I was in bed, drifting in and out of sleep, trying to wake up properly and dreaming about living in a dystopia with an even worse pandemic than ours, when I got woken by my phone ringing. It was the autism hospital, phoning me back from yesterday. They wanted to give me an appointment for tomorrow. I was not keen as (a) it was sudden and I didn’t have time to adjust and (b) tomorrow Shabbat (the Sabbath) starts just after 4.30pm, so it will be tight to get done on time. Nevertheless, I accepted the appointment, as there didn’t seem much choice – they didn’t have any appointments next week, so I’m guessing I’ve been given someone else’s cancellation.

I feel really anxious and upset about it, and I’m already catastrophising. I feel I don’t have time to prepare. Twenty-four hours notice is not good for someone on the spectrum! We don’t like sudden changes of plan at the best of times. Dad said maybe this will play to my favour and show how anxious I get when things happen at short notice, but I’m not sure it will come out.

Some of the panic is that I’m currently reading a memoir by a woman with high functioning autism in the hope this would help me understand and present my symptoms better and get diagnosed (I feel my symptoms are closer to the female model of autism, with better masking and use of social scripts to function in social situations as well as special interests that can be more imaginative than mechanical), but I obviously won’t finish that in time now. Also, over the past few years I have also prepared a ten or so page list of my symptoms and why I feel I’m on the spectrum to give them in the assessment meeting. That was immediately scuppered by COVID and not having an in-person assessment; now I can’t easily send it to them in advance. My parents said just to mention it in the meeting and see if they want me to email it, but I worry they won’t.

I worry that I can’t summarise an understanding of myself that I have built up slowly over the last three years in ninety minutes, with limited preparation time, and over Microsoft Teams – I’m not great on video conference technology at the best of times, and I know teams less well than Zoom or Skype, plus the internet connection trouble I’ve been having lately means I have to use my Dad’s computer, and I’ll have to load Teams onto it today.

I just feel negative about the whole experience already, which is not the best mindset to go into it. I can see it’s probably mostly catastrophising and that having more time wouldn’t necessarily help me, but it’s hard to feel that emotionally.

Oh, and it wouldn’t be complete without an NHS admin mess up. I was told on the phone the appointment was at 10.30am, but when I got the confirmation email, it said 9.30am. I emailed to confirm, but haven’t received a reply yet, and I the phone number was withheld…

I’m going really slowly today because of this, feeling quite depressed without really knowing why, aside from catastrophising. I finished my devar Torah for the week and went for a walk, but I haven’t really done anything else. I had a brief text conversation with PIMOJ (she generally can’t message at work) and she said being seen quickly is what I wanted, which is true, but somehow it seems too quick and I seem too unprepared. I’m not sure what I could/should do today, both in terms of autism assessment preparation and other things, hence posting this early in case anyone has any suggestions – by the time I check emails tomorrow, it will probably be too late.

22 thoughts on “Autism Assessment Tomorrow

  1. I know it’s hard but I think the stress will work in your favour. Autism is in big part an inability to tolerate stress and the unexpected. I really believe God is going to help you regardless of whether the NHS does. I’m trying to tell myself that too because I have a meeting on Monday with a social worker who just despises me for not being able to manage two autistic nonverbal children as well as a full time job. A neurotypical person could not even do this. But she will not relent. The stress and dread are pretty much making me useless right now. Mostly just don’t put your hope in the results of this test. Do the test as a necessary part of the process but know that other help and solutions will come.

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  2. I agree with Melanie. If you had more time to prepare, you would probably “paper over” some of your symptoms/difficulties. This would give them a false picture of you. It is really good that they will see how you react to sudden change/ new situations.As for your written list – this will be valuable to the assessors, and you could email it to them now, or after the appointment. I know it’s all anxiety provoking,but this is what you have been wanting for so long. At last you will get some answers. Good Luck for tomorrow. I’ll be thinking of you .

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  3. Good luck for tomorrow morning. Like Melanie and Sandra I think it may be helpful that you are anxious and feel unprepared. Remember – this is not a job interview where you want to convince them that you are competent and capable! If there are awkward silences and you find it difficult to find the right words to explain yourself and you therefore appear nervous or on edge, that may actually be helpful. Maybe have your list with you and refer to it if needed – you could tell them you’ve written things down as you find it hard to remember what to say when you are under pressure. They will be used to people presenting like this. They should also understand how doing assessments online with people you’ve never met is especially challenging for those with AS. Incidentally, you may have quite a wait for the outcome — my son waited 5 months between assessment and knowing the outcome. Anyway, let us know how it goes when you can. Praying for you that it goes well!

    Liked by 3 people

      1. Well hopefully the Maudsley will be more efficient than the local service. I think they took so long because the testing took place over several days and then they revised a 20 + page report five times. I think the system may also be different for adults.

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  4. Thanks! My parents will be out as Mum has radiotherapy tomorrow, but I’m not sure that I would want them around in any case, as I think it would just make it harder to speak honestly.

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  5. Best of luck! I agree that not having much time to adjust is a mixed blessing, but is mostly positive. You don’t have as much time to catastrophize and get nervous. Sometimes overpreparing is worse than simply going in as yourself and speaking off the cuff.

    Liked by 1 person

  6. I hope it goes well tomorrow. This seems like the kind of thing were less prepared might actually be more to your advantage. They should be asking questions to try to elicit as many symptoms as possible, and your reality is probably more effective than trying to present it in a certain way.

    Liked by 1 person

  7. I honestly didn’t know what to expect when I went to my first of three appointments that were my assessment. I don’t know how I could have prepared. My stress was about the long bus trip to an office park in a neighboring city that I hadn’t visited in a while. I got there way too early, of course, but this was before we went into COVID lockdown, so I was able to kill time in a coffee shop with a lovely view of a duck pond where some ducks were courting! By the time I got to the appointment, I was thinking about ducks and not the assessment — and it went well. Usually I overthink things — but the ducks took my mind off it 🦆

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