Asperger’s part 3

So I had planned to blog this out in real time – but we’ve actually skipped a few stages requiring a bit of recap. Nonetheless, this seems to be a long and repetitive process, so I’ll summarise.

I went and saw my GP, who is a lovely lady. She listens, she cares, and she doesn’t have any truck with bullshit. The consultation didn’t really go as I expected. This is probably partly due to how I described by problems, partly due to her initial strong impression that the problem might be social anxiety, partly due to the fact that my expectations for how it would go were way off kilter.

Let me explain that a little. My husband (who has dyslexia which took ages to diagnose) came along to the appointment, and was really impressed. The GP listened, set up an action plan, and arranged a follow up appointment. In my head, it would be a case of me stating my case, getting asked some detailed questions about Asperger’s, and then being passed straight on for a referral. What actually happened was that my GP understandably said that only having known me for 10 minutes, she couldn’t really make that sort of assessment, and asked me what the main reasons I had for asking for help were.

Now I have lots of difficulties dealing with people, but the worst of them is a tendency towards panic attacks/anxiety attacks. So when she asked me what precisely it was that brought me in asking for help, I quite honestly answered, ‘the panic attacks’. This has obviously triggered a whole line of investigation into social anxiety that I wasn’t really expecting, and very little questioning on the AS front. The trouble is that the problems that I think may all add up to something on the Asperger’s spectrum (even if not full-blown AS) are not so definable, obvious, and tangible as the freak outs are. They are all things that other people experience to a lesser extent, and not in themselves outrageously weird – together though, I think they build up to a bigger picture.

They are things like an utter mental blank at the idea of small talk. They are a serious dislike of unasked-for physical proximity to other people – crowds, or just someone sitting too close, or well meaning but huggy churchy-type people. There is the difficulty at seeing other people’s point of view, a very literal sense of humour which often gives the impression that I have no sense of humour at all, and some fairly OCD obsessions with touching things, or having things in the ‘right order’. There is the difficulty with having to have my whole day planned out, and also with changing those plans. There is also my apparent inability to spot other people’s emotional distress unless they are actually sobbing their eyes out, in which case I am probably the most uncomforting person out there (you have a problem? How do we fix it?!). This also translates into frequently offending people and not realising it, or talking someone’s ear off with no idea that they are bored stupid by my monologue. Ask me about something I’m interested in and expect to be there for days.

Where the GP consultations have focused on solutions for the immediate problems of panic attacks, and a suspected root cause of social anxiety, we haven’t discussed the above problems much. Nonetheless, she has given me a referral to the ‘Gateway’ service – which is actually a remarkably efficient system. The GP refers cases such as panic/anxiety/depression/developmental concerns (such as AS) to the gateway worker, who assesses the needs of the patient, and how quickly they need to be seen. An appropriate referral is then passed to the relevant services, and the patient hears from them directly. I have to say, I’m very impressed so far. The gateway assessment people are under the impression that while I remain concerned that AS is an issue, it should be fully investigated – so I am now waiting for a letter to hear about when my appointment will be. I’m not really sure what the assessment itself will involve, but I’ll obviously write it all up.

Next steps

I’ve been told there is a wait for up to a year for AS assessments, so this could take a long time. The gateway worker is hopeful that it could be as little as 3 months, but either way, there is a bit of a wait involved. In the meantime, I think the idea is that they will be my point of contact for further care. So we wait and see!

*UPDATE* The above section actually needs a bit of clarification in light of recent events. When my GP discussed referral with me, I had two options. The first was Cognitive Behavioural Therary (CBT) for social anxiety. The second was a route towards an assessment for Asperger’s. Wanting it at least ruled out/confirmed, I of course plumped for the Asperger’s assessment.

As soon as I said this, I was told that my GP had spoken to the Gateway services person, who had told her the wait was to be at least a year. She asked me if I was sure that I wanted this option. To my mind the waiting time makes no difference. If I were to come into a doctor with a migraine to be told, ‘you can wait a day for migraine medication, or have a lobotomy right now’ I’d probably wait for the treatment that seemed more appropriate. I was non-plussed, but went with it. I was then told I’d be contacted by the Gateway service in the next two weeks to arrange an appointment with them, prior to the actual Asperger’s referral.

