resources for the montessori corner I envisage against the wall.)

Great. So why haven't I done it?

Well, what's the best way to sell things? Could it be ebay? What about gumtree? Maybe a facebook group. And then I found the perfect facebook group, local to just our town, so I wouldn't have to worry about postage (packaging. Couriers. Receipts. Claiming for things lost.) but they won't let me in. And instead of just finding another group (there are many) I applied several times, and asked local friends to assist, and wasted another week.

Small details. Drowning. And nothing actually done, despite the flurry of activity around the ideas.

Initiation is my biggest issue. I don't know where to start if I don't know where I'm going to stop. If I can't hold the whole plan or system, if something is unknown, I waver and procrastinate, and tweet, and read something, and maybe do a completely different article, or read a book....(or write a post on initiation) and there you go.

Or you don't.

The other stopping point is fear of failing. And yet not doing is the ultimate failure isn't it? Not actually trying? While things undone stack up around me (metaphorically speaking, it's hard to stack unwritten blogposts after all) I beat myself up - what if I do it wrong? What if I don't understand what I'm supposed to do? What if the brand/company/my readers don't like it?

Paralysis.

I need some techniques to defeat all of this. To get me past the scary blank white page, to work out how to banish the *but if you'd sold it on xyz you could have got this much* that I will find echoing round my brain if/when I do finally sell something. (There is no out of sight out of mind with obsessional thought patterns.)

Anyone any ideas? Tried and tested tips? (And please, don't waste my time by telling me to pull myself together, snap out of it, get my finger out or any of those platitudes. I can and do say them to myself. They don't work.)

Big picture or small details?

This is one of the questions that I was asked in the phone assessment the other day.

I'm not actually sure what the right (autistic) answer is supposed to be. I also don't know what my answer is.

When I was a programmer (a very successful, rapidly promoted and highly rewarded programmer) I was only good once I'd absorbed the entirety of the system I was working with. I was fortunate - I joined the development team during a smallish phase of development. The next phase was big, and I took the high level documentation home and read it.

And read it. And read it again. And drew diagrams (object heirarchies), and underlined bits, and took it back into the office and somewhat diffidently, given that I was a beginner, lowest of the low, not even on the proper programming grade, asked about some of the bits that didn't seem to tie together with what I understood of the system as it existed.

It turned out that the new features were going to require a fairly comprehensive redesign of the system as it stood, with some quite extensive new programming. Which wasn't obvious from the outside, so hadn't been flagged up by the analysts, and none of the senior programmers had looked at the analysis documents yet, as they were busy working on the previous phase.

So, is that small details or big picture? I can hold the big picture in my head. I knew my way around that system blindfold. But I have to be able to understand it to do it. And to understand it I take it apart, right the way down to individual code snippets at times.

I did exactly the same when I moved to a new company and a new system.

It made me slightly unpopular at times :/

But once I was in the support department, heading up the java team, I came into my own again, because understanding the system lets you zero in on the details that might be causing you problems. And once I understand the system, I find that easy to do in a way few people seem to. I've joked before now that I think in objects - it's a good way to split things up.

Now if only I could do that with my life I'd be sorted. But I can't. And don't think I haven't tried.

Ten questions.

Yesterday afternoon the phone rang.

I don't like answering the phone - never really have. So I'm at a disadvantage instantly. The voice on the other end introduced herself - I've no idea what she said her name was. She said she was a mental health link worker with a triage team? and wanted to know if I felt comfortable going through an assessment questionnaire over the phone to see whether I should be passed on for referral for autism assessment.

What I should have said was no way.

But I'm not particularly assertive. Especially if you catch me unawares.

Before the questionnaire she asked some questions about my background and why I suspect I might be autistic, those were fairly straightforward to cover, although not in great detail as I wasn't prepared.

Then on to what she called the AQT. Ten questions, each to be answered as strongly agree, slightly agree, slightly disagree or strongly disagree.

1) You hear noises other people can't?
Seriously. This is an assessment question? Yes, as it happens I can. Was driven up the wall by the sonic mouse repeller we had, even though I'm half deaf. I could hear it ticking. Very irritating. Does this mean deaf people can't be autistic?

2 - You can tell what people are thinking from facial expressions.
No. Not particularly.

You find it easy to do more than one thing at once.
You see the big picture rather than the small details.
You find it easy to refocus on task once you've been interrupted.
You categorise or collect things.

You find it easy to tell the intentions of characters in books.
Eh what? I can tell what I think the intentions of characters in books are. But books aren't real people. Characters in books have to be slightly predictable or the book doesn't hold together. Real people aren't like that, they don't have to be internally consistent. You're going to base an autism assessment on fiction?

I can't remember all the questions. Usually I'd be good on something like this, recalling the details of a conversation. But I was very stressed during this - a pass/fail test effectively without warning, and I didn't know what the criteria were. (Oh, there's another question. Something about perfectionism.)

We got to the end, and she tallied it up and started umming and ahing. You're borderline for referral she said.

Seriously. You're going to assess an intelligent (highly intelligent actually, but let's not brag too much) woman over the phone with what feels like an internet questionnaire and tell me you can tell that she's not autistic enough to talk to a specialist.

I didn't react well to this idea. So not well that I will be being referred to the adult assessment team. I didn't know that we had an adult assessment team - google tells me it started taking referrals in October. This might explain why the first GP said I would have to be referred out of area for assessment.

