Do you tell people you have AS without a diagnosis?

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YellowBanana
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12 Jul 2012, 2:46 pm

I see you are in the UK. The diagnosis process here (on the NHS anyway) can take some time. Start by going to your GP, let them know what you're thinking and ask to be referred for an assessment. Be prepared for your GP to be a bit dubious but they should refer you anyway. You'll be referred to the mental health team or psychiatrist (depending on area). They'll do a first assessment to rule out other things that may present ASD like. If you're lucky you'll end up with a psychiatrist who has an interest in autism spectrum disorders in adults and who, after assessing you, can give you a more thorough assessment and diagnosis. If you're unlucky they'll refer you to somewhere else for your assessment ... more waiting.

I was referred by my GP (who wasnt dubious at all) to a psychiatrist. It took 3 months to get an appointment. The psychiatrist had a special interest in ASDs and after four meetings in 3 months I had a diagnosis. Six months in total. Which I think is relatively quick for the UK. My mental health continued to deteriorate and in February I was referred to a specialist at the local autistic society to ensure the diagnosis was correct and to assess my support needs. Again it was 3 months from referral to the first appointment with the specialist. Again he confirmed my diagnosis ... in fact he said he'd never seen someone who "ticked so many boxes" and made it to adulthood without a diagnosis ... and made several recommendations for my support. Now I'm entangled in the process of getting funding for that support so I think it'll be a few months before it can start.

My only advice would be to write things down either as a prompt for you to make sire you don't forget anything important or to hand over to the various professionals if you have difficulty speaking.


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Washi
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12 Jul 2012, 3:16 pm

Whenever I want to mention it to someone the way I tend to word it is, "I meet the diagnostic criteria for Asperger's, but am not formally diagnosed" I am not borderline, being on Wrong Planet has made me realize that. I have a 4 year old with autism and sometimes when we're out people will try to have a conversation with him - he's really cute and a people magnet :roll: - and he speaks mostly in echolalia so people give me a lot of confused looks when they talk to him, so I tell them he's autistic and often they'll say oh, I know someone who has Asperger's, or because my son is more profoundly affected I might come across someone who asks me if I think autism is being over diagnosed. I usually mention it to those people that I meet the criteria for Asperger's, and if they look skeptical I mention that Asperger's presents more subtly in women so we often fly under the radar. I find family are the ones most likely to want to put blinders on and deny autism, but I also had a bunch of birth anomalies/defects that I recently discovered fit the diagnostic criteria for one of the syndromes known to cause autism so when I bring that up it proves I'm not faking or imagining anything .... isn't that sad that I'm almost thankful for my birth defects for the sake of shutting people up on whether or not Asperger's/high functioning autism is an over reaction?



lickcakes
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05 Dec 2012, 12:59 am

Fee, thanks for posting this topic. It's rather nice to read a question I would ask as something that has already been asked and answered.

The way I'll be saying it is something like, "I strongly identify with the characteristics of Asperger's."

I can't wait to have enough money to afford a diagnosis (I'm attending college right now)...



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05 Dec 2012, 2:18 am

The only reason I have no official diagnosis currently is because I don't have a spare two grand to spend on one, that being said, I'm as close to 100% positive as I can be without the dx that I have it. My mom brought it up to me originally, she described my symptoms to a psychologist friend of hers who suggested it. My family, even my dad, who hates labels, are all of the opinion that I have it, so there was no concern in regards to convincing them, but my friends (and I've only told two of the six friends I have) are less convinced. They aren't mean or dismissive about it, but one -- whose primary reason for thinking I don't have it from what I could tell was that I don't have tactile hypersensitivity (actually I do, just not to reasonable pressure) -- was convinced it was just high sensitivity mixed with chronic anxiety due to a troubled past, and introversion. The other, it's kind of hard to tell since we haven't talked about it much, but she said something one day that made me wonder if she didn't believe me, she said: "I have a lot of friends with AS, [insert list of forgotten names here], and apparently you." Her boyfriend has AS, but we don't bring it up much, so I have no idea where she stands on her opinion of my dx when comparing my behaviour to his.

Anyway, the point of that long ramble was to say that I generally don't disclose arbitrarily, but if the circumstances feel right, I will bring it up. I don't think this will change once I finally get an official dx, whenever that may be.