Three weeks later, I called the Gateway service. They were efficient, friendly and helpful. They had only just got the letter from my GP. Not only that, but I didn’t need to see them at all. They are just the centralised service that passes around referrals. Furthermore, when I asked the guy there about the wait for an Asperger’s appointment, he casually replied ‘Oh, no more than 2-3 months’. I was obviously suprised and told him my GP had predicted about a year – he told me that there has never been a waiting list that long, and he would never say that.

A few weeks later still, and I called the Asperger’s assessment people I am being referred to in order to get some more information on the process of referral, and what I would need to do. They got the referral from the gateway service very promptly, and were reviewing my case. All well and good. When I asked about the waiting list, I was told it was, and only ever had been 2-3 months. They gave me lots of helpful information, and I came away happy.

The weak link here appears to be at the GP level. I work in sales and I know the theory of the ‘unattractive option’. It is a technique used as a bargaining chip either to ascertain that the customer (or patient in this case) really wants what they are asking for, even if you make it sound unattractive. You either talk them round to what you want, or make sure that their mind is going to be unchangable. I have been ‘unattractive optioned’. The process to get a referral was made to sound unduly long and complicated, with many appointments with various different agencies – where actually it looks like although I’ll have a bit of a wait, it’s remarkably simple.

My opinion of my GP and the consultations I have had are somewhat modified by this experience, but it is at least a familiar one. In getting my nephew diagnosed, his parents found that it involved 4 or 5 different non-specialists telling them that the kid definitely didn’t have AS, until they finally got to see some specialists whose reaction could probably be summarised as ‘well duh, yes this child does have Asperger’s’. If I had to cite one of the biggest hurdles of this process so far, it’s been in getting taken seriously enough to get the referral through, and being reliably informed about the process. Hopefully, the worst of this is now behind me. Now to sit tight and wait for the letter from the Asperger’s unit!


2 thoughts on “Asperger’s part 3

  1. Where’s the next episode, dammit? Where is Aspergers Part 4?
    Part 3 came out in January and the man – the helpful man – said 2 to 3 months was all you’d have to wait and yet it’s May now and still I cannot find even a tantalizing trailer hinting that Aspergers 4 “The Assessment” could be coming to a website near me … SOON!!!
    Seriously, Amandycat – I’m desperate to know the outcome of your assessment. I’m waiting on one myself – having fought my own battles with annoying, unqualified know-it-alls to get even this far. But, y’know what? – until I get a letter of confirmation direct from the assessment facility I’ll still never believe 100% it’s finally happening. Please say yours is still going ahead?
    Btw, you’re the only other adult UK female I’ve encountered who’s waiting on a “late life” diagnosis too. I thought I was the last!

    • Sorry for the wait! I actually just got the letter this week with my appointment – to the day 12 weeks since I gave in the assessment questionnaires. My appointment is the end of the month, but until that point there isn’t any real news – just a letter with a date!

      The only extra I have to offer is that I know that the appointment is expected to be 2-3 hours (though this may vary, no idea). I need to bring my mum if possible, or another adult who has known me since childhood, and they’ve asked if possible if we can bring my early school reports.

      I had started to get to ‘is this actually going ahead?’ but my only advice is that you are a patient not a problem – if you want more information then call them and ask.

      It’s been a long and frustrating waiting game where at every long wait I start to doubt myself and stress about it more and more – sorry yours seems to be much of the same. At first I felt like I had no ‘right’ to try and get help until I had a diagnosis of some kind, and felt like something of an imposter when I asked for it. Nonetheless, and are full of people on the long wait for a diagnosis who ask for help (and get it) for asperger’s-like issues. Even if it’s not asperger’s, it’s still something you need help with. They are also FULL of women asking for help or advice about diagnosis. I also found there was little information on women with AS, or how to know if you may have it. These websites have been absolute lifesavers for good advice (who knew I could manage busy Sainsbury’s without a meltdown if I just wore headphones?).

      Asperger’s part four to follow AS SOON as there’s news. 🙂

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