"It seems really random..."

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If this isn't in the right forum, please move it to it's appropriate destination?

If you have read my introduction, then you know that I haven't officially been diagnosed with Asperger's Syndrome, but I have a lot of the signs, and the doctor I had needed that one more appointment to take care of everything (but then we moved...) - and if you saw me, you would probably/most likely assume that I have it (provided you know about it and such, of course).

Anyway, whilst I have been submitting my blog, 6birds.net, to various website reviewers, I'm often recognized as random, and other things I can't explain to them... I'll explain something in my footnotes on my blog, and I'm always told to use it for explanations, and that my footnotes don't even relate to what they're supposed to be explaining... But they do. They're not random little comments and/or remarks, you know? Nothing I say is random - everything's related, I just can't explain it...

Should I tell them I have it? Or should I explain to them this? How am I supposed to be able to explain my actions to them that others might not be able to understand? I love having my websites reviewed because I enjoy finding out other's perspectives, but I don't know how to NOT get called out for the things I do that I cannot help...

Some others here will probably disagree with this, but I personally don't believe in telling people you have something until it is known 100%. Like I said, I know others will disagree and I am not trying to start a debate. I just believe in waiting until you know for sure. I say this because, while people are often usually correct when they suspect it in themselves, they are not always correct, and before portraying themselves with a label such as this, it should be official. This is just my opinion though.

I am going to disagree with littlelily613. From my perspective, I went from feeling like I was lying if I said I had it for sure to lying if I said I wasn't sure. And then I was diagnosed. Given the difficulties (monetary, finding qualified experts who understand adults, etc.), if you are certain you have it, I do not think it is problematic to say, at the very least, you suspect it or think you have it, or if it's so obvious to you, then saying you have it is very likely truthful.

That is, I don't think you need to know with 100% certainty that you have it. 90% is probably enough. And a doctor telling you that you have it is not 100% certainty of its own.

The thing about it is that people misunderstand and take you to mean something other than what you are saying, and a lot of NTs get nasty if they think someone is self-diagnosed. And littlelily613's opinion is not an isolated one - other autistic people have stated they feel the same way (it is lying to say it if you do not have an official diagnosis). I am not saying that there's anything wrong with that opinion, although I disagree with it.

Have you considered finding a way to explain your supposed "randomness" without directly referencing AS?

I think that your randomness probably points toward the Autistic Spectrum. I have been told I can be too random in my talk, too. And I, personally, would not be on this site without having been officially diagnosed with HFA/AS.
Not being able to make notes (or sometimes speech) make sense to anyone but yourself is pretty Autistic, I think. Just my $ .10 worth, but you have a pretty good chance of AS/Autism.

Yes, I know from the way most of the discussions around here go that I am probably in the minority. By that I mean people who others do not even know or see on a daily basis will tell someone they are likely on the spectrum based on one or two characteristics that person has written about. This is without knowing more characteristics, without seeing the person in their daily life, and without knowing their developmental history (as my psych points out: it is not so much what I am like TODAY, it is far more important what I was like as a child because if the behaviours were not there THEN, then it is not autism. If the behaviours manifested as an adult alone, then the cause is something else.). No one here can say for sure by reading a few lines in an anonymous post whether or not you are on the spectrum. I've also heard of people on WP who found out they had a different diagnosis which they themselves agreed with and people are still trying to convince them they are autistic instead. So, this is why I know I am in the minority.

The reason I feel the way I do is because I know people who were 99% certain they had it, then found out they didn't. Their real diagnosis made complete sense to them once they heard of it and did some research. Yes, we know ourselves more than other people know us. On the other hand, the professionals know more about a variety of diagnoses more than the average person does and can pick up on things we do not even notice or even know about. Some of those people I know were going around representing what it was like to be autistic, and they were not even autistic. So, that is all I will say on the matter. I know most people here will encourage you to preach it loud and proud. I am not saying you are wrong and do not have AS. I was self-diagnosed for YEARS before being officially diagnosed, but I was really quiet about it as well until I knew for sure. What I said above is why I feel an official diagnosis is important before publicly (ie. in the real world) declaring yourself as a for-sure person with ASD.

