Why Get Diagnosed?

Hi Boggart.

I don't know what other people are thinking, but for my part you've ticked, very strongly, some of the most indicative traits. You might think you're rambling, but what I'm reading is someone suffering in much the same ways that I ever did. The confusion, the 'lost' feeling, the frustration of not being able to make your mind up about anything - you might not understand how or why, but simply the way you write, let alone the things you write about, tell me a lot.

I think it's clear that you should be asessed from an AS point of view. I might have something better to say on my nest point, later today, but please let me say this.

I iunderstand completely how you feel about your doctor. I finally got a GP that made me feel the same way. We developed a lovely doctor/patient relationship, and I finally felt able to be more trusting of her and started to open up a bit, and yet every time I saw her I was apologising for taking her time up with my minor issues.

She is delighted that I got my diagnosis. Her concern was entirely for me, she always reassured me that 'the most important patient I'll see today is the one in front of [me}', and it was her who rejected my long-standing diagnosis of Bipolar (a common misdiagnosis for us) and initiated the reassessment.

This 'fear' of spoiling a relationship with your doctor is also common, and yet when it comes to people appraoching their doctor with this sort of enquiry, the younger ones seem to be responding in increasingly better ways, so perhaps their training is improving in these particular areas. Whatever the reason, it seems to be working, which is only right and proper. Getting AS people properly diagnosed, instead of leaving them to wallow in a sea of confusion, is very important.

Don't forget that there are other conditions that you could be suffering from too. Even having a couple of 'traits' might explain much both for you and your medical professionals, even if you don't tick all the boxes. We have some issues with the boxes they tick, but that's not relevant right now, it's part of the ongoing debate. We have to work with what we've got, not what we'd like!

I think that there's acceptance in the medical community that our overall wellness is linked to how we are at any particular time. Since I got my diagnosis, I actually 'easte' a lot less of her time. I can't explain this to you without a ramble, so please try to accept that this is so on my word alone.

Of course you can't see any benefit in getting a diagnosis, you have no idea what it might mean to you. Most people suffer such multiple symptoms, mental and physical, that it's a very tangled situation to unravel. For me, the key that started the unravelling process was my diagnosis, so much has fallen firmly from the 'unkown, unfathomable' section of my head into the 'ah, there's the real rpoblem' section, and I know myself better than I have in my life.

Please, even if you just show your doctor what you and the rest of us have written on here, do it. Lots of people go 'shy' in front of their doctor, it goes with AS to do that, and we often find that we've forgotten things, or downplay them, when we get there. I know I've walked out of an appointment and then berated myself for not saying what I really wanted to say, but it really is a huge thing.

So yes, in my opinion you've got a real issue there that's enough to start the dialogue with your doctor, and she won't be negative about it. We don't like to pass such opinions because we aren't qualified to, but for my part I'd say there's definitley enough there for you to take to your doctor and ask for a proper diagniosis. In the meantime, we're glad that you're on here and talking to us, and I only hope that it's helping you to have our support. Trust me, if you're on the spectrum, we all understand very well what you're going through right now because you're telling us, even if you don't understand how.

Drat and balls. I wrote a long reply and then it told me I wasn't logged in and lost it. -_- 

In short, I was saying that I think the agoraphobia is more to do with the combination of nausea and phobia about that, than fear of people per-se- I do worry that they'll be mean to me if they see me throwing up, and because moving around too much / travelling generally increases my nausea and pain and I don't LIKE throwing up, so I'm highly motivated to avoid anything that makes it more likely. I think the only sort-of autistic thing in there is that I cannot get over the assumption that other people will react with the same abject horror that I do to seeing someone vomiting, even though I know academically that 90% of people just aren't that bothered, I can't understand it. 

On persuing it more aggressively / legal rights etc, I'm not in the same position as people who just have bad GPs at all, mine is lovely, and the problem is I don't WANT to fight her or go over her head- and I'm not even sure she's wrong- she has to think of everyone, after all, and allocate resources and funding to those most in need, whereas I only have to think of me and what I want / need. I think the problem is.. I find it weird to think that I wouldn't benefit from diagnosis- that it just isn't important. I feel like I'm missing something, but until I know exactly what it is, and I can go to her and say "I need diagnosis because X" I don't even feel I have a very strong case. 

