So confused

[Nathan Jones]

Hi All

So I just got the results of my assessment for Aspergers Syndrome. They explained it was a very difficult diagnosis because I express and have expressed so many typical asperger traits. However, they have given me a non diagnosis on the basis that my communication skills seem varied and I just gesticulate well and I seem to understand or have a good grasp of emotions.

I have tried to explain that I am 42 years old and that I have spent most of my life practicing such skills. Ive become a great actor, observing and mimiking others to the point I'm not immediately identified as odd anymore. In the US you seem to have an understanding that Aspergers can develop the skills throughout their life but in the UK they still seem to be looking for adults with severe communication disabilities.

Apart from that they seem to think I sure most of the problems that a person with Aspergers would have... so how come I'm not Aspergers?

I don't know what to do or think. I am definitely an Asperger, all my family believe I suffer from Aspergers. I share so many traits it is ridiculous. I have suffered all my life. I don't know what to do or think or where to go, finding my self-diagnosis was like a catharsis, my depression and anxiety seemed to be under control for a change as I felt I finally understood myself. Now its just going out of control again and I'm very concerned for myself. How can they do this?

Any help or advice would be much much appreciated.

 

[The Phantom]

Hello,

we suffer from very similar problems. I am an undiagnosed possible aspie whose suffered form anxiety (as well as OCD) and depression, most likely because I'm very misunderstood.I have not taken any professional assessments or am diagnosed, but I've researched and taken online (credible) tests and they have pointed out I am very likely to have Aspergers syndrome, and according to the research I've done I agree completely. I've posted a thread on the forum asking for help, and listing my symptoms, and many people have replied telling me I sound like a very typical case, or that I sound like them, something along those lines. However, I brought up the idea of me having aspergers syndrome. My mom understood for a bit (about 34 hours), but then later on said 'remember when you thought you had aspergers?" and proceeded to laugh. Both my parents believe the idea that to have aspergers you must be 'awkward' in public, and that it should be easy to tell. And that you need to be shy. Well, I do lots of performing, such as school plays, musicals, and dance shows. And I have friends, believe it or not. So people immediatley dismiss any idea of me being a possible aspie. But they don't know the most important bits, like how my 'friends' are mostly peopel I just talk to in class and sit at lunch with, not hang out with and talk to and things like that. I only have two very close friend in the area, and one of them is moving. So there's that. But I sit with popular kids at lunch, and talk to them. But no one knows is, hey, I'm an (amateur) and I, well, act. I'm waayyy younger than you are, but I'm a girl, and studies have shown that females with Aspergers are harder to spot (hence why males are more likely to be diagnosed) because they are masters at adapting to their social surroundings. With the exception of one, all the kids at my school who appear to be affected by Aspergers are male, because it's quite obvious. People don't realize I look at their nose, or forehead, or the wall behind them when I'm talking to them. I can only make eye contact for a limited amount of time before I can't stand it anymore. This is only of the many symptoms people don't realize I have, hence why they ignore me as a possible aspie.
Since you are 42, that explains the amount of experience and time you've had to learn how to fit in and go undetected. Even if it's not obvious, I wouldn't doubt you having aspergers if you felt to strongly about it and had all the symptoms.
There are much more articles talking about how girls are more likely to go undiagnosed, but I am sure somewhere there is something about ANY person with Aspergers being able to act as if they're neurotypical. I suggest you find a good, credible source and perhaps show a doctor/psychiatrist, and tell them about your symptoms.
Sorry if this doesn't' help too much, I'm very new to the Asperger community and not to mention only a teen. But this is the best I have (for now), so I hope I was able to help! If I have any new ideas, I will tell you.

Good luck!

 

[Nathan Jones]

Thanks for the reply, I empathise greatly with you.

I have always been very effeminate in my thinking and associate more closely with females than males. I fear there is nothing I can do, we are so far behind in mental health care in England. All the doctors give me are anti-depressants but they just give me more problems. They cannot prescribe mood stabilisers for bipolar disorder until you see a hospital ppsychiatrist, and that only usually happens if you are suicidal, because there is such a shortage of services here. I feel that I need to stop taking my anti depressants until I get suicidal again so I can get some proper help... but that is so dangerous, so stupid, so risky, but what else do I do?

