Not necessarily the most challenging bit of the process (depending on the surliness of your GP receptionist I suppose) but nonetheless an important bit. If you’re anything like me, dear reader, then going into the unknown without an armful of notes and preparation is unthinkable. In fact, it probably is best to go prepared into a consultation where instead of turning up with a set of symptoms and asking the GP what they reckon to it, you are turning up asking for a referral. So what do you prepare?
You at your worst, you at your best
In getting a diagnosis for the nephew, my sister in law and her husband felt as though they were really over emphasising their son’s difficult behaviour in order to get across just how bad a bad day could be. This is in itself sort of the point – how ‘well’ you are is very relative but how unmanageable your bad days can be is almost more important. I can act like a normal human being and deal with people and busy supermarkets on a good day. But the fact that this is a ‘good’ day suggests that maybe this is a different measure of ‘good’ to everyone else. It takes effort and is actually tiring for me to keep my cool in a crowded environment. Hence it needs to be a good day for me to manage it. This is standard for other people. So a bad day is very bad. It involves irrational freak-outs, panic attacks, tears before tea-time and a lot of stress to do things which I feel are normal day-to-day activities for other people.
However, I understand that biting people at Sainsbury’s is wrong, no matter how satisfying, so I attempt to refrain from freak outs where possible. So in describing my day-to-day behaviour to a GP, I am an articulate (reasonably) intelligent young woman who manages not to bite people. I don’t want to describe myself as a nutter, but nonetheless, it’s the fact that I have these irrational freak-outs which is going to be important in getting a diagnosis, or an explanation of the strain it takes to be ‘normal’. So although hamming it up doesn’t come recommended, being honest and open about what you find challenging is ok. It’s important not to feel ashamed or ungrateful or whatever else – just tell it as it is.
My nephew’s parentals found it easiest to keep a diary of their son’s difficult behaviour day by day (so ‘as it was happening’ as possible) so that they had something as close to evidence to show as possible in order to stop it appearing like rambling. I’m also taking this approach to give some kind of empirical back up to my statement.
Call in reinforcements
I’m taking my husband to this appointment. He’s the only neurotypical member of the family, and he sees me at my worst and at my best, and is very supportive. He can ratify what I have to say, and he can tell me when he thinks I’m exaggerating what he thinks was actually a minor problem. He is my perspective and my backup, and we can discuss the outcome afterwards having both sat through the same conversation. So if it helps, take someone who knows you well.
Decide why you believe you are worth assessing
You obviously think you are worth assessing if you are considering it, so try to bring this into a few key points or behaviours. The NAS recommended to me trying to use one or two from each category of the DSM-IV (a diagnostic criteria for Asperger’s. You can read it in full here on this post). This condenses what you are talking about into some recognisable criteria. I’ll probably try and have a few spare in case some are contested.
Even take a basic Autism Quotient assessment. It’s not a diagnosis but a high score definitely suggests you are worth assessing. A low score doesn’t mean you’re not worth assessing at all, it is just an indicator. But for me, a high AQ score leaves me feeling more assured going into an appointment. I gave a link to an AQ test in the post linked above if you’re interested.
What would a diagnosis mean to you?
This is not such a silly question at all. My father in law is almost certainly AS. It runs in the family. Nonetheless, feeling sure of a diagnosis is enough for Pa and he doesn’t feel the need to go through the stress of a diagnostic procedure. Perhaps because he was older he felt less like he had something to prove/gain by getting a diagnosis, so this has always been enough for him. For me, I think I have a lot to gain by a diagnosis.
It adds a narrative and an explanation to why I have always been weird. It connects me to a group of people with a similar set of problems. It gives me access to adequate health care and advice.
For some people adequate care and advice is self diagnosis. For others, it’s just knowing for sure something you’d suspected that can be amalgamated into your personal identity. For others, this may involve counselling or extended advice and support. For me, it’s largely a case of justification, and probably also advice on dealing with freak-outs.
It’s actually important to me as well that things which I had only ever really considered as failings may now be re-evaluated as successes. Yes, normal people find Sainsbury’s at worst, a chore, at best, a trip to buy some shopping. For me, it can represent anything from an evening of stress, to a full on panic attack. But if it were expected of me that I would find that a challenge, to come out ready to fight another day is a small victory rather than a non-event. To have a panic attack is no longer a failure, or an abnormal thing to do. It’s just normal for Asperger’s.
You may be asked to justify why you’re asking for a diagnosis, so this is important to bear in mind even if you have the most clear cut of cases.
So prepare as much as makes you feel comfortable, relaxed, and in control of the situation. Go into the consultation with clear aims, and ask for justification if you don’t feel satisfied with the conclusions at the end.
Above all, I’ll let you all know how it went after Friday.
Also, contact the NAS if you want any further advice – they can give you all manner of stuff for both you, and your GP and are full-on heroes.