Re persuing it though the mental health people- as far as I understand, the assessors are now done with me- I won't see them again, and I'll have no contact until whoever is going to do CBT to me gets in touch- long waiting list. I've already been on it quite a few months. I'll probably mention it to them when I meet them, anyway- just to see if they see any of the traits in me- it'd be really interesting. Boyfriend does- in fact he's the one who keeps pushing it- I came accross aspergers ages ago and thought oh, that sounds a lot like me, but I'm coping so who cares? And forgot about it, but boyfriend recently discovered it, and he says it'd explain a lot, and make it easier to be patient etc with my slightly less.. charming traits! Then again, that could be bad- I do think people should be berated for bad behaviour, even if there is a reason for it. I don't want an excuse to be a brat... but I do rather hate it when he gets angry at me for being unreasonable and I'm TRYING but I'm just so irritatingly illogically fixated. It bothers ME so I understand totally why it's annoying for him. That would be a good place for the patience card. Ahhh rambling. Erm.. what else? Oh, just that I'd really like other peoples' opinion on whether I sound like a good match for it. Hopefully I can at least get a bit of that here. 

There is some useful stuff about the law and guidelines on this page www.autism.org.uk/.../the-process.aspx

I think it might still be useful to discuss this with your MH contacts - they should be aware of the difficulty that you might have and they should be able to help you get the referral.

A lot of people with autism struggle with pursuing diagnosis as, like you, we are often good at dropping stuff because things to be more trouble than they are worth. There are lots of threads on this forum started by people in your position who have been given the brush off by their GP.

Just picking up on your mention of empathy. Empathy definitely is a problem for people with autism. We are really bad at understanding facial and non verbal signals that non-autistic people use to understand other peoples feelings. Empathy (identifying peoples feelings) is different from sympathy (feeling for other peoples situations) but if you can't do empathy then it's harder to develop sympathy so I think a lot of people with autism struggle with both empathy and sympathy.

I think the autism diagnosis may be more useful than you think. I think that the autism may be having a bigger impact on your life than you or your GP realise.

Your agoraphobia may be more to do with fear of meeting people outside than fear of simply being outside. The definition includes both fear of open and public spaces. Many people with autism become reclusive because they find meeting people such hard work.

It sounds as though the mental health service may have referred it back to the GP because the GP has the budget for treatment and referrals. The GP is simply wrong to say that there aren't facilities for adult diagnosis. There are guidelines and obligations specific to adult autism that are quite clear about this. Perhaps you could discuss this with the MH team who may be able to put the GP straight on this question. The specialists will be able to advise and help you with this.

Hmm... it seems to work a bit funny- like, I *think* they're all different departments. So m/health referred me for CBT for the anxiety, and also gave me the autism thing to fill in and take back to my GP. Unless I tell the CBT therapist about the autism stuff I don't think they'll even know about it. Whether or not the therapy will be appropriate I'm not sure, but it can't hurt. 

I think from what you're saying perhaps the best answer is just to drop it. None of the things you listed are really things that I need, unless there's some form of autism-tailored therapy that would be more helpful to me? But I doubt it. I think autistic or not, I'd still just get CBT. And I don't work, so the equalities act stuff doesn't really matter for me, and there's nothing to stop me reading autism literature, diagnosed or not. There isn't a really logical reason why I need to be diagnosed, is there? I just want to be, because I've got this fixation on wanting to know. -_- but that isn't a good enough reason. Eugh. I'm SO BAD at just dropping stuff when I should! 

Hi Boggart

You explain your reasons for wanting a formal diagnosis very well, and they are perfectly valid, they're mine, too, and 'socks sums it up very well in answer to your last paragraph.

This fear of putting it to your GP isn't unique, although you probably haven't picked that up - it's contained within quite a few previous threads. I have to say that some people report some resistance from their GP, but my personal experience was the opposite so I can't speak on the subject through having 'been there', only from what others say. However, some who had the same fear found that when they finally found it in themselves to put it to their GP, the doctor in question was very ready to get on board with them, much to their surprise. I would hope that you too would be pleasantly surprised by your GP. They aren't experts. They can 'pre-screen' you, but they aren't expected or likely to have any more than outline inderstanding - that's what Consultants are for, and you're only asking to be refered to one.

