Wednesday 12 February 2014

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?  

 

10 comments:

  1. You say you think you have Asperger's, and the GP conducts her assessment over the phone? ~headdesk~

    At least you have a referral. Congratulations for that!

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    1. Thank you. And yes - via a phonecall. Right up there, yes?

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    2. I think I'll add that my list of how-GPs-don't-get-autism...
      I'm actually quite surprised!

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    3. I wonder if it will count against me that I continued the conversation? I was massively stressed, pacing the kitchen, and it took ages to calm down again afterwards. But I'm guessing I will have come across as calm and reasoning, as that's what people tell me I present as.

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  2. *hugs* for being caught off guard, and expected to have a difficult conversation over an awkward medium. TBH the idea of being expected to have ANY serious conversation about your health over the phone rather horrifies me, never mind one about autism.

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    1. I was expecting to say what it was about and then have her arrange an appointment. Not start dragging all the details out of me there and then! And yes, as I'd given up on the return call happening today, I was completely unprepared mentally speaking. It was awkward to say the least. I suppose I should be grateful none of the children came in wailing while we were talking.

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  3. :( that it's hard! I haven't yet worked out how to have that conversation. I'm hoping that if my eldest is dismissed that may give me a lead in *sigh*

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    Replies
    1. Sorry diagnosed, not dismissed (such a bad autocorrect)

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    2. I think that does help. The lost generation of females is becoming more of a known concept as well I think.

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  4. Although different circumstances I can wholly relate to the essence of this post. X

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