All my life I have been a little 'off'', didn't feel like I fit anywhere had crazy little quirks that would make me stand out from the crowd and I had accepted that perhaps I was eccentric. Most of the time it didn't get me down, I had learned how to behave, what to do etc, but with more than a few slip-ups. Anyway, at the beginning of the year, I watched a documentary on Autism and I burst into tears because all of my 'eccentricities' were being described by people with ASD, there wasn't any part of it that I couldn't relate to. So I started to look into it further and realised that my 'struggles/quirks' could well mean that I have ASD, in fact, I am 99.9% sure. After I had accepted this, and felt slightly relieved I couldn't decide whether I wanted to pursue a diagnosis or whether I would be happy enough to be 'self-diagnosed'. A few years ago I was in the hospital and I struggled to communicate with the staff, to the point that I was being given antibiotics I was allergic to, so I decided that it would be useful to get a diagnosis, just as an 'alert' to others that I have ASD, not as a label to define myself. This coupled with the fact that I have no family and few friends, it's just me and my partner, and I could find myself in a vulnerable situation as I get older. A few weeks ago I went to see my GP, I took with me a list of everything, and I struggled to communicate with him, I couldn't find my words and he automatically assumed it was Social Anxiety Disorder - which I know for a fact it is not. As I had assumed he offered me tablets - and at that point, I walked out of the room and decided to write him a letter, accompanying an AQ10 form which scored an 8/10 - I detailed as much as I could without going overboard and I was invited to meet the nurse.
When I went for the appointment with the nurse she was very nice and told me the reason I was meeting with her was that she had more time and I could explain everything to her, which I did. During the appointment, I told her how physically and mentally exhausting social interaction can be, and I often 'crash' afterward. This has been picked up on and the surgery want me to have blood tests to see if my B12 levels are low. Even if they are it doesn't make everything else OK - the inability to socialise 'properly', the sensory overloads, the fear of invaded personal space, the lack of ability to be 'fluid' in my plans, and the meltdowns when I cant cope. I don't know what to do, I have no fight in me, I am exhausted, it has been 36 years that I have been like this, it takes all my strength to go to the appointment and explain - because for some reason I speak and even though in my ears it sounds like English, to everyone else its a different language! I just want to know if I can get a referral, I have trawled the internet for advice and cannot find anything conclusive - so am reaching out to you guys for some advice. I haven't got the resolve to jump through numerous hoops to be 'undiagnosed' with everything else. Should I speak to my local NAS? Can doctors refuse referral requests? What do I do - I just want to run away and not deal with it but my gut tells me I need this diagnosis. Since the self-diagnosis I have felt more confident in dealing with the world around me and it would help if I had an official diagnosis so that if I am in hospital again they would be aware too. Please can someone help and give me some advice? Thank you so much in advance
It makes me so angry to read this. I understand your frustration. With me, it wasn't so much a stubborn GP, but completely unhelpful mental health services. I got told by a psychiatrist that I couldn't be autistic because I didn't flap my hands or rock in my chair. I got palmed off with all sorts of things. I was told that drinking was the cause of my depressions - even though I didn't drink much at the time. Maybe a couple of bottles of wine a week - less, probably, than most average drinkers. But they referred me to an alcohol unit nevertheless, where I was mixing with hardened alcoholics. Crazy. I got given pills to make me feel better. No one seemed to listen.
I only started to get somewhere when, following a suicidal breakdown, I saw a therapist. Over the weeks, she put the pieces together and recommended a referral to specialist autism services. My GP at the time - out of her depth on the subject - made this referral. And two years later, I had my diagnosis - at age 56.
You need to be insistent with your GP - something that isn't always easy, of course, for people like us. Keep on at them. Demand a referral. It's crazy - I mean, would they say 'no' to you if you went to them with a clear and obvious physical condition? But no... they always seem to go down this alternative route first. Whatever you say it is, they'll say it isn't! Yet very few GPs, in my experience, have any proper knowledge of mental health or neurological conditions.
Do you have a therapist who could perhaps back you up on it? Would going for a private diagnosis be feasible for you?
Sorry if I'm not very helpful. But I know how you must be feeling.
Check out this information, if you haven't already, to see if there's anything helpful:
All about diagnosis
my experience was that after years of thinking I maybe, another bout of being bullied finally led me to a counsellor that said “have you ever thought you are on the Spectrum?” She gave me the following advice...
1. Speak to your GP and request a referral for ASD under the NICE Guidelines
2. Advise your GP what your score is on the online ASD test
3. I also put together a list under different categories (Childhood, family, work etc.) that referred to why I thought I was on the Spectrum.
I have been referred for an assessment, although like Martian Tom, I am of older years, having a diagnosis will confirm why life has always been hard for me.