I hope others who have had the experience will post some useful hints and tips for you. Also, I have no idea how people who self-diagnose use that knowledge, so again I can't comment and it isn't a choice that I would make anyway, I needed the professional assessement and you're right I think, when you suggest that others wouldn't find self-assessemnt easy to accept. However, for some people, getting a diagnosis seems to be an insurmoumtable hurdle, and we wouldn't want anyone who self-identifies to feel excluded from our community just for lack of a professional diagnosis - it would be cruel and isolating for some very vulnerable people if we said that, I think.

I think it's vital that we 'stick together. We argue and fight sometimes, but we do it in the way that families do, so in a way, it's nice to be one of the family - we are few. If you consider how ready we are to accept and talk with you, and hopefuly make you feel welcome and included, well sometimes that's as much as we can do. In so many ways, this is by definition an isolating difference that we have, so those few of us that exist need to be especially supportive with each other, and I really hope that this is what you're finding with us.

Sorry to ramble, I hope something there makes sense!

As CC says, your experience has a lot in common with our own. Welcome to the club!

the main reasons for getting a diagnosis are

a) so that you get the mental health treatment that is appropriate to your problems. If the MH team have done a questionnaire and are treating appropriately then you have perhaps achieved that goal? Understanding the ASD would be a key element in tackling your anxieties but otherwise if your are getting specialist MH help then the GP need not get involved in that too much?

b) so that you can get the reasonable adjustments in work (from the Equality act) and any other things that your condition justifies in terms of benefits and assistance.

c) the insight into your own condition so that you can help yourself.

I've gone through this and have to say that the main benefit to me has been the last one. With a diagnosis you can read the right books and stuff to help get you on a better track. Everyone is different and your difficulties and priorities may dictate that b) or a) are more necessary.

There is no need to apologise, I used a suboptimal word- the one I thought of after you commented on it was much more accurate. I was not upset- just wanted to clarify what I meant. :) 

I'm glad you relate, but I thought people would, because I focussed on traits where I match videos / descriptions I've seen of what autistics tend to be like. I'm not sure whether some of them are worth more "points" so to speak than others- perhaps all my matches are very general ones that everyone feels to some degree? Yes the laundry thing was the last straw on a bit of an anxiety-overload! 

I would not refer to myself as autistic unless I'd been officially diagnosed tbh. To me, personally, that would feel like lying, and starting to think of myself that way could get me into all kinds of trouble?!- what if I commented on it to a doctor or benefits assessor and then they went back and checked and said "no you're not?" I cannot say "oh well I am because I decided I match the criteria quite well"? Doesn't really work. I guess self diagnosis is fine, as long as you can remember to only use it for social reasons. I wouldn't trust myself. 

I guess the question is really- is it worth it? If I press this I could strain my relationship with my doctor. I really don't want that. I have a lot of other health problems that ARE more important. I need her to be on my side. I was hoping maybe people could help to offer the right words, or a clever way to approach it that I hadn't thought of, that would not be confrontational. I *feel* like there'd be benefits to getting diagnosed. There'd be social benefits- if I could just say "I'm autistic" it would explain a lot for people and give me a bit of leeway when I screw up. On the other hand, would it just make me lazy? I think everyone has to try, sometimes, to be considerate etc. With an excuse like that I might be tempted to try less hard. Aside from that, are there any other benefits? There are literally benefits, I suppose (as in being signed off sick) but it's not my autistic traits, but my anxiety and stomach problems that allow me to check most of those boxes- though it'd be an extra thing to list, I don't know if it'd really be worth many (any?) points on those forms. Then there's studying- I'm giving serious consideration to doing a bit of Open Uni- an autism diagnosis might allow me a bit of extra time on tests? Then again, the reason I'd really benefit from that, is poor concentration due to a combination of anxiety and malnutrition- I might be just fine to get it anyway. It's an extra bit of credibility, I suppose. The last thing I can think of is the anxiety itself- I'm awaiting more therapy. Would a diagnosis of autism affect how they treat it? It might help them to ask more of the right questions. Then again, simply telling the therapist I think I might be autistic could also lead them to those questions. Is there ANY good practical reason to get diagnosed? Does it help with anything in your life? 

