Aspies For Freedom

What else can it be if it isn’t Aspergers, I’m wondering for some time now? I’m not exactly the typical display of Aspergers, if there is one for that matter. What’s a doctor going to diagnose and what’s reality?

I didn’t know I’m the odd one at age three and four, but rather thought the world around me was what was so utterly wrong, nonsense and while often very uninteresting, from time to time so fascinating due to that strangeness. So at age four I already knew a great deal about how I was to behave. I’m still a master at imitation, I’ve never learnt it on purpose, like in “you must be just like person XY”, but like in “you mustn’t get expelled from school or get beaten up”.

So at age four I didn’t jump around much like I felt, didn’t expressed myself, my amusement, happiness, fear much for the next 12 years because I didn’t know how to laugh. The concept of laughing was almost alien to me. I quickly realised it meant: someone else is happy! But even though I tried smiling in front of the mirror sometime in school, I rarely managed more than a awful looking grin. Sometimes I smiled and laughed, but then, I really felt like it, full of glee. Then I jumped around and did my things if I couldn’t keep the happiness bottled up anymore. I laugh today, does for one year know and I like but, but that doesn’t change the fact I’m still feeling like bouncing and screaming or singing and expressing my happiness like that.

I always had a, compared to other children I sometimes talked to when I wanted to know something from them, a much firmer understanding about what is going on, although I was the child who felt as if it was placed onto the wrong planet.
I feel like being around here is my real full-time job and I’m still as tried of it as I’ve been at age four in Kindergarten. Nothing becomes easier although the things I know become more and more.

I’m perfectly capable of using language, always was better in doing so compared to my peers, but I hate talking because I have huge trouble in doing it. Words don’t fit, words mean nothing and everything they don’t mean to me they mean to other people. I can’t express myself by speaking a “foreign language”.

But I’m not showing. I’m odd, I can become violent, loud, burst out into tears still, jump around, sing one word I like to myself for long times, listen to the same song for days and forget eating, hear words in my mother tongue I don’t understand, run into a car because I heard nothing although I hear too well, get stressed for the rest of a day due to a small change in a lesson in school, but other than appearing eccentric or dumb to people, there’s nothing apparent of that because I always knew nobody wants a person to act like this. If I’m not leashing out because I can’t keep up anymore, then of course I’m insane.

How the heck is a doctor in any position to speak about me if that person is talking to me for one and a half hour? And what’s that person going to tell me? What’s like me and similar to Aspergers/Autism? I haven’t found anything like me. I mean, it appears I’m fitting the Aspie traits quite perfectly, but I feel closer to people labelled with Kanner’s autism. I’m so messed up.

No, you are not messed up.  You are simply a unique individual.  We all are.  Labels are only useful if, well, you can make good use out of them.  If not, finding or applying a label is meaningless.

When my son was evaluated, the psychologist had told me he expected to find that my son was just my son, just his own unique self, with no identifiable special needs category.  But he discovered that Aspergers applied, and it has proved useful not only in attaining my son services that have improved his life, but also in providing me a key to understanding him that has improved both our lives.  If things had worked out differently, I would have thrown the label away.

If applying the label helps you understand yourself, keep it.  If it doesn't, get rid of it.  That simple ... and that complicated, I'm afraid.

There is nothing wrong with simply being who you are.  Nothing at all.

What you mentioned is really common:  I have read several many people who get diagnosed as AS instead of "classic autistic" because they have forced themselves to appear "higher functioning" in order to survive school, work, etc.  I may be one of those myself if you look at certain aspects of my "functioning".

This levels stuff is not important.  Maybe it sounds like you fit somewhere on the spectrum, this is enough to explain to yourself why/how you are the way you are, and that this is not "messed-up", just it's your forma de ser (if I'm guessing right that your first language is spanish, you know what I mean.  If not, the inadequate english translation is "way of being"), which is not like a lot of others', but it is like some others'.  And even if your forma de ser were like nobody else's, it is still valid.

Anyway welcome here, and I hope the doctors don't mess you up too much.  Don't pay 100% attention to "experts."  Diagnosis is in no way an exact science, and you don't need to be anyone different after dx than you were before, as a lot of others will tell you.

Some of us have talked about this whole "somewhere on the spectrum" thing in other places, which I can't find right now, due to the change in Search method on this site, and to my own despiste and/or scattered brain.