Last edited by littlelily613 on 28 Jun 2011, 10:16 pm, edited 3 times in total.

I'm in a similar position, in a way. Not with the blog, but not being diagnosed. My opinion on the matter is that you should only say you have AS if you are certain you have AS. But I don't necessarily think that this certainty has to come from a doctor. I just don't think it should be 100% based on your thoughts alone.

Here's the thing. I come from a long, long line of delusional people. Not people who literally have dementia or the like, but several members of my family are practically incapable of seeing the truth. They don't see their own actions or the actions of others, they see what they THINK happened. It makes my life really, REALLY confusing. So, to make a long story short, I really don't put a lot of faith in my own perception of the world. I have no way of knowing if what I'm remembering of my own actions is the truth or the truth as I remember it. I'm not even certain if I perceive the world objectively on a daily basis. Sometimes I wonder if I'm not obtaining a better understanding of myself by learning about AS, but am instead subconsciously warping my view of myself with my AS obsession so that I now see myself through an AS "lens."

So, because of that, I personally will never say that I have AS based on my own view of myself. And because I don't trust any one individual to see the objective truth in a situation, I wouldn't put much stock in an individual who says they have AS based on their own self-diagnosis.

But, that said, I don't see a professional opinion as being "word of god" either. So many people come here with stories of misdiagnosis, and doctors are just human beings. Mistakes can be made. And many people choose not to seek an official diagnosis for various, valid reasons. There's not some magical blood test that can tell you with 100% accuracy if you have AS or not, and even educated people can be idiots, so I believe that people CAN have certainty without going and getting an official diagnosis.

Personally, I think certainty about AS should come from two sources: certainty in your own heart and certainty from an objective source outside yourself. If you feel strongly that you have AS and someone (preferably more than one someones) besides yourself also feels certain that you have AS, then that is a very solid argument that you do in fact have AS.

For me, I will feel certain enough if my father thinks I have AS and after I've spoken to a professional. I don't want an official diagnosis for insurance and career reasons that I've read about here, but I do think that self-diagnosis is incredibly tricky business and that a professional could provide some objective insight into the matter that someone closer to me couldn't. If both of these sources turn out to be fairly certain that I have AS, I'll feel confident in claiming that I do have it.

Does it help if my current doctor says I have it, too? But like I said, I haven't been diagnosed. So it's like... Do I? Or do I not? :/ Heh.

Depends, are you certain you have it? Do you think you will still be saying you have it several years in the future? Do you think you will look back and regret saying that you have it? Do you have any doubts, in other words?

If you're certain and you've got people backing you, why not commit? That's my view, anyway.

(BTW, I really love your avatar. The colors are so vibrant and blendy and awesome.)

You want random? Go talk to someone with ADHD.

I don't really think saying AS would make a difference. People aren't going to be any easier on you for saying your randomness is because of it. People are really critical on people who use their diagnoses 'as an excuse'. I don't always believe that it's used as an excuse personally but have come across many people that do.

The best thing you can do is train yourself to stay on topic. I still catch myself out and have to go back over my writing and try to make it all connect. I remember when I first started to post on forums I couldn't stop going off on tangents.

I'm also part of the minority that thinks you should keep quiet about it until you are officially diagnosed. I wouldn't even tell people that I barely know. It's something to tell families and friends. A lot of people just won't believe you.

No you shouldn't say anything until you are officially diagnosed,
I'm part of the minority, though it's starting to look more like a majority, that thinks you shouldn't say anything until then.

It seems innocent enough, but you also gave to remember that many people will use you as a social stereotype for aspergers, changing what they believe the needs and difficulties a person with aspergers have, now suppose that you are wrong, and by chance somebody you told went on to have a child with aspergers, this is somewhere in which real, though unintentional harm can caused.