Sorry, I didn't mean to criticise, the mild/severe thing is a personal view, it's certainly not a general view.

I love your answer, you make yourself very clear and it does look like a list of AS traits, and the way we see them. Everyone's experiences are different, we find, and for the most part we go along with it. There are people with different views and abilities, and for my part I try to understand what people are saying.

I could have written pretty much the same as you have. There is a bunch of us here who have similar experiences, and your final sentence really hit home. When we're on overload already, it doesn't take much to set us off, and afterwards be amazed that something so trivial caused so much. It's the last snowflake that causes the avalanche!

There are people on here who are self-diagnosed, and that's perfectly acceptable. Personaly, I advocate for a formal diagnosis, having been through one and feeling that it benefits me. It's finally explained all the things that were ever wrong, puzzling, hurtful, etc about my life, and it's certainly solving many puzzles for me.

I hope your journey does the same for you.

I meant mild as in, I don't have any learning difficulties. Perhaps the correct term is high-functioning? 

I know anxiety is common with autism- it's logical because autism causes you to get overwhelmed which leads to anxiety, so it'd be difficult to have autism without anxiety, I think? But it is possible to have anxiety without autism. 

I personally didn't find the questionaire difficult- only in the way that (as you said) some of the questions were slightly unclear, and I had to guess or ask boyfriend whether this counts as that. If I was being assessed by a person it wouldn't matter because I could just have them clarify. I don't have any problem being honest with / about myself. I don't feel awkward or embarassed about that kind of thing. I probably identify more with the male picture of autism tbh- from the little I've read about the female version, there's a lot of pre-planning and focus on learning to blend in, and covering mistakes. It is more logical, but I was always too high-strung for that- if anything went wrong I'd get too upset. 

The list of things that make me think I may be is too long- I can't even remember all of them. I've seen a few videos / read a few descriptions and I just seem to spend an awful lot of them going "that sounds familiar...!" 

Here's just a few of the kind of things I mean-

* I get really upset if boyfriend is late. I mean... REALLY unreasonably upset. If he's 10 minutes late it can cause a 3 day argument. Even if I'm trying to behave, it still bothers me enough that I'm all snappy with him. It is not good for my relationship. 

* I don't empathise well. A lot of people say autistics do empathise, so this may mean I'm something other than autistic, but it's what people comment on the most- I completely lack understanding of things I haven't experienced and which don't seem logical to me, like depression, or getting upset because somebody famous died. 

* I don't tell lies. Not ever. Not even the ones you're supposed to tell. I don't care about the morality that much- I just find it exhausting. I also have a lack of boundries- I'm not completely unaware of them, but I'm uncertain about when it's ok to cross certain lines, and often just don't care enough. 

* I don't really like to be touched- sexually or otherwise. Nobody ever abused me and I'm pretty sure I'm not supressing anything. I don't get screaming upset about it- I just don't get anything out of it and generally find it irritating.

* I have to know exactly what I'm doing before I can enjoy anything. I like video games, but I mostly only play 2, because I have to read the entire game wiki / notes, or I'll feel like I'm doing it suboptimally and get increasingly aggravated. Other people play dozens of different games and just jump in and play! I've tried doing that and it felt horrible. 

* I'm an insufferable smartass. 

* I have a very limited range of interests at any given time- my interests change slightly over years, but it'll usually just be one or two main things, and I'm very resistant to getting involved in new things if I don't feel I'm done with the old thing- having too many going at once is too tiring. 

* I don't. like. change. When I was a kid, my main aspiration in life was to be a teacher at my primary school, and earn enough money to buy the first house we lived in, because I just wanted things to go back to how they started. 

* I literally have no idea whether people like me most of the time. It's because of manners- I can't tell between someone being polite and being genuine. It's a constant annoyance. It frustrates me that people can't just be honest. When I was younger I was quite sexually promiscuous because it was an easy way to get people to like me, without having to go through complex social rituals. 

* I have a sense of humour, kind of, but it's about 10% of what most people find funny- even though it's been explained to me and I now understand it academically, my first reaction to someone hurting themselves isn't to laugh. 