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05 Dec 2012, 4:52 am

Before I was diagnosed I used to tell people 'I'm pretty sure I have Aspergers but I am not diagnosed'. Most people agreed with me. In fact it was after I got my diagnosis that half my family went 'WHAT!?' and started questioning it. I think that might be because half my family fit into the spectrum and BAP and don't want to admit it :lol:

When I first got told by someone that I might have Aspergers I read about it and it just completely fit (although there were other things which I later discovered were other conditions!). It was the head of the SEN department who first told me about Aspergers and she got me the support I needed to attend college (although that went disasterous but that's another story!)

If you want varification, go for it. Just don't expect it to happen overnight as I naively did. It took months of referrals, differing opinions, seeing a psychiatrist who was much happier to diagnose me with personality disorders and offer drugs and almost constant badgering from my parents on the phone to them that got me to the diagnosis stage. It was long and very frustrating. I always say that I entered the mental health system sane and left it completely crazy! Also don't expect much professional help afterwards, it's quite often 'you have Aspergers goodbye'. It doesn't sound like that is what you are after though (but as I said the long process can cause problems!)

Good luck :)


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05 Dec 2012, 5:17 am

I also want to say thank you for this thread as I am in a similar position.

I am 31 and like a couple of others here, I don't know how I made it this far without realising what the problem was, because now I know it is so obvious, but I didn't know what AS or HFA were until earlier this year. I have had a private appointment (therapy, not diagnosis) with a specialist in adult ASDs who has given me an unofficial diagnosis, or at least her opinion that "there's not much doubt" I have AS. I seem to be pretty textbook.

I could honestly not have told anyone I had AS without at least getting that expert second opinion, I couldn't even have considered it. I am not able to manage other people very well and if they challenged my telling them I had AS I wouldn't know what to say, and I certainly wouldn't be able to deal with anyone not believing me or making fun of me. I'm amazed some people can do that. I am in two minds about telling anyone about it now I have had my self-diagnosis unofficially confirmed. In my case I think I will wait until it is official, even though that will probably take a while. I'm very cautious, though, so it will depend upon you and your situation and how much you want to share what you have discovered. I agree with those who said it is probably better to wait if your family might not believe you. In my case, I'm a bit concerned about certain family members going into "denial mode", and I think an official diagnosis would help with that problem.



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05 Dec 2012, 5:48 am

Washi wrote:
Whenever I want to mention it to someone the way I tend to word it is, "I meet the diagnostic criteria for Asperger's, but am not formally diagnosed" I am not borderline, being on Wrong Planet has made me realize that. I have a 4 year old with autism and sometimes when we're out people will try to have a conversation with him - he's really cute and a people magnet :roll: - and he speaks mostly in echolalia so people give me a lot of confused looks when they talk to him, so I tell them he's autistic and often they'll say oh, I know someone who has Asperger's, or because my son is more profoundly affected I might come across someone who asks me if I think autism is being over diagnosed. I usually mention it to those people that I meet the criteria for Asperger's, and if they look skeptical I mention that Asperger's presents more subtly in women so we often fly under the radar. I find family are the ones most likely to want to put blinders on and deny autism, but I also had a bunch of birth anomalies/defects that I recently discovered fit the diagnostic criteria for one of the syndromes known to cause autism so when I bring that up it proves I'm not faking or imagining anything .... isn't that sad that I'm almost thankful for my birth defects for the sake of shutting people up on whether or not Asperger's/high functioning autism is an over reaction?


Hello, I'm genuinely interested about your birth defects, if you don't mind saying what they are? Thanks.


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05 Dec 2012, 8:16 am

I've yet to say to anyone that I've actually met that I have aspergers as if it's a fact. Simply because I don't have a Dx and I know I could be wrong. My best friend, who is an OT, (who has suspected for a long time that I'm on the spectrum) does though. It still sounds weird to hear her say it.


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05 Dec 2012, 9:08 am

fee wrote:
I am in the early stages of finding out I have Asperger's and finding countless things that I can identify with. It's a daily discovery of yet more traits... so much that, quite frankly... I am not too sure how I got to 35 years old without sussing this out. So I am considering the whole diagnosis thing.

My husband thinks I should accept I have AS and get on with my life - he just doesn't see the point in having it made official. But I have struggled with my relationship with my mother, father and sister because of my mouth (opinions, talking over them etc) and I really feel that I just want to get dx'ed so I can go to them and say "look! I am not a bad person afterall!". I can only do that with an official diagnosis because I just KNOW what the reaction will be otherwise...

