The day after.

On Saturday I went to Mumsnet Blogfest. It's the third time I've been to this particular blogging conference, and it was excellent. Particularly the 5 minute Think Bomb from Francesca Martinez - "loving yourself in this society is an act of civil disobedience".

(You can read more about the whole conference experience on my main blog, Making it up

It made me think about my life post diagnosis. I'm still working through who I am - the answer is of course that I'm exactly the same person I was beforehand. But now I have a way to understand myself a little better, and with that. I can start getting a handle on how I can make my life a little easier. I do think a lot of my problems are external - as Francesca said, there's a lot of conformity required in day to day life, and that doesn't bode well for someone who doesn't conform naturally. But I can also refuse to have velvet in the house ;)

Anyway, on the train on the way home, I wrote something that I'm going to transcribe here, to share what the day after a big event feels like inside my head.

***

Waves and waves of sad. Post event crash. I'm fighting tears, and have been ever since I said goodbye on the tube.

Aware that I don't know when I will next get to just be with someone who gets it, who accepts me, who I don't have to explain to, although I can, although often explanations start with "do you know when" and become "yes but always" and "isn't that normal?"

So much of what is within me isn't normal, ordinary, average, usual. Typical. I'm not typical.

Neurologically challenged said Camila yesterday as she asked people not to take pictures. Did she mean by the pictures, is she challenged by people taking likenesses of her, or was she actually asking people not to use flash?

Imprecise. I am sometimes imprecise
 (and someone sneezed
   and I am derailed
    (on a train))
but more often than not that is my failure to understand the misunderstanding, not knowing what the gap is.

Because it's all obvious to me. All normal and logical and just because.

I know that other people don't cringe at the sensation of velvet flowing over their skin. I know this objectively. And yet I do not know how they can not.

Passing. I think I pass for normal pretty well. Particularly in short doses. And yet I'm also increasingly aware of how much effort that costs me.

And now I've run out of words.

***

Like I said, that was on the train on the way home on Sunday. I got in, grabbed children, and we went down to the beach for an hour in the afternoon sun, then home via the war memorial. I managed pretty decompressed by that evening, and even cooked dinner from scratch. Then however, I've found it very difficult to regain focus over the last couple of days.

I'm worried that if I post things like this, people will start to think I can't do things I absolutely can. I absolutely can come to a conference, talk techy, be interactive, helpful and so on.

I may not however have the first idea of who I spoke to by the end of the day. I can't easily track faces to names to online profiles - last year the bumpable badges were an absolute lifesaver.

I can do technical things with your website. I'm very very good at that. I'm not good at small talk, and I'm never going to find my funny online.

I guess if I want to be out, I just have to take whatever reaction to it comes.

I forget to tell him about sponges.

Been quiet here for a little while, sorry about that. I've been mulling and struggling with words to describe what I'm going through. I'm going to go for emptying my head on to the page, and you can make of it what you will.

I've now had two meetings with a clinical psychologist for the purposes of diagnostic assessment. We've spent about 4 1/2 hours talking our way through a DISCO which in this case isn't a dance with flashing lights. Instead it's a structured interview covering every aspect of development. It's best done with a parent, but that wasn't feasible, so we had to work from what I knew.

And despite taking over 4 hours, I'm still thinking of things I didn't say.

So we talked about textures that I find problematic - velvet makes my hair stand on end. Literally. You can see it. But I forget to say that certain textures of sponge do much the same and I can't touch them, and that I don't like sticky paints or doughs or things like that on my fingers. (Or probably anywhere else, but you don't tend to paint or knead dough with your feet.)

We talked about literal understanding of language, and I explained about parsing everything multiple times and working out the most likely one. And how frustrating I find wrongly worded things, like the painted sign on the road that says Keep Clear. What, I should somehow vault my car over that space? You actually mean don't stop/wait here don't you? But I didn't tell him about the numerous occasions when I miss the joke, or I'm in a conversation, and I gradually understand that there's a whole other conversation going on that I just haven't picked up on.

We talked about hugs and greetings, and I mentioned the minefield that is social greetings. Are you going to hug me? Go for a kiss? One cheek or two? Which one first? I said I'd like it if people had greeting cards that they handed out - but I knew some people would hand out the wrong ones. (I remember a woman who used to sign off her emails "beware, I may hug you!" and then I went camping with her and never saw her hugging anyone, and she certainly didn't hug me.)

Do I like being hugged? Yes. But I don't like being draped on. (I forgot to say that.) A hug has to be defined, if that makes any sense.

It feels like there were more things I didn't say than I did say.

It also feels like a test I failed.

I'm not sure what I'm looking for here. An excuse? A reason for being so socially inept and incompetent? Absolution for all those times that I just haven't understood, that I've put my foot in it, said something that other people find beyond the pale?

I really don't know any more. In the pre diagnostic interview we talked about whether I wanted to go forward for diagnosis and I did, I very much did. But now, with diagnosis hanging in the balance and feeling that possibly I just didn't present as sufficiently autistic, now I'm ground to a halt. What if I'm not autistic? What if I'm just bad at people, what if there is no excuse?

I now have to wait for probably a couple of weeks I guess before I get the draft report in. Somehow I've got to pick myself up and actually do things in that time. Like trying to earn a living, as well as just the day to day tasks of having a family all around me. I'll manage - today we were out in the garden by ten, with chalks and bubbles, then we came in and did painting, we had food and snacks (home baked banana cake) and we'll try not to think about all the unwritten blog posts and emails.

I recognise this feeling, this state. In the past it would have been called depression, but I'm not depressed. I'm empty. Of energy, of emotion, of point. I'm Clockwork mouse, my spring's wound down and I need winding up.

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?