Asperger’s Part 4 – Getting assessed

I got assessed today. I’ve managed to get from first GP appointment to full assessment in just over 6 months, which by all accounts seems to be pretty good going.

I have fretted about the assessment A LOT. The letter said the assessment would take around 3 hours, but I had no idea what form the assessment would take – interviews, tests, with my mum in the room, without my mum in the room – no idea. This is a bad thing for me: I like to know what’s coming and I had never had a psychiatric assessment before, which was pretty unsettling in itself.

On top of that, I was worried that I would get told at the end of it either:
a.) You don’t have Asperger’s. You’re just a weirdo, and moreover, you’re making a fuss out of nothing. Get a grip. (Note: this would never happen. Just my own personal worry!)

b.) You don’t have Asperger’s. You probably have something else. You know this stressful assessment process? You’re going to have to go through it all again for a condition you’re not even familiar with. Enjoy.

Now in asking around, what I have learned is that no two assessment centres are the same. Every place has a different way of approaching the assessment. So if you’re hoping to get the definitive answer on what your own assessment will be like – THIS ISN’T IT. This is just what my assessment was like, at the Cambridge Lifespan Asperger Syndrome Service. It might be different for you even if you get assessed at the same place. If you are worried, call or write to the centre. If you get fobbed off by a receptionist, don’t stand for it, insist on having one of the clinicians write back to you. I brought this up at my assessment and this is what the psychiatrist recommended. You will not be considered rude for doing so.

The assessment was actually a three hour interview with me and my mum. That sounds really intimidating doesn’t it? It wasn’t. The lady was friendly, direct and approachable. She respected my need to take time to answer questions. I got a bit stressed and upset partway through – she just gave me breathing time to stop before carrying on.

The interview essentially went through the DSM criteria (You can see a full list of them on my earlier post here). She asked questions about my behaviour now, and as a child in relation to those main criteria. Look at the criteria, consider ways in which they relate to you.  If you’re worried you don’t know – don’t worry, your clinician will question you in ways that allow them to find out what they need to know. The onus is on them, not you – this advice is only if you wish to feel a little more prepared for what you may be asked. The only thing that I do recommend you consider (and to be honest, *should* have done if you’re putting yourself forward for this) – you will get asked what has brought you there to be assessed as an adult. You’ll probably have thought about this a lot and you’ll want to consider what your answer will be. Knowing a good answer to the first question made me a lot more relaxed about the rest of it.

I don’t know if other centres do it differently, but mine gave me a diagnosis verbally at the end. She gave a description of what brought her to the conclusion, and some advice in the short term for things that might help with meltdowns and panic attacks. I’ll get a written report in a couple of weeks and so will my GP.

The conclusion of all this?

I am that unusual beast, the woman with Asperger’s. I am variously described as representing less than 1 in 4 of diagnosed Aspies, or as close to a 1:1.5 ratio. What does seem fairly certain is that the medical community is getting better and better at recognising the differences between males and females with Asperger’s, and are getting better at spotting it in women. Our symptoms present a little differently, and we may hide our social difficulties more easily, and may be better behaved as children than our male counterparts, but we exist.

Next steps

This point might be the end of the line for some people, but I see the assessment as a means to an end. In my case, the diagnostic centre does not offer ongoing care, only a diagnosis. So to get help with panic, anxiety and meltdowns I need to go back to my GP (yes, the one who said I couldn’t have Asperger’s because I looked ‘pretty normal’… may try and swap GP). From there I should be connected up to any relevant services to help me. As and when there is anything to report on what those services might be and what they are like, I’ll write it up on here. I really have no idea yet.

One more thing

An assessment will not change who I am. It does not excuse bad behaviour. It does not give me free licence to act like a jerk and say it’s because I am autistic. It is a tool. It is a means to politely ask for help and resources when you might not otherwise be able to get them. It is a means to ask for assistance and understanding when you are acting in a way that other people think of as weird or irrational. It is a way to explain and understand yourself. It is a way to get help. It is not a quick fix, or a magic wand either – from here, this is going to require some hard work and re-conditioning and that all has to come from me. If help is what you want – don’t expect it to be easy.

Then again, if you met me, you probably wouldn’t pick me out as terribly different (my friends might disagree). I am geeky, over-talkative, sometimes a little insensitive, but I am also caring, and perfectly capable of living independently. Asperger’s does not pick me out as too much weirder than your average nerd. Most of what happens with Asperger’s is on the inside – it’s how *I* feel, and how *I* understand the world, not how I present to the rest of it (although that’s part of it). It is a spectrum, and lots of people are much further along it than me. They may be more noticeably ‘different’. The only point I wish to make here is that not everyone you meet with Asperger’s is like Rain Man. Most of us are just geeks, and most of us just want life to be a little easier.