I know, that's what I think, too. I believe I have it, because even before my mom told me about having Tourette's and being in the process of being diagnosed with this, I was taking quizzes and researching Asperger's Syndrome, Tourette's Syndrome and OCD, because I was certain I had it. I just didn't know HOW to tell her, "Mom, I think I have these... All of the quizzes and behaviors and everything match ME..."

So, yes, I am certain I have it - I just don't want to tick another Aspie off because I haven't been officially diagnosed...

I don't enjoy being told I'm wrong simply because I know something isn't right with me/like others... Does that make sense?

P.S. Thank you! I love it, too. I got it from another forum I'm on, in the gallery, about two years ago. I'm glad I did because the forum is now closed.

Actually, she's a blogging buddy/friend. She just wasn't included in the "coming out" post - if that's what you want to call it - that explained all of this whenever it was posted because she wasn't blogging/her site was down.

I don't like having to train myself to do something that isn't me... That would be like me being someone else, because I'm me. I like the way I am. I'm a very sweet and caring person, and I love to help, and that's just what makes me me. I'm not training myself, but thank you for the feedback.

So... It's harmful? That seems really harsh.

I did tell her, though, because I do believe I have it. I also looked around the web at how hard it is for diagnosed Aspies to get/keep jobs because their boss found out that they have it. I don't want to get diagnosed and that be publicly out there for ALL to see job-wise, etc., because I just don't want that for me.

I know that not every person with a disorder/syndrome/etc. is alike, and I hope that the people I do tell are open minded and not ignorant about it.

I don't like special treatment, either, and so far, the people I have told HAVEN'T given me special treatment - they simply UNDERSTAND me better, and that's all I want.

I want them to be able to understand me better rather than to just assume I'm crazy or a spazz or something.

One of the reasons I do not think an official diagnosis is necessary is that experts who do diagnoses themselves have stated that someone who comes to the conclusion that they have AS most likely has AS, and has logical reasons for this conclusion. Yes, there is a risk of being wrong, but there is also a risk of being wrong with a professional - look at all the people who come here who have gone through one or more misdiagnoses, or were unable to get a diagnosis at all because they didn't meet some idiosyncratic criteria like "Doesn't act like Rainman." Never mind the cost of getting that diagnosis.

I do think people should really be sure, but I can't decide whether or not they're sure. In my case, I'd started talking to people, and several told me either "I thought you were" or "that makes sense." The people who told me they didn't think it could be true had reasons that didn't actually make sense (mostly that I wasn't like autistic children that they'd known, or used too much sarcasm and too many idioms, or bantered).

I do think people should really be sure before they say it, and I do think people should do what feels correct to them. I do not believe there is 100% certainty ever, and I think no one knows you better than you know yourself, so it's pretty much a judgment call. The big deal here is picking the wrong thing and thus assuming that there's no treatment for you (say having ADHD and thinking you are autistic - ADHD treatment can be very effective), thus not getting treatment. Seeing a professional may still be a good idea even if you can't get or afford one to evaluate you for AS.

Also, the thing that makes it difficult for me to agree with "You should not say it unless you have been officially diagnosed" is that it creates stratification, and in the US that stratification may mostly be along economic lines, as diagnosis may be inaccessible for people who can't get access to medical care. I think that if most self-diagnosed people with AS are accurate about their self-diagnosis - as Attwood says, and I think I saw someone once say Baron-Cohen also said something similar - then it is perhaps better to go with all of the people who could benefit from claiming the label for themselves and understanding themselves better than focus on the possibility of harm if a few people misdiagnose themselves.

If it's important to you just say you suspect you have it. That's the truth. If they don't value your opinion on the matter, why should speak to them anyway? They likely won't value anything else you say either.

My psychologist thought I had it too...but I still didn't consider it official until it was officially diagnosed. Her saying I had signs of it was not an official diagnosis--I had to do that elsewhere and go through early childhood development, etc.