Here is an important quote:

that I found on this important blog: http://ballastexistenz.autistics.org/ , one of whose themes is that the hierarchy of LFA vs. HFA/AS [see categories relating to "HFA", "LFA", "functioning", etc.] is not really valid and is not what we should be concerning ourselves with.

Check out MSDD. I think I have it. There is a link elsewhere on this board.

Hi Sora!  :smile:

And welcome to the Forum. Your description about showing joy was just like mine- bouncing, jumping etc.
Also what you wrote about the language and cars suits me better than well.

I do get laugh-attacks however- that is when I begin to laugh it will not stop even when I´m rolling with stomachpain and all that. And, most of all, i seem to laugh at totally abstract things that other simply cannot understand.

about expressing my emotions my way: I do that with very trusted persons, but in "outside-world" I try to behave as normal as possible. It works relatively well most of the time, but takes lot of energy and attention, so I need lot of time alone afterwards to recharge my energy...

Don´t worry so much about at least expressing your JOY yor way- I know few other people (possibly AS as well? or similar traits?) who do the same, and even though it´s not the "usual" way of expressing joy, it seems to delighten and amuse others, I´ve actually never seen anyone getting devastated or angry about it. Surprised maybe, but that´s all, mostly. So try and feel free to express your joy like that, at least in your private life.

Thanks to all of you very much for answering. You're right. I mean, I like being me, wouldn't want to change with anybody else, but life's always so full of suprises, some good ones, some bad ones. Since I left my school, I feel as if I've suddenly grew up in a way that scares me but fascinates me all the same. The world has suddenly opened up, that’s “real world” then? It’s so huge and confusing but filled up with all kinds of interesting things.

My family's no support, they don't even know I have an appointment or suspect autism. I shouldn't even have an appointment with that doctor, because I'm over-age and this doctor usually only does diagnosis on children. I'll just have to wait and see what this doctor is going to do. I dearly hope she’ll pick the correct label! I'll have to keep up the facade of not telling my mother for another month. She'd hate to think I'm different.

For reasons beyond my imagination, I can't understand why she prefers thinking I'm doing everything on purpose. She’s acting weird for a few years now, I suppose she’s become ill and we argue badly every day, stressing each other. It sometimes comes to physical fighting but I really hate violence whenever I’m not loosing my mind because of extreme stress. I want them to be happy like me, but they aren’t happy and I don’t know how to make them happy and remaining happy myself at the same time. I don’t fit in this family well because of my way of being.
I wish I’d be able to express my happiness and joy the way that comes natural for me, but then I do so, only before some of my friends who I trust deeply. Oh, I was sooo excited after seeing Phantom of the Opera and Jen, a friend of mine, was utterly amused and annoyed at the same time she said because I was extremely jumpy and loud. That’s been okay though, it’s been an amazing day and she’s perfectly fine with how I sometimes react, just annoyed and pouting. I wish I’d be able to do that in front of all people. But then, what would people say? I’m not shy about such things, but what teacher or employer will like his student/employed jumping around in delight? There’s much to do in society…

I was wondering on something. I’ve read a few things about stimming. So, is flapping the hands = stimming? Then this one things I’m doing for as long as I can remember, I wonder what that is and if it’s stimming. If I get stressed, when something’s not as I expected, or if my mind is way too hard working, I hum. Most of the time no melody although I have whole musicals singing in my head only, but only a constant sound. It’s drawing all my concentration. I sometimes don’t realise I’m doing this though.
Should I mention such things when she asks me why I would think I’m autistic for example? I never know how to answer that question, I’d talk for a whole day, because it involves my whole life. If I have a question, I’d want to answer it fully and truthfully so I never know where to start.

I don’t like that categorising either, in LFA/HFA/AS because in my opinion the different criteria, especially the thing about language, are not very logical. Form what I read before and what you said here now, many doctors and experts think a great deal of these things, that’s what is confusing me nevertheless. Don’t people use their heads to think? It seems as if you have to be carefully on how to say things so the others, in that case doctors in general, get what you mean and I’m quite bad at this for reasons unknown.

And I checked about MSDD, haven’t found much information yet though because it’s said the term is knew.

Sora, you remind me of a friend of mine from college who loved Phantom and also expressed her joy by bouncing, flapping, etc.  I am not so high-energy, sometimes I envy that...

When I told my friend about AS, after I discovered it myself, she absolutely rejected any idea that she could have this.  She basically said that there might be something wrong with me, but with her?  Never.

