My Journey To A Diagnosis Pt 2

My Journey To A Diagnosis Pt 2

Disclaimer: Normally I only post twice a week. Any more than that, I feel, is unsustainable in the long term. Unfortunately my buffer is becoming dangerously bloated – so this week you get a third post! Lucky you! 😛

In a week I’ve got to go for a follow up appointment with the person who gave me the official ASD diagnosis. I… don’t know why. I assume there’s a reason. The letter says its for “an individual post diagnostic support session“, whatever that means. Anyway, it made me think maybe I should talk about my diagnosis in more detail. I’ve already talked about it in brief in Part One, but a more detailed examination of my diagnosis is below. So here we go!

~*~

As I mentioned before, it was very easy for me to get a referral to an assessment. The only time my GP hesitated is when I mentioned I thought I would towards the milder end of the scale – but when asked to clarify I just said pointed out that I was married and holding down a job and she went back to typing up the referral.

The assessment I got was very simple – when another member of my family talked her assessment experience she mentioned in passing that she had to do some kind of puzzle test. I didn’t. I filled out a form in advance (and so did my aunt, for the things I might have missed) and then went in to talk with someone for an hour.

So lets talk about the form. I also got a big document a few weeks after the assessment as a sort of review, so I can do each segment from both ends of the process. It seemed to take me through the diagnostic criteria piece by piece, but some parts of it were more helpful to me than others.

1) Communication

I didn’t feel able to comment on my Early Levels of Communication. I have no idea how I communicated as a child. I ticked most of the classic boxes – difficulty interpreting facial expressions, interpreting things literally, finding it easier to talk in a scripted setting, etc – and added a few flourishes about I hate phone calls and having to work out social interactions as if they were equations. Technically I didn’t tick off “difficulty with current level of communication” either but then I followed that unticked box with a list of all my difficulties with current level of communication.

The post-assessment document talks about how I struggle with jokes and sarcasm (although my aunt thinks I have a good sense of humour :3 ) and how I tend to copy others reactions even if I don’t understand the joke. Most of this section of the post-assessment document was just a rewritten, more scientific way of saying the things I said on the form myself, but there was one sentence that caught my eye – “When she comes across an accent, this makes things more difficult for her because the inflections that signal various emotional states or other social cues change“. I always knew that I struggled with accents but I never figured out why. That’s not particularly important but it was interesting 😛 We also talked briefly about my facial expressions. I have what a previous manager generously called a “stern” resting face and I call a “resting b*tch face“. There’s a picture I have of me as a kid – I’m very young, maybe eight or younger. Someone has clearly said “look as the camera” and I am, with my trademark utterly vacant, emotionless expression. I should get that picture on here sometime, it’ll be good for a laugh 😛

2) Social Interaction

Well, here are my biggest difficulties. Or my most obvious ones anyway. I really, really struggle with relationships of any nature. The vast majority of my friends were my husband’s friends first – the ones that aren’t, but somehow managed to last despite me, are generally neuroatypical themselves. Almost always. I struggle with eye contact as well – I used to think I was doing ok at it, but since the diagnosis I’ve noticed that I’m really not lol. I try to do the whole “focus on their forehead” or “look at the object in your hand” tricks but the moment I need to concentrate on what is being said and my reply I always end up looking to one side.

I also find social touch (e.g. hugs) extremely uncomfortable – although I don’t really know if that’s a social thing or a touch sensitivity thing. I’ll talk about that in more detail a bit further on, but the guy who diagnosed me suggested it was probably a social thing.

He also suggested that I seem to have problems Mentalising/with my Theory Of Mind. I still don’t really understand what that is, so I can’t really comment on it, but he linked it to the fact that I’m fairly gullible or naive.

3) Flexibility of Thinking/Executive Function and Central Coherence

Basically (or at least, how the form defines it): planning and organisation, needing structure, a likeness for predictability and having special routines. I mean, there’s presumably more to it than that, but that’s how the form defines it. And one again I meet all of these requirements! It doesn’t interfere too much in my everyday life, although it does makes things mildly annoying.

I overthink things a lot. I go into way too much detail about things that don’t matter. I work best with lists, and without lists I tend to have difficultly assigning priorities to tasks. I also get really anxious when late to events (or travelling in general).

4) The section creatively named “Other”

There was something that came up in this section that highlights some of the problems I have with forms from time to time. Among a long list of other things, it asked about “Allergies” – to which I replied “Cats“. That probably wasn’t relevant, but it didn’t exactly specify.

Among the “other” things I listed that I struggled with, lifelong sleep disturbance was one of the first things I mentioned. I always have difficulties dropping off, frequent waking and night terrors. I struggled to tell the difference between minor tics, mannerisms, and stimming, but I certainly do something 😛 I also seem to have some mild echolalia, but like the stimming (?) I’ve mostly learnt to suppress/mask/appear more socially acceptable when other people are about.

I suspect I have mild dyslexia and prosopagnosia but never assessed or diagnosed and it’s not making enough difficultly in my life to be worth seeking out assessment. Weirdly, here is where I highlighted the word “dyspraxia” and wrote “my cousin has that”. A few lines later, I wrote about how clumsy I was, somehow not connecting the dots until we talked about face to face in the appointment…

I also have trouble visualising distances in practical terms – when told a value, I always need a real life comparison. For example, if I’m told something is [x] miles away I never know if it’s walking distance or needs transport (or an overnight journey or out of the country entirely) without specifically asking and being told and I can’t seem retain that information for next time. I have a similar effect with weights and, to a lesser extent, units of time.

This section is also where I talked about taking online tests – most notably the Autism Spectrum Quotient.

5) Sensory Sensitivities

This one I found really hard to judge. A lot of the stuff I do I don’t even notice I do or rationalise about why I’m doing it. For example – touch sensitivity, yes or no? If yes, not consistently. My aunt commented on how I seem to consistently wear loose dark clothing without meaning to. It’s certainly not the style I prefer, its just the one I end up wearing. The clothes I do like, I almost always end up ripping off the moment I get home. On the other hand, I don’t remember needing to have name tags cut out of my clothing when I was younger.

What about light or sound? I think I struggle with both, but my other half disagrees, saying that’s its normal to dislike someone turning on the lights at night. Fair enough – but what the constant squinting when I go outside, ducking my head, and finding it painful to look around even on overcast days? Days like today, when the sky is just various shades of grey, I’d feel much better wearing sunglasses but a) it looks weird and b) I keep losing them 😛 I also almost always have headphones in, which cuts out a lot of traffic sounds (motorbikes are the worst) – although I don’t know how much of that is subconscious deliberate and how much is incidental.

The problem is, as I tried to explain in the appointment, by the grand old age of 24 I’ve noticed that a lot of the things that bother me no-one else reacts to. So I don’t. No one else wears sunglasses on overcast days, so I don’t. No one else flinches when a motorbike passes, so I do my best not to.

A lot of my sensitivities don’t seem to matter right up until the moment they do. When I’m in meltdown/shutdown mode everything becomes very difficult. Colour, sound and light are overwhelming, touch definitely becomes unbearable (especially on my head). I’m far more likely to become overwhelmed in social situations.

6) Special Skills

I didn’t know how to answer this one. I think it’s asking about Special Interests? Well I get those.

To be honest I never felt very special or skillful.

7 & 8) Family History & Early Development

Self Explanatory. Unfortunately, neither me nor my aunt were able to answer much of this. My parents didn’t notice anything.

~*~

So that was pretty much the entirety of the assessment. I’ll let you know what happens at the follow up appointment. He gave me some leaflets and a list of websites to look at, which I…. mostly haven’t. Oops. Well I still have time 😛

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