 

[The Phantom]

Interesting, that you find your thought process for effeminate, because I am actually quite a tomboy myself, but I'm female all the same.

I feel greatly for you, it's terrible to hear how behind England is in mental health care. In fact whlie browsing the help and support section I saw another user who has trying to find help to get diagnosed, because they didn't know any proper places/people to talk to for the best diagnosis. They are also living in the UK. Maybe that's related, not too sure. I'm sorry to hear the lengths you would have to go to for help. While I obviously don't recommend you to stop taking your anti-depressants, I do not blame you for thinking that in the slightest. I would do that too, if I had any meds to begin with. My family has no idea of my depression, and have never bothered to give me any medication for my other disorders, or at least consult a doctor. Of course there is the daily jelly vitamin, but that's not going to do anything is it? Haha.
Like you, I do not live in a place where mental health care is extremely attainable. I was recommended an establishment by a friend with ADHD, but in order to get a general test to screen for any potential disorders, I would have to pay about $22,000, AND take a 6 HOUR LONG test... my parents wouldn't be willing to pay the money, nor I the time to take the test. The best I can do at the moment is go to a counselor my brother went to after he was suspended from school, but even that my parents are putting off doing. they're asking me to wait after we come back from vacation, but they'd be able to help more if they knew sooner. And that's just for Aspergers. They know very well of my OCD (runs in the family) but despite what my school counselor said (get an official diagnosis so they can suggest ways to help) they are either putting it off, or telling me to 'just train yourself to get over it' or 'it's not that bad thought' (they have no idea). I understand what you're going though at least a bit. People believe think seeing an obvious in-your-face problem means it's worhty of help, but in reality some of the worst issues can come in subtle packages. Well, what can you do? Hopefully this was of some help. Keep posting on this issue, I would like to help you if I can, considering we're going though such similar problems. Pardon me for asking, but if you are interested and are ok with dedicating the time, could you possibly look at my post: Help Please: Possible Aspie. Very Very long, only read if you're interested in helping | AspiesCentral.com

(unless you've already viewed it, then that's fine, you don't have to answer it)

I've already got lot's of helpful advice, but I would really like to hear from you, because we're in a similar situation. If you want to (no pressure) could you give me your opinion? I want to know if it's worth seeking a diagnosis for Aspergers.


Thank you!

 

[NothingToSeeHere]

Unfortunately this sort of thing is very dependant on who is doing the diagnosis, even with the standard multi-person assessment.

My diagnosis report did note that I have a good understanding of emotions (something which I have put a great deal of effort into learning) and both initiated and upheld good reciprocal conversation (again something I have practised and takes a great deal of effort) but their view was that this had only served to conceal my autistic traits and didn't prevent them from giving me the aspergers diagnosis. If I had had your assessors it sounds like I would have had a non-diagnosis too

I suppose if you had the assessment through the NHS it won't be possible for you to try again with different people Could you possibly try for a private assessment? Or do you have a local organisation aimed at helping autistic people you could ask for advise? We do here in Norfolk...

Sorry, I don't actually have any advise, I just wanted to commiserate.

 

[Wireless]

You could ask for a second opinion.
Diagnosis: what to expect - | autism | Asperger syndrome |
That link is to the National Autistic Society website. On that page it explains a bit about what to do if you're not diagnosed as autistic and disagree.
If you contact them they may be able to help you further.

 

[Beverly]

Again, I too have learned communication skills in my 49 years. I have learned emotions and, how to read them in others. It isn't natural to me and, is a conscious effort but, like anything you do repeatedly enough times, you get good at it and, to an observer, it looks natural, second nature even if it isn't.

We learn to do those things through trial and error. Like any child, we remember when a social interaction gets a negative reaction and, try not to repeat that error too often. Just as ASD people, we have a harder time learning exactly what all is included in that error. We may get a negative reaction for saying "You have ugly hair." and, while a "normal" would equate that to saying anything is ugly about a person, we don't so, next time we say "You're pants are ugly." and get another negative reaction. For us we have to test each and every thing we find ugly because to us, one is not related to the other at all, so it makes no sense as to why both got a negative reaction.

