I'm new, go easy on me.
So yesterday I finally bit the bullet and went to the doctors to ask for a referral for a diagnosis. I've never felt normal, never felt I fitted in, always struggled around people. Somehow because I was academically good I got shoved down the office work route. Offices are my personal hell. With people everyday, small talk, being in sight and worst of all PHONES. Yesterday was a bad day for me there were a lot of people off because of the weather. This meant less people answering the phones which meant I was expected to answer a few. Cue me doing no actual work due to the debilitating fear of the phone ringing and me having to answer it. A few trips to the toilet to calm myself down and cry a little (but not too often because that would look weird). I logged on to my doctor’s website and booked an appointment for after work.
At the appointment I said that I wanted a referral. The lady seemed almost dismissive (“it’s not that simple”). She asked me why I thought I was autistic. I stuttered, choked and mumbled before handing her the 3 sheets of a4 I’d typed knowing full well that I wouldn’t be able to speak. On the sheets I’d said that I want to get a diagnosis so that I would know I’m not just ‘weird’ that there’s a reason for me being like I am, so that I could tell my employers (by email obviously, probably on a day off) “this is why I struggle so much, can you put anything in place to help?”, so that I can maybe get support if there is any. That didn’t seem to be good enough for her. She said she’d write the referral letter as persuasive as she could but because I function (i.e. I’m married and hold down a job) that they wouldn’t see any clinical benefit in a diagnosis and would probably refuse to see me. My head was screaming “I barely function, every day is hell, I spend the days wanting to cry and the nights stressed about going back the next day and they won’t see me just because I haven’t given up yet?! So they’d rather wait until it gets too much for me to think about helping?!”. My mouth just let out an involuntary scoff at being told I function. Seriously, is there any wonder suicide rates are so high (NB I am not suicidal, I feel a bit wrong for mentioning that, sorry)?
Anyway. She’s sent the referral to the hospital mental health team. My question is, is that the right place to refer me to? Does anybody know how long it usually takes to hear from them?
Second question is, if they do refuse to see me as she thinks they will, what can I do about it?
I am in a very similar position.
Offices are also my personal hell. With people everyday, small talk, being in sight and worst of all PHONES.
I am also struggling and barely function, every day is hell.
I feel that I am in the same situation. It looks like I function but I am extremely unhappy. Feel miserable. My mental and physical health suffers all the time.
I think I might be eligible for PIP and ESA.
When I first went to my GP (the first person I contacted regarding my growing suspicion that I might have Asperger's) I was so nervous and unsure of where to start that my 'mask' failed and I was a jumbled mess.
The GP asked why I thought I might have Asperger's and I mumbled "Because I think I'm weird." The GP gave me a look I interpreted as being 'cold' (but Hey, apparently de-coding looks isn't an Aspie's strong point so what do i know) and said "People with Asperger's are not "weird", they just think differently". At the time I thought she was dismissing my concerns but she actually, after I left, got things moving really quickly for me to be assessed! Now, I choose to see that GP because I feel she really does understand AS and doesn't have stereotypical views about it (as I apparently did before I was diagnosed and learned much more about it).
Now, I still think I'm sometimes a little bit 'weird' but I think those are the best bits of me to be honest. The bits behind the mask. The best thing for me about being diagnosed has been a growing acceptance of myself combined with a growing amazement at the sheer number of (now) obvious traits I have.The diagnosis has sort of given me 'permission' (for want of a better word) to be myself and to like myself.
I am not in the UK but if I was and if I did wish to seek a diagnosis I would ask them to look at my medical notes from childhood, as I was sent to a child psychiatrist. One doctor was careless and shuffled my notes about in a way so I could see what was said and it read: 'She may be prepsychotic, she certainly reminds me of other prepsychotic children I have seen.' I saw something else that referred to the ''stilted' drawings I did as a child.
This was all in the 60's and early 70's by the way.
I knew there were an awful lot of things I was not being told.
I suppose I am still trying to get to the bottom of what that was all about, secrets like that tend to poison the atmosphere.
But that is my experience. If you were ever referred as a child you might have some luck there in the case of uncomprehending GP's.
It sounds like she was being as sensitive as she could be and that she was really trying to help you. They have to ask that question, what difference will a diagnosis make to you. And she has to have enough solid evidence to be able to approach the autism team. I sometimes work for the NHS in mental health teams and it’s an on going battle between the mental health teams and the gp’s. It’s almost like it’s a game ~ let’s see how many referrals we can refuse today! If there is anything missing from the form, even something like a middle name, they won’t accept the referral. The gp’s get slated and they’re only trying to help their patients but there’s no slack. It also gives the mental health/autism teams etc a bit of breathing space. They are so overrun with work, that if they can hold off accepting the referral for a few more days, their workers can have more time to work with their current clients who also desperately need their help.
Maybe you could get an advocate to speak on your behalf and find out what has happened to your appointment. I need my support worker and advocates to speak on my behalf to these kind of ‘offical’ people as I usually take what they’re saying the wrong way and become unable to control my emotions. I often, if not always, end up crying and being unable to speak so now, I just let others speak on my behalf when I think it could cause me to meltdown.
Referrals etc can get overlooked sometimes as those who shout loudest, so to speak, sometimes throws the worker out and work can get lost. It’s not always easy to keep on top of things and not everyone has a reliable system in place to do what they can to minimise this risk.
Wow. I have now deleted my post. :((((