Note: she was the one who couldn't hold down a job because of social confusions, so I thought it could be useful to her to know about AS.  But hey, what can you do?!

So I am glad for your sake that you have a different idea about autism, becos if it's part of our way of being we can't very well say it isn't, can we?!  We can adapt what we need to in order to survive the workplace, and in order to communicate with people, and hopefully your family will be more understanding if you can show them the positive sides of autism also.

Tony Attwood is a "respected expert" who has a nice section about "What is Asperger Syndrome?" on his web ( http://www.tonyattwood.com.au/ ) and you can get that to show them, if they trust "experts" more than actual autistics.

If you get dx with a "lower-functioning" form of autism, it is going to be a bit harder to find "experts" who will tell you that that is a perfectly fine way to be and that you have even some advantages from being that way.  But you will find plenty of actual "LF"-labelled autistics who have put quite a lot in writing to explain that.  And that is what counts, the view from inside.  

It sounds like you already know how to adapt to the NT society for work and whatever, so you understand enough of the view from outside already.

I fight with my mother a lot sometimes, too, especially in times of big changes.  It seems we both (plus, she is unofficial AS also) freak out at times of change.  So... maybe just maybe this is what is happening with your mother and you, becos of her illness.  Maybe she needs to be reminded that you love her and you will still be there for her in the future.  I am totally guessing here, I could be way off-track so just ignore my comment if this doesn't make sense to your situation.

I think that is the sort of thing they want to know about, but I have never been to a psychiatrist so I don't know what it's like.
I am pretty sure they will ask you the questions from the DSM or whatever it's called...

I went to a local Autism-centre that is actually meant for children and young people- under 20 or so.
In the first place I didn´t know that the person I was talking with was Doctor of Psychology and psychoterapist as well- specialized to work with children mostly. I went there for counselling, and it was actually good that I had thought she´s just a counsellor, as I´ve had some bad experiences with psychologs that didn´t know anything about Aspergers. Had I known that she was psycologist I would have been much more scared, as I would have had the pressure to "prove" that I´m not faking- now, thinking about it afterwards, it was actually silly fear since who would (and could, most of all !!!) fake autism even on a milder spectrum?

The reason they meet adults as well, is that there´s practically no place adults can go. This woman I met, is now working more with adults and practically does that work outside of her "official", paid job. She is trying to get more help for adults, that were never diagnosed as kids.

Depending on a country this diagnosis- whether youre AS or HFA- changes a lot. I was told that I was actually autist as achild, have turned out to be Aspergers instead now that I´m already 36- but i still do some things that are typical for Kanner-autism (LFA) and actually this meddling about those differences is quite confusing for me as well...

She said however, that those differences is  just moving on spectrum, and many adapt to be Aspergers until adulthood at least, many earlier. Difference between HFA and Aspergers is quite unclear to me- I will get a therapist who is specialized on that, but it also takes time...Maybe by X-mas I know a bit more about it.
And for me it´s really difficult to estimate how good or bad my social skills are, but I definately have those sensory problems and I do get very tired of socializing, big growds are confusing and it´s difficult to follow conversation if it´s not on one-to-one-basis etc.

As for family-support, I am not sure yet if I´ll tell my family or not. When i told them earlier that I suspect it, they were quite disagreeing with it- based on the fact that I talked so much to adults as child about my special interests- well, part of the syndrom actually!  :lol:
Luckily my husband understands now quite a lot about the subject- he was with me when we went to that Autism-centre- and he has always called me "alien" but he doesn´t mean it in a bad way, he just thinks that I´m very unique and unlike any others he has known. And during the time we´ve been together, we have learned to overcome many misunderstandings- happens still all the time, but less than before- and now with the right knowledge we´ve been able to solve many problems that were practically impossible to solve before...

Well, I hope you find the right person to make your diagnosis, and that your friends support you. For me as I moved out of home, it was actually my friends who teached me how to take care of myself. Therefor I have been very lucky, that I´ve had so good people around me, and who didn´t consider me stupid or weird just because of my lack of practical skills and peculiriaties in social behaviour and such. Instead, many of them have been amazingly patient and supportive. I´ve learned practically all my household skills from them, and also lot from clearer and better communication to make my self more understood and understandable...

I wish such friends for all people on Autistic Spectrum. They are really the best thing a person can get. :smile: