Monday, 24 March 2014

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?

21 comments:

  1. Gosh it's really happening! Happy for you xx

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    1. Thanks Tech. This was such a different experience to every interview and exchange I've had before. It was a massive relief.

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    2. I'm fascinated by the process. Did she have a list of questions to ask or was it more of a chat scenario?

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    3. It was a chat, though I got the impression she had some specific areas to cover. I think she had a prompt list to work from, but it was a very organic process rather than an interview if that makes any sense?

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    4. Yes, it does :-) Thanks. Look forward to hearing about the next stages.

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  2. I think you're fab btw!

    Well done for persisting in chasing down a diagnosis. Glad the lack of uncertainty is bringing a certain sense of relief. xx

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    1. The thinking fab thing entirely mutual.

      Thanks.

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  3. *waves* hi jax, I'm amanda and i have ADHD (took over 2 years to get dx, had to really battle, as apparently adhd only exists in childhood!!) from personal experience once i had my dx i could piece things things together iyswim. xx

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    1. Hi Amanda! It's a level of understanding isn't it, that's what it's about. I'm glad you got there in the end and that it's been helpful for you.

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    2. its just different brain wiring - like you I home educate, and like you i have 4 children, (eldest now at college) all of my children have adhd or/and ASD. It does make family life challenging at times but I've learnt to keep adjusting what we do so life runs a bit smoother. A dx does help because then you can understand why some things are difficult and then you can work out solutions to help.

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    3. yes, I think that we will be smoothing things out around here a bit more now.

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  4. To be honest I thought you had already been diagnosed, and then felt my usual awkwardness when I met you as thought I must have been wrong (you seem to deal with social situations much better than I feel I do). But then my oldest son comes across to people as shy and he was dx at 10. I hope the process goes well for you, and thank you for sharing.

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    1. I think I am quite good at faking it. I find social situations utterly exhausting though, big ones will have me in fits of nerves for days before and practically catatonic for days afterwards.

      Thank you

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  5. Thanks for being open about it - because it isn't anything to hide away, and I hope that from now every child gets diagnosed as early as possible so they get help, and that adults can have a retrospective diagnosis to help them understand the past. Sounds like you're OK with the idea which is good :) x

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    1. It annoys me that there isn't just support available. I've heard it said that adaptations made for ASD children actually benefit the majority of children - making sure that instructions are clear for example, and that language is straightforward. Why is that so very difficult to do?

      I'm very OK with the idea, but it is shaking me a bit today. I think I have some sorting to do, of which bits are me, and which bits I've just been faking, and don't want to any more.

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    2. This is interesting - I've found, since embracing the possibility of AS, that I'm more unashamedly me, but I can't put my finger on how that is. I don't think I've ever faked anything (just utterly rubbish at pretending full stop) but I dont know if that is so. Be interested to hear (though understand it may be difficult or you plain might not want to go into it) how/why/what you think you might have been faking. xx for the shakey bits.

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    3. Not ignoring this question, meditating on it, for a future post.

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  6. I gave up on a concept of 'normal' a while ago. It's a brave thing to stand up and explore the possibilities of a formal diagnosis as an adult and I hope it goes some way to helping you fit the pieces of you together a little more easily (because that can be a tough thing to do).

    As for early diagnoses - the team here are swamped, by the sounds of it, and I've known families have to fight and fight to get any kind of support for their children.

    I don't know how I feel about labels, but on the other hand, it can be helpful to have some sort of explanation for why things in your head, reactions, whatever, don't really match so many of the people around you (if that makes sense). People can be rather exhausting (thank heavens for t'internet ;) )

    FWIW I also think you're fab. x

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    1. Thank you.

      There's no support around here that I know of for children. I daresay there might be for children with full on autism who do get some support, but there's not a lot if you're mainstream capable, and none outside of school.

      I think it's the explanation that I'm really looking for, but the label might be a useful shortcut in dealing with other people at times?

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