So that’s it – Asperger’s assessment from start to finish. Feel free to ask any questions in the comments, I’m happy to (try to) answer anything I can help with.

Part 1: On Asperger’s Syndrome and Getting a Diagnosis

Part 2: Getting a GP Appointment

Part 3: Waiting… lots of waiting

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3 thoughts on “Asperger’s Part 4 – Getting assessed

  1. I don’t know whether this will help, but having heard Amanda’s thirst for knowledge about what today would entail, I thought I would add how it went from my point of view. I have supported Amanda throughout, but have not (until today) understood how a late diagnosis would help. I was concerned that my beautiful daughter would just receive a label. I echo Amanda’s words of caution about how other assessors or centres work, but I found this morning insightful, helpful and very reassuring. We were interviewed in turns so the emphasis was switched between us, giving us a chance to think/reflect and listen. I realise that, through a series of fortunate events and/or fantastic primary school teachers, we have worked around Amanda’s needs. She also demonstrates many family traits and so we never thought of her having “a condition”. We did know (and still do) that she is special – maybe even a little different. Today helped me understand how we missed the obvious and alleviated my own guilt. I now realise that Amanda needed confirmation of a diagnosis, but remains my gorgeous, quirky daughter. Please excuse bad spelling and grammar in this post!

  2. Hey 🙂
    How does it feel to have the diagnosis? I remember this time last year I had my assessment with my mother too. I remember having an image in my head that my life would feel easier when I get my answers etc. But in all honesty I’m finding it very hard. I had a similar response from my idiot GP when I mentioned Aspergers she blurted out ‘Did you take your GCSEs?’ I replied.. ‘Ermm yes?’ She replied ‘Well you don’t have it then’ so at this point I’m in tears with anger (I can’t stand her anyway) & tell her she doesn’t have a clue about Aspergers & she decides to refer me anyway. I find it quite bad that they have no real knowledge about Aspergers & how it differs in males & females & aspies altogether!
    When I got diagnosed the woman also spotted signs of ADHD (not extreme just my anger & short attention span side of it) & she said I am entitled to have Ritalin to ‘calm me down’ if I wish. Which I already knew I wasn’t going near that.
    So I go back to my GP having to ask for therapy myself. The woman that diagnosed me mentioned a therapist in particular that dealt with Autism. But did I get him? No I get some annoying woman that doesn’t understand me at all. I was most annoyed at the fact my doctor didn’t seem to care about me being diagnosed he didn’t ask about it the only thing he said was ‘OK would you like some Ritalin then yes?’ Ermm no I do not! It makes me angry that all they want is the money & they don’t really care about our health.

    If you would like to talk more I’m always here 🙂 I can understand how weird it feels to live life without the wondering thoughts constantly in the back of your head! You can be free! 🙂

    Hope to hear from you..
    Maria

    • My GP said that after ten minutes of talking to me she couldn’t say whether or not I had AS (No – that’s why I’m asking for an assessment with a specialist) but that it DID look like I had social anxiety and depression (so you can’t tell that I have AS, but you can tell I have anxiety and depression??) and that I could just walk away that day with a prescription for something to calm me down and some antidepressants. I found it pretty scary that I had to really argue my case for a diagnostic path that would require no meds, just some counselling and a bit of work, but that my GP was so keen to pack me full of drugs I didn’t actually need. I think as you say, it just comes down to ignorance of what Asperger’s/autism is. I certainly felt as though I knew more than my GP.

      I am waiting to see what happens from here, but I explained to the psychologist that my GP was a bit of a shower, and she said that she would make some specific recommendations for therapy in my written report – I’ve already decided that I will be taking no crap from my GP if they want to suggest they know better than the qualified psychologist 😉 I haven’t started yet, but I expect that as you say, there’s going to be some hard work involved before the payoff of this process.

      I actually feel pretty good about the diagnosis. It doesn’t *change* who I am, but it provides a lot of much-needed explanations of my behaviour and how my brain works. It has been complicated to explain to my family – I hadn’t appreciated, but they all saw AS as something which was invariably horrifyingly debilitating. Their responses have ranged from supportive, through disbelief (e.g. ‘no, you’re not as weird as Rain Man, you can’t have Asperger’s’) to understanding, but I think it will take a while for it to all sink in. The psychologist helped a lot in that regard, and helped explain it to my mum, who is in turn educating my siblings and grandparents!

      There is a lot to be desired of the NHS, and although I feel quite critical of my GP – I had 3 1/2 hours with a very highly qualified specialist and was very well treated, and I didn’t have to add the worry of cost to the whole process. Overall, I feel much more calm and in control after the diagnosis than I was before. ‘Free’ is definitely how it feels right now 🙂

      Amanda

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