Undiagnosed but scared - I need your opinions!

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I think I have Aspergers. That's the first time I even typed it out, let alone tell anyone.

I'm learning that this is actually very stereotypical. I'm in doubt. I really don't want to start anything just in case I am wrong, and then everybody will think I was deluded or even worse, attention seeking, so I haven't done anything yet, apart from join this site, or told anyone. But it has been nearly a year now, and I am wondering if I will wait forever and suffer in silence. I feel like I am faking my life. And also I am female, so I've read that it would most likely be a problem.

So I want your opinions because I am considering taking things further. At least if you tell me I'm wrong it's only a minor thing. If I go through years of seeing the GP, asking for people to assess me (in other words, having to convince people that I have Aspergers), then be told I have it all wrong, I don't think I could take it. Excuse me if I seem very pitiful, just tell me what you think.

The biggest thing is social interaction of course. The thing is, I have a twin sister (who is just like me in every way) so I've never had to socially interact much - they already thought we were odd. Just beyond answering questions like can you read her mind and them comparing our looks, I never thought of them as people I could be friends with. It was just me and her. The only person in the world I feel comfortable around and can say everything honestly. So I never made an effort to have friends. When, 4 years into secondary school I finally had a friendship group, one of them told me that for years she thought I was strange, antisocial because I never smiled.

We were oblivious to what other people thought of us. We wore our uniforms with the top button done up, socks that went halfway up our legs when everyone else were rolling up their skirts, wearing ankle-length socks and wearing make up. On non-uniform days we would be the only ones still wearing uniform. We didn't care, I guess we were stuck in our own little world. I didn't make it very easy for people to interact with me. I'd stay quiet mostly, let them do the talking, I never knew how to react. I especially didn't like people to praise me, because it made things difficult for me. Do I say thank you or praise them back, are they making fun of me or serious. Most of the time I assume they're making fun of me, and I just wouldn't say anything. In year 10 I got sent to the school counsellor, who asked me a bunch of questions then said I could go back and see her anytime. I didn't want to, thought there was nothing wrong with me and didn't understand why she wanted to see me in the first place (my teacher asked her to apparently).

I got relatively good grades, even though in sixth form I skipped a lot of school because I hated it (at the time). I found it hard to connect with the other students and couldn't stand to sit through break, lunch and classes with them. My sixth form Head called me an enigma. Even then, I still didn't think there was anything wrong with me. Sometimes I am rude or blunt, and people don't like it (think it's rude / have an attitude) Once in sixth form, we had mock interviews. My interviewer asked me some questions, some quite personal I thought, that they wouldn't ask in a real interview. I told her so, and when it was over and she was writing her notes up on me, I asked her what she did for a living (because the school invited people in to interview from the career you wanted to pursue). She said nothing. Later, my head of sixth form asked to see me and said my interviewer approached him afterwards specifically to say I was very rude. I don't know if I was, I just remembered being very nervous and trying to make conversation when she was writing her notes.

Now I go to university, I haven't seen my sister for 9 months, and it was only after we separated to go to uni that I realised there was something wrong with me, and want to seek help for the first time in my life. I researched online and found Aspergers. Before this, I never really paid attention to 'autism' as a whole. I had no personal connection or experience with it. University life is lonely, and difficult. I live with 11 other people and every day is social interaction. I started skipping lectures and seminars like I used to skip school. I then couldn't cope with deadlines because I had no idea what the course was about. I have exams in 3 days and this whole year has been a waste of time. I tried going to university counselling, but it's too slow. I wrote a form in November, they gave me an initial assessment in Jan. and offered me counselling in May (now). But there's only 4 weeks left of the academic year. I hate that I have bad grades now. I hate that I have no real friends. I want my life to go back to the way it was, when I had my sister.

Sorry this is so long... I'll just quickly address the other symptoms I've read about. I don't think I have any sensory issues actually, apart from nightclub music. Obviously I haven't had much experience, but at first I went with my flatmates and it was terrible. I felt like the club was collapsing around me, or maybe it was just me. The music deafened me, I couldn't stand to be touched, even people just trying to get past me, I can't describe it. But everyone else seemed to love it. I don't know if that is a sensory issue though.

Most of all, I am honest. I cannot lie, nor can my sister. When we were young, it didn't even occur to us to lie. Now people just laugh when I say something blatant, but everyone else doesn't touch on. I can understand jokes that people tell, but they're not funny to me. I just pretend to laugh. I can't make conversation either, I either say really stupid things or completely embarrass myself. I once asked a girl how to use a tampon. She just stared at me and said I don't know you that well. My fascination (same as my sister) when we were young was reading. I would read everything, anything. Mostly I read novels, which is one thing that makes me doubt I have Aspergers. I used to read and read and read novels. We went to the public library, and with 4 library cards you could borrow 24 books. We'd take them home and read and read. In our house, we had rules about not reading. No reading until you've finished homework, no reading before school, no reading in the toilet... I spent my breaks and lunchtime reading, with my sister. Now, I still read and can read very quickly, have a good vocabulary because of it. But I have another passion now, which I love just as much.

