Thoughts on diagnosis - a thread in the early morning (there's a novelty). Please share widely. #autistic #AllAutistics #autism /1
One of the most frequently asked questions I see on here and elsewhere is whether a diagnosis of #autism is worth chasing, if you suspect you or someone else is #autistic. I think it is, for reasons I'll elucidate below. /2
Many, possibly even most diagnoses begin with a form of self-diagnosis (or dx for short). This is a necessary step with an invisible disability like #autism, as its extremely subtle in many cases and the struggle may not be outwardly apparent. /3
Self-diagnosis, based on self knowledge and a decent grounding in the basics of what #autism is (sans the myths that many of us are trying to debunk) is extremely important and meaningful, and all diagnosticians should take it very seriously. /4
Self-dx can be stressful, as its easy to be buffeted by self-doubt and a fear you're imagining it, or making it up, or seeking attention - irony is, if you *are* #autistic, I think these feelings are possibly more likely to occur? /5
So if this is where you stop, no matter how convinced you are that you're #autistic, you're likely to suffer terrible doubts and this will affect you quite badly. Hence why it's probably a good idea to be 'formally' diagnosed - to allow peace of mind. /6
If you get a formal dx, you will be able to move forward with the next step of acceptance and further understanding without being bombarded by saucy doubts and fears, as Macbeth would probably put it. /7
It will also unlock a range of potential benefits external to you. For example, in the UK at least you can register as disabled at work and demand reasonable adjustments. This is one of the game changers for me, to be honest. /8 #autism #AllAutistics
In my job (Teaching English with Overexaggerated Hand Gestures) I now get special light filters, a fan on my desk, extra storage space, more sick allowance, no requirement for phoning parents (email instead) etc etc etc. This wouldn't happen without dx. /9 #autism #AllAutistics
But there's even more than this. Being diagnosed is self-vindication and can be, if the process is kind and well-managed by the professional, a good expression of self-assertion that can be very good for the mental health, I think. /10 #autism #AllAutistics
All of this is heavily dependent on the process of diagnosis though. And there are some horror stories out there (see some replies to my earlier tweet to doctors). This is so unfair it makes me want to scream. /11 #autism #AllAutistics
Many GPs, who act as gatekeepers in a very real sense, have extremely old fashioned or stereotyped views of #autism. This means you may have to face the unbelievable stress of arguing your case. It shouldn't be like this, but it is. /12
But there are ways to get through this. Firstly, you could take a friendly person along to help you. They can be there for support or they can actively argue your case for you. /13 #autism #AllAutistics
Secondly, go in there confident that you probably know more about #autism than they do. This is not to disparage docs, but they need a very wide knowledge of medicine and with some conditions this may simply be a very superficial knowledge, whereas you've researched for years! 14
Thirdly, in the appointment make it clear if your suspected #autism is affecting your mental health, ie you also have depression or anxiety. This could hasten your journey if you are quite ill in that respect. /15
Fourthly, don't allow yourself to be dismissed easily. This is easier said than done, but if they reject your suggestion for reasons that don't appear to be reasonable, then complain, get a second opinion, inform the lead doctor at your surgery. /16
I'm not saying you must get a dx even if you're not actually #autistic, that's silly. I'm saying that your belief you may be autistic is valid and important. /17
I never got round to finishing this thread! Here goes. Ultimately, we need to all see the validity of self - dx as a starting point, and one we cannot discount. /18
The chances of being diagnosed without already believing yourself to most likely be #autistic are pretty low as it's not the kind of thing that'll get spotted routinely. /19
People at this point need as much support as they can get, so let's offer that as a community. As for seeking official diagnosis, there are currently too many barriers and this needs to change. /20
I'm fuelled by coffee, basically, so if you'd like to help me with that, that'd be really lovely.
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