So, another step taken. Is it just me though, or is this starting to feel like a comedy of errors?

Seeking diagnosis - or external validation?

Yesterday I rang the GPs for yet another try at getting a referral for possible diagnosis of aspergers/ high functioning autism. 

They have a new system now - you ring, speak to a receptionist, then get a call back from a doctor who arranges an appointment if necessary. Except yesterday they didn't have any (female) doctors' slots left, so I rang back today, and was told that they shut at 1 for training, so I was pushing it. (No, they didn't tell me that yesterday. Thank you.)

That was around 11 am. So then I waited for the phone to ring. And waited some more. And it didn't ring. 

Until 3 o clock, by which point I'd assumed it wasn't going to, so wasn't prepared.

Why do you want a referral? 

I want to understand myself. 

I also want other people to appreciate how difficult I find the world. I want to be able to say no, I don't find meeting people difficult just like everyone else does, I find it physically exhausting and draining. I want to be able to explain executive function issues, and repetitive thoughts, and difficulties with social interaction when other people find it acceptable to lie and fabricate stuff and I just don't. 

At which point I start to feel like I'm whining. I'm not whining. I genuinely want to understand myself. I don't want to be fobbed off again, by being advised to find a church (yes, a doctor told me that), or by being given a link to online CBT (1 I can't do it, 2 it doesn't help anyway). Or by being medicated. Most medications do nothing except clog my brain, they don't help. 

Yes, I've had medication. Counselling. Advice to join a church. I've been struggling with anxiety and depression my whole life - except I think I haven't. I think really I've been struggling with thinking differently, reacting differently, feeling other, and lesser and wrong. And I don't want to feel all of those things any more. I want to accept me, and learn how to handle the bits of the world that give me difficulties, and find the confidence to be up front. 

I worry that asking for a diagnosis might somehow backfire on me. That people will somehow think I'm not the person I've always been. Or that I can't cope with my children (I can, at least as well as other parents do anyway!). I worry that I might not get the diagnosis, that maybe I am just normal and actually incompetent. 

It was a difficult conversation, not least because it came out of nowhere. And doing it over the phone? Ugh. The gp kept asking me questions, then telling me to slow down because she was writing things down. And then she said she'll refer me to community mental health. But apparently not to the mental health nurse, instead this time it will be a psychiatrist.

I don't know whether I'm going to get any further this time. But at least I've tried again. 

It is utterly ridiculous that it is *so* hard to get help with this kind of issue. Or am I whining again?  

 

Spinning in circles, wading through mud

Sometimes it feels like I go far from myself. Or that a part of me fades away. I'm not quite sure how to describe it. I'm not sure the right words exist.

It leaves the remaining part of me feeling as if it's wading through mud. Or that it would be, if it had the energy to wade. And my diminished mind spins in circles trying to work out what to do, where to start, how to finish, what to do, and I circle in smaller and smaller circles until I stop.

I think it's episodes like that that led to a diagnosis of anxiety and depression years ago. Except I don't think that that is quite what is going on. It's more a decision paralysis, or using up what energy I have to be externally like other people.

This morning I used up myself throwing out mugs.

I know, that sounds ridiculous. But I struggle massively to dispose of things. Given that the house doesn't grow, and the people within it do, that leads fairly rapidly and obviously to problems.

This weekend, I read a rather wonderful book, A 100 pieces of me, which I will review shortly over on my other blog. During the book, the narrator downsizes her life, and one of the things she does, is get rid of mugs. We have lots of mugs, acquired over our joint lifetimes, more than we ever use. And so I decided to get rid of some. I got them all out, and sorted them into precious to keep, every day to keep, and disposable. 12 went into the leaving pile, which meant I could reorganise the mug cupboard, get everything back in, as well as the Kentwell pottery off the side where it's been living, *and* I could get the assorted tea and coffee pots into a second cupboard, *and* have spaces on a shelf in a third.

All excellent. Except that was it, me worn out for the day. I did some emails, tweeted half heartedly, and completely failed to keep up with a discussion on the changes in the facebook page algorithms.

I rather wish I did have the energy to spin in circles physically, it would be a lot less emotionally wearing than doing it internally. Sometimes I feel like I might just vanish under the decision trees in my mind.

I'm not sure I've explained any of that. It will have to do.

Choosing me.

I have struggled with who and what I am for many years. Throughout my childhood my mother would ask me why I was trying to be different, and I would say that I wasn't, I was just trying to be me.

But as I grew older, I tried more and more to fit in, no more sitting on top of the shelves in the room. Sensible jeans and shirts, no more cowboy boots. Sitting quietly in groups instead of asking the questions I want to ask, making the points I want to make, saying the things I want to say.

And it's worked. People don't realise how incredibly difficult I find group situations. They don't notice that they spend a week with me and somehow we don't actually talk. And I come home ready to explode with the tension of the situation, bubbling over with all the things I haven't said or done or been.

It's probably time to change. Time to work out how to find the space to be me. Time to squeeze back a little so that people realise how much I'm being squashed.

Why should I bother, now, so many years into my life?

Because if I don't push back, I won't make room for the next generation to be themselves. They will be just as squashed, and unheard, and unhappy. And that just isn't fair.