Last thing, about routines. I don't have a daily routine (otherwise I wouldn't be up at 5am still not having slept) but I live by my list of things to do. I have to write every single thing to do on there and it's constantly updated. Then I do each thing in that order, and delete it once it is done. My document (on computer) gets updated about 10-15 times a day. I can't relax unless everything is on there and up to date. This I know is strange. That's why only my sister knows.

If you've read up to here - thank you. It means a lot to me.

here's a very brief test based on the criteria docs use:

www.iautistic.com/test_AS.php

First off, you're going to need to learn to laugh at yourself in these situations. The last thing I wish to do is offend but that's the funniest thing I've read all day. Jah is aware my own life story is thousands of times more embarrassing, primarily because I'm a guy... I wished every other day since kindergarten for school uniforms, just in the interests of blending in and downplaying my HFA phenotypes.

You've done an admirable job of dispassionately considering all the common indicators of high functioning autism in your life, now it's time to accept that you don't always need the perfect words to get your emotions across the air you must learn to clear simply by walking into a room. Again, my last intention is to overwhelm you, so please know that some of the emotions we're discussing haven't been ascribed words yet, however you're an exceptionally clear writer so I'm not worried for you there. It seems your twin sister is very fortunate.

Since it also seems like you've been strong enough to make it through the majority of a quite rigorous school system, please do not blame yourself if it happens that you need to take some time away from university. I'm not currently a student but I've tutored before and I work with many organizations in & around my local university and the difficult social climate will not always be something in your control. Accepting this places a lot more of your academic life inside your control though.

Also maybe be a bit cross with your family and school for not teaching you about those things.

I second this. I had to take many breaks from my education--it took fourteen years to complete my bachelors degree, in part because I needed a stable, supportive home life and the ability to live off-campus, away from the stress of the social environment. Taking a semester away can let you regain control and give you some perspective while you sort out some of your other anxieties; it helped me immensely. Attending as a part-time rather than full-time student reduced my stress as well, but lengthened the time it took to matriculate. Many of us fall apart in college, because the support structures we counted on as children are suddenly more distant; simultaneously, there is added pressure to make friends (or at least not enemies), to live on our own or with others, and to do well in a new school and new environment, perhaps while working to pay the bills.

One thing to bear in mind, because it is a spectrum, many traits will manifest to varying degrees and in different ways, from one individual to the next. Like you, I couldn't possibly adhere to a strict routine because of external demands from other people but I have to keep my list, and have to have a few things in my day which are routine and predictable. I also read novels, and you will find that many others (females in particular, for some reason) say the same. You will also find that many of us have had moments where we felt "almost normal" and wondered whether we really could be "on the spectrum"; or conversely, felt that the description fit us perfectly but friends or family argued that the diagnosis could not possibly be accurate. So how does one know for certain whether one has Asperger's? To me, it is the fact that I felt like an "outsider" all my life until I came here, when it suddenly seemed as though there were hundreds of people who made sense to me, in ways that "normal" people did not. That is very validating! But it is also a little scary, because it means that you have to try to navigate the world differently from most of the people you meet, which in turn will result in some people wondering what is wrong with you.

One thing I do suggest, is to make sure that the person who does your assessment is very familiar with autism / Asperger's, and especially in females. This will allow them to consider your case objectively. I read a report of a study recently which suggests that many women do not manifest Asperger's in quite the same way that men do because our differences in our genetic makeup allow for us to compensate for some of our deficits, or adapt in ways men cannot (details: click Economist article) I have found many counselors and therapists to be hostile and unhelpful, if they do not understand Asperger's and how it affects my awareness and perceptions of things. Indeed, the setbacks I encountered from such counselors were severe, because I was trying for many years to conform to a pattern of behaviors which they prescribed but were utterly unnatural to me.

Best of luck to you on your journey! Thank you for sharing.

Honestly, it's hard to tell based on your post. You should take an AQ test. But make sure and clear your mind so you can answer the wuestions without bias.

I just realized I owe you an embarrassing story, and I don't even need to tell it. I will never again in my life know the luxury of counting how many people have seen me naked.