But. On the other hand I can be empathic- if someone I like is upset I do go to hug them, and I want to, and I don't find that uncomfortable. I like the company of other people for at least part of the day- I can amuse myself happily for several hours, but I do get lonely. I want to make deep connections with people, and I have no problem sharing, or understanding what I'm feeling. I'm extremely logical and I can usually reason things out very well, but not always control them- i.e. I could tell you EXACTLY why I'm anxious, but not stop it. I'm not particularly prone to complete public melt downs- even right after unpleasant medical tests where I'm shaking uncontrollably and my pulse is through the roof I'm still able to talk normally to nurses- I don't shut down. Actually the only full on "melt down" I've had in ages was over laundry... go figure. I get upset about the most ridiculous things sometimes. 

Hello Boggart, quite a struggle you're having there, it seems.

Firstly, may I say that I take exception to the idea that there is such a thing as 'mild' or 'severe' autism. My own diagnosis involved the word 'severe', but in the scheme of things I cannot possibly understand that anyway - all I know is how my autism affects me. There are greater or lesser effects of autism traits, on different people at different times, and we do discuss that sort of thing amongst ourselves. I think that for the most part, we just accept that this is our reality.

Your GP will not hate you, will not 'get into trouble', and will continue to try and help you. In fact, what you say about your GP is exactly the same as I say about mine - my God bless her for being 'on my side' because, thanks to her, I finally got an explanation for who I am.

Sometimes, as an AS person, it's as if we're trapped inside a glass bell jar. People can see us, and we're desparately trying to communicate with them, but all that seems to happen is that we can't get past the barrier. It's very frustrating to stand in front of someone shouting to them, and they still can't hear.

Women are much more difficult to diagnose than men. I don't know anyone who doesn't find some of the questions ambiguous or misleading anyway, and the AQ test is NOT definitive, it's indicative and informative but it isn't diagnostic. Your doctor is right. It takes a trained professional to assess someone, and there still aren't enough of them around, an 'ordinary' psych team won't necessarily have a specialist amongst them, and if you weren't seen by someone who specialises, which is what your doctor appears to be saying, then they wouldn't know what they're doing.

The AQ test is partly the 'evidence' they use to refer you on to a specialist. This isn't disrespectful to them, it simply points out the still poor diagnostic facilities for ASD at psych team level. There are many posts on here about this very subject, mostly with the same, frustrating result.

Anxiety is endemic to ASD, but you have to remember that there are other conditions, even your physical health, that cause excessive anxiety too, so anxiety doesn't have to indicate ASD. That said, there are supposed to be clear pathways for your GP to follow in order to refer someone for an ASD assessment. This is supposed to be a requirement, and your GP is supposedly required to know what it is.

The AQ test itself is, I feel, awkward. In order to fill one in properly, you have to be very honest with yourself about yourself. Women tend to be, dare I say, 'born' with social affinity. Given that women say they can often hide in a group because of the ways that girls act as a group, I think that the 'social interaction' questions are maybe more appropriate to boys than girls, and there is plenty of 'thinking' going on right now about this very issue. It appears then that the AQ test as it stands may very well be male biased. Certainly, more boys than girsl are getting diagnosed, and if ASD affects each sex equally, then something is very wrong with the diagnostic process and we need to address that.

We usually tell people to remember that it can be very difficult for us to talk to people and tell them what goes on for us. One way to deal with that is to write a list of things that happen to you, the way that you think, and things that affect you. Most of us find this difficult because we start judging those things, and actually it's better just to write them down without worrying what others may think. Others have done this and found it very helpful in presenting their case to their GP, mostly because all the stuff you think, you can't remember to say when you're actually there, and often the self-consciousness of talking about yourself stops you doing it, if you see what I mean.

Having AS traits doesn't necessarily mean you're on the spectrum, but don't mean that you aren't, either. As I say, that takes assessment by a trained professional because it's a whole picture rather than a sum of parts. Try the writing exercise, don't be afraid to write anything down because it seems 'wrong' or 'trivial' - if you're AS, neither of those is true at all, quite the opposite in fact.

Good luck, I hope you get other answers on here and that somewhere in them you feel supported, helped and advised. There are no stupid questions, if you're asking, it's important to you and we will treat it that way