I am now also about to start studying for a Level 2 in Autism. This is a free on-line course as long as you fulfil the requirements e.g. timeframe. This will assist me in knowing more about myself while awaiting the diagnosis, so may help you too. In addition, seek out Autism organisations that maybe able to help you. The main thing is to feel supported and not to ever be alone in this journey, even on-line such as this community can help you.
Good Luck and keep us posted on how you get on.
NAS37913 said:I am now also about to start studying for a Level 2 in Autism
I did that course. It's okay... but they don't give you very long to do it, and there's a lot to take in. I got an extension in the end and still only just managed it. There wasn't really time to assimilate the information. I'd have preferred to have had at least 6 months. But we all learn at a different pace, and you may find it not such a problem
Hi Martian Tom
Thank you for your reply and also sharing your story, I hope that you are feeling much better now that you have had your diagnosis - its absolutely crazy that you were placed in a unit like that and then forced down a road that you knew wasn't right! I completely agree that GP's have very little knowledge when it comes to mental health and neurological conditions - I mentioned that I had studied psychology and I knew that the diagnosis of Social Anxiety Disorder was completely incorrect - but then he told me that as I was too 'close' to it perhaps I couldn't see it! That was after he had suggested that applying a label might not be helpful - in fact what he meant was applying a label that he didn't stick wasn't helpful! When he offered me tablets that was the final straw - considering I know I don't have anything that would be successfully treated with tablets. He also asked me if I knew what 'letting the cat out of the bag meant' - and because at the age of 36 I had learned what that meant that automatically suggested I wasn't on the spectrum. He also said that having empathy meant I couldn't have ASD....I tried so hard to explain and he just switched off. You are absolutely correct in saying that I find it hard to be insistent - do you often find that you take the route of least resistance? I have contacted a private clinic for an assessment cost today but have not heard anything back yet, I have limited resources so its really hard. I haven't got a therapist but if I can get to speak to a mental health professional then that may be a good next step. Thank you so much for taking the time to respond and I will keep you updated!
Hi there, thank you so much for replying. When I went to the initial appointment I took in pages of information with me to give examples of things, but he was so 'not listening' that I closed off and couldn't go over them and he took them from me and read them - he decided it would be a good idea to pull his chair right up next to me and read them , which caused me to freak out even more! After the appointment I sent him the letter with the AQ10 form (I scored an 8) and detailed in the letter why I had answered the way I had, with examples. That was when I was asked to see the nurse and I went in to see her and gave her example after example. Because I mentioned how hard it was to socially interact and how exhausted I am afterwards it was mentioned that I should have a blood test to check my B12, she called me and told me and I am just at that point where I want to give up but know that I shouldn't that I just compliantly agreed. Thank you for the advice on the NICE guidelines - I will take a look at those. I am 36 and have struggled so much over the years and each time something has happened I have had to pick myself up again and start again - and blame myself for being weak etc - and now it all makes sense, and you are absolutely right in saying that it will confirm why life has been hard and I wont feel as much of a 'weirdo'. I haven't heard about the level 2 in autism, I will certainly look at that, anything to help myself. You say about organisations and I wondered whether my local NAS group would be a good place to ask? Thank you so much for your advice and guidance and support. I will keep you posted and thank you so much again :)
I feel so much for you. I completely understand how difficult and frustrating this can be. I also have a lot of trouble communicating. It might be worth trying to ask for an referral again, and try to be clear that you would like to be referred for a formal diagnostic assessment. It might be a good idea to look up the local NHS services that does the assessment and tell the GP you would like to be referred to that clinic. You can read about the NICE guidelines here: http://www.autism.org.uk/about/diagnosis/adults.aspx Wish you all the best, and I hope things will go more smoothly next time. Don't give up.
NAS37908 said:He also said that having empathy meant I couldn't have ASD....
Rubbish, rubbish, rubbish. It just shows how badly it's misunderstood - and how badly he wants to cling onto his self-esteem by not being bested by a patient. He really doesn't know what he's talking about. He's just sucking up the usual nonsense. I work in care. AND I have autism. What does that say? It's misunderstanding, pure and simple. I can identify with the people I work with because I understand what it's like to be cast aside, marginalised, treated as if I'm an idiot who doesn't know what he's talking about. Plus, caring for people doesn't necessarily equate to caring about them. What isn't properly understood is that we usually have to deal with a lot of trauma in our lives. Doing that enables us to confront trauma in a way that may seem cold to others. That isn't the same as saying we're unempathetic. Your GP is an idiot. If you can't persuade him, the best thing to do is to change him. But in the meantime, please feel free to share my thoughts with him!
Also take a look at the Royal College of General Practitioners' web page 'Autistic Spectrum Disorder Toolkit':http://www.rcgp.org.uk/clinical-and-research/resources/toolkits/asd-toolkit.aspx