I really can't tell if you have AS or something...go take an Aspie test in the internet or some AQ test to get a rough idea if you actually have it or not

"I'm learning that this is actually very stereotypical. I'm in doubt. I really don't want to start anything just in case I am wrong, and then everybody will think I was deluded or even worse, attention seeking, so I haven't done anything yet, apart from join this site, or told anyone. But it has been nearly a year now, and I am wondering if I will wait forever and suffer in silence. I feel like I am faking my life. And also I am female, so I've read that it would most likely be a problem.

So I want your opinions because I am considering taking things further. At least if you tell me I'm wrong it's only a minor thing. If I go through years of seeing the GP, asking for people to assess me (in other words, having to convince people that I have Aspergers), then be told I have it all wrong, I don't think I could take it. Excuse me if I seem very pitiful, just tell me what you think"


Hi OutThere - well done for coming out here.

One question I would like to ask is "how is your sister coping with the changes to your lives?".

You really should try not to worry about what others think. Most people will simply not know what you are talking about!

I'm guessing that you are in the UK - have you looked at the NAS website? There is a lot of very useful and relevant content on there, and they consistently make several points which I think are important:

1. There is no universal agreement on diagnostic techniques (which I take to mean that it would be possible for one professional to say yes, whilst another one might say no).

2. There is no 'treatment' for ASD, although there may be certain services which might be useful depending on your particular circumstances.

3. People are very often content just to be given an explanation for the difficulties they have experienced throughout their lives.

My own opinion is that unless you have good reason to think that a formal diagnosis will lead to changes in your life, then you should ask yourself whether a formal diagnosis will add anything to the self-diagnosis which you are already considering. Getting a formal diagnosis can be a long, tortuous, unpredictable and potentially expensive process. What will you do if the first time you get assessed, you are told that you do not qualify for a formal diagnosis?

Keep reading this forum, and maybe try to find a 'group' which you can attend. Or how about starting a group at your university - there are almost certainly other people on campus who are suffering in similar ways to you. My own experience of groups, however, is that if you are fairly 'high-functioning', it is not always easy to fit in. I wonder if others on here have had the same experience?

Suffering in silence is unfortunately what many of us end up doing - in my case, there is one person who understands my idiosyncrasies well enough to allow me to relax in her company, although I think my adult children are gradually beginning to accept me for what I am.

I really hope that your researches will bear some fruit.

THIS.

It sounds trite, but don't be so hard on yourself...you say that you're scared, yet you're afraid to seek help because "people" will think you're seeking attention. Would you want to try to help someone who was scared and didn't know what to do? You're worth helping, and there are folks willing to help. Seeking help is actually a sign of maturity; it means that you are growing in self-knowledge, learning your limitations and submitting yourself to the guidance of someone stronger than you in those areas.

In my case, I was underemployed and scared and had no idea what to do next. I had been attempting to enter a religious community but had been refused because I showed signs of autism, in spite of the fact that, a few years previously, I'd spent an indecent sum of money visiting a ("generic") psychologist to rule out any type of disorder that could be an impediment to that life. Its a good thing I was scared, too, or else I would have felt too embarrassed to ask for help; as it was, I was able to go through a Counseling Ministry (no form of religious affiliation required, by the way) and was able to meet several times with an actual specialist who knew right away that I had Asperger's; my co-pay for all of my visits with her was less than the cost of one visit to the psychologist who ended up telling me that I just needed to socialize more.*

*Edited to add: I realize that this is often NOT the case for someone seeking a diagnosis, but I didn't think it would be for me, either. I thought, "I'm female, I've got my driver's license, I make eye contact and I'm somewhat expressive, I make a little money, and most people just assume that I'm shy...even though I've wondered about Asperger's, no one has ever suggested 'autistic spectrum' to me before, and even if I could afford an autistic specialist, it could take months or years and there's no way I'll receive a diagnosis." I was astonished that my experience turned out the way it did, rather than the way I thought it would.

Last edited by GibbieGal on 05 May 2014, 10:00 am, edited 3 times in total.

Having an explanation worked very well for me. There was some degree of tension about it ("AAAA! I'm autistic? I'm going to end up sleeping on a park bench....! Okay, cool, that's not SO bad-bad, maybe I can find a sheet of plastic for free if there's rain..." )
Now that I know what's going on its a lot easier to just be patient with myself (and the reactions of other people toward me). I had felt a lot of pressure to conform and "do SOMETHING" but I realize that its okay if accomplishing stuff just isn't very important to me; I feel a greater freedom to just be myself and, to the extent possible, to do what I want in life without worrying if I'm meeting someone else's goals.

It worked well for me too. But your own experience is an illustration of the fact that there is no guarantee that you will get a useful or even a meaningful response from a professional. There are simply too many professional opinions to choose from. A carefully researched self-diagnosis is quite likely to be as good an explanation as anything you will get from the professionals.