Over the years we do learn to make the connection closer to what a"normal" does automatically but, it is a hard learned skill, not instinctive at all.

 

[AsheSkyler]

I hear many often have to go and get a second opinion. I can imagine how nerve-racking it would be to go through a few narrow-minded doctors first.

 

[Progster]

I agree with the others who have said that you should seek a second opinion, perhaps with a private clinician. I think that the NHS are reluctant to give out diagnoses because they want to cut the costs.

I can also pass as NT in many situations - I have to, because I'm a teacher. I can get through the day at work, but feel exhausted afterwards. I have relationship and emotional difficulties, don't make friends easily and shut down in social situations because I find it so hard to interact.

I may be able to interact on a one to one basis, but I have many problems joining in group conversations. That is something which doesn't come across in one to one session with a psychiatrist, but which can greatly affect a person's professional and social life.

 

[Suzanne]

I am an undiagnosed aspie and the reason for this is because, I live in France and have done for nearly 14 year's now ( come from the uk too) and it is proving extremely difficult to actually find a therapist who speaks English, nearby. If I lived in Paris, no problem, but I live roughly 6hrs away and when we do go near by, it is only for 3 days!

I was talking ( rather courageously, I felt) to an aspie's mother, not long ago and she is like: I KNOW EVERYTHING about aspergers ( she knows very little). Well she came out with: you should get diagnosed and I guess there are many versions of aspergers. This is because she does not know me and just making sweeping statements.

I would fail the test, simply because I can read a person very well and now can look someone in the eyes, but like you, have spent years practicing and mimicking. I share may aspie traits, but most people are narrow minded and only look within the box!

All I can say, it is a crying shame that we have to get a professional diagnoses, for the sake of being respected or taken serious and yet, are we taken serious or respected, once we have been diagnosed? That is a debatable question. Perhaps some, but not all of us blessed!

 

[Suzanne]

Thanks for the reply, I empathise greatly with you.

I have always been very effeminate in my thinking and associate more closely with females than males. I fear there is nothing I can do, we are so far behind in mental health care in England. All the doctors give me are anti-depressants but they just give me more problems. They cannot prescribe mood stabilisers for bipolar disorder until you see a hospital ppsychiatrist, and that only usually happens if you are suicidal, because there is such a shortage of services here. I feel that I need to stop taking my anti depressants until I get suicidal again so I can get some proper help... but that is so dangerous, so stupid, so risky, but what else do I do?

I was put on prozac for 16 years! I took courage and did cold turkey and ok, not for the weak ( but hey, I am weak), because every day, I suffered panic attacks ie 5 or more a day. My head felt that it was going to whiz off; I felt anxious like no one business but a month later! ALL DISAPPEARED. The sheer mind bending depression, LIFTED. I did not need to sleep in the afternoons. Severe headaches that rendered me in bed for 2 days, GONE. I lost a bit of weight too. Conclusion: meds where causing the issues. Also I had suffered from social depression and found, that prozac and the such, should only be met out for clinical depression.

 

[Karin]

I am thinking if there is a reason for you to need an official diagnosis other than for yourself? If the assessment is 'nearly aspergers' and you know the rest of the story, your impression really has been validated. You were right. And if you hang around this forum for a while you'll keep getting confirmations that you are right just from reading about other people's experience and recognizing them in yourself.

If you need an official diagnosis for some reason, then the situation is different.

I don't fit the social aspect of aspergers but share so many traits with my daughter who has just been diagnosed with PDD-NOS (another diagnosis at the same 'level' as aspergers) that I don't have much doubt I share that diagnosis as well. I don't feel the need for an official diagnosis, though, as I don't see it would get me any benefits.

 

[Beverly]

I agree, if you need the diagnosis for some reason, get a second opinion but, official diagnosis or not, you know yourself better than anyone.

I am quite anti-therapist because of a bad experience with one. I will never have an official diagnosis but, I do not need that to know what I am. Knowing or even having the diagnosis doesn't change who or what I am. I am the same person, my career didn't change, nor my life. I simply figured out why I struggle with certain things and, found one label to place all of those struggles under.