"Oh, what do you have NOW?"

They labelled my hypochondriac many years ago. I have always had bouts of depression and am on medication for anxiety... but they think it is all in my head. SO, going to them and saying... hey look, I have AS but no it's not official... Well... you can imagine how that would go down!!

You may be thinking, why I am even bothered about these people, well... before you say it... they are my family, I love them, and I just want to fit in and feel accepted, and liked. I know they love me, but they avoid me like the plague. It's kinda lonely, and really gets me down.

Which leads me to my question... if you do not have an official diagnosis, how do you tell people without sounding like you're 'making it up' or whatever... or don't you tell people at all?


If you get an official diagnosis your family would know why you are the way you are, but they probably still would be bothered by your behaviour.
The difference is that you would have an official excuse.
It is unlikely that telling them “I act this way because of AS” will magically make them like you better.

If you really want to fit in and be liked by your family, maybe you can ask them to help you understand why they avoid you and you can work on how not to offend them.
Maybe your family would be more willing to help you if you had an official diagnosis.



neecerie
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05 Dec 2012, 11:47 am

In all honesty, since I started the process of 'oh wow this explains pretty much -everything-!', I have only mentioned it to two people.

My mother, because I wanted her opinion on things, and it was interesting that alongside the symptoms that I do match up with, some of the ones I did not think I did....her response was 'I had a huge issue with you and that as a child', which was somewhat shocking to say the least.

The other person is a friend who is a pre-school teacher, in the context of us discussing someone else who was so obviously on the spectrum...


But I honestly don't think at this stage in my life (42, employed, and basically what most people would consider successful enough) that telling lots of folks would accomplish anything. It just helps ME understand ME and perhaps cut myself some slack when I can't manage some things like social events, etc.

Since I focus a lot of my energy into being functional at work, my leftover coping mechanisms are pretty much zero, so I don't see or talk to live people much at all, and I used to get upset about why I couldn't manage to juggle a social life and work like everyone else did.....now I just realise that in order to remain working and independant that I had to in essense 'pick one' and I don't beat myself up over it all as much.

But I realized I can learn to use other coping techniques at work, to make that a bit easier as well.

So for me the whole self diagnosis thing is nothing more then a learning to help myself process.



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05 Dec 2012, 3:43 pm

I wouldn't even consider telling anybody even now that I am diagnosed, I would never consider myself to have Aspergers if I didn't have a diagnosis. Even though I was pretty sure that for the past five years I had it. I don't because it's not what defines me. If I was to tell people I'd probably be the guy with Aspergers rather than just a person. If I was self employed I wouldn't give a f**k and tell people, but I'd rather something like this not getting back to them. Other wise they would blame every mishap on me and more than likely be a scapegoat. It's a bit like educational jargon, is it the special needs pupil or the pupil with special needs. In most cases the general public refer to it as the special needs pupil.



Samian
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05 Dec 2012, 6:21 pm

neecerie wrote:


But I realized I can learn to use other coping techniques at work, to make that a bit easier as well.

So for me the whole self diagnosis thing is nothing more then a learning to help myself process.


Me too. The things that trouble people with AS trouble me too. Learning to cope with some understanding of AS seems to work for me.



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05 Dec 2012, 11:28 pm

I don't tell anyone I'm diagnosed with anything. I don't even know what I'm diagnosed with. It's either PDD-NOS or social anxiety disorder, no one remembers. I know for a fact that I have Asperger's syndrome, but I don't feel too confident about sharing that with people, especially when I have no official diagnosis and the disorder sounds like 'Ass Burgers'.



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05 Dec 2012, 11:40 pm

Before I was diagnosed, I rarely mentioned it. Lots of people don't take it seriously if isn't officially, and to be honest, although a lot of self-diagnosers are correct, many are also wrong.


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06 Dec 2012, 12:46 am

I've told people I suspect I have it. Had one woman who's worked with other autists claim she could hear it in my voice. I've had two psychologists tell me otherwise, my current LCSW tellsme he sees autistic traits in me. This isn't something I would tell just anyone, based on the stuff I have read here. People are so flippin ignorant it isn't worth mentioning to most; As I lamented in another post, so much for autism awareness" . . . :roll:



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06 Dec 2012, 5:25 am

I haven't told anyone, mainly cause I think people won't understand what Im going on about or that they'll make fun of me for having a weakness