Dealing with Recent AS Diagnosis

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I'm 24, male, and I've recently been diagnosed with AS. While I say 'diagnosed', I haven't sought an official diagnosis and I don't want to, rather my psychologist drew the conclusion after two years of sessions and I'm happy to work on his and my own assumption that this is correct. As you can see this is a rather long post, and have small expectation that anyone will labour through; I'm mostly posting for myself. I guess my reason is that I'm currently very confused; while this is a great relief in many areas, for both myself and my family, I also feel like I've lost my framework for interfacing with the world.

Growing up I built a persona of sorts for interaction with others, and with each interaction (failed or otherwise) I would add a little piece to the puzzle, and when things went awry I simply deduced that I needed to add another piece to make things work seamlessly. (I had always thought that this was how everyone acted, and so never figured that there was any problem.) I describe it like the story of the golem: here I had this clay monster that I used to do my bidding, which worked well for everyday acquaintances, however the problem lay in that I was becoming increasingly aware of the large gulf between polite acquaintance and real friend. It wasn't until being diagnosed with AS that I put the pieces together, and realised that my 'golem' made me seem distinctly disingenuous to anyone I tried to get close to — the problem being that it wasn't 'me' doing the interaction — and thus this golem, it now seems useless dust. And so, I am at once grateful to be gone with something that has driven so many people away from me, but lost without a replacement framework for interacting with people.

While I don't wish to sound arrogant, I am quite intelligent, more so than the vast majority of people I meet (believe me I wish I could shove a crayon up my nose and be normal). I think that my intelligence has allowed me to very successfully camouflage myself as 'normal' (once again, I thought this was how everyone acted) and I have become extremely adept at analysing body language, facial muscles and voice intones and inflections — so much so that I can readily read people's inner longings, etc. — just not when I'm directly involved in the communication. Also, despite having the underlying workings of someone with AS, I don't think that I am at the very severe end of the spectrum, and don't present with many of the obvious symptoms. All of this, I believe, has culminated in a very difficult road to diagnosis, and I feel a lot of anger toward the past. During high-school I was one of a handful of students randomly chosen to be part of continued psychological research, my answers of course resulting in a visit to the school counsellor, although this lead to nothing. I saw a psychologist several times at 18 and remember quite accurately explaining to her that I felt severely isolated and like "someone on the wrong planet". "You'll be fine," she said. I even harbour some resentment toward the psychologist I'm seeing now for taking this long to reach a diagnosis, because I had a very promising relationship started last year that I destroyed in utter confusion, and I feel like this could have been averted if I had known about AS sooner.

This brings me to one of the dilemmas I'm currently struggling with: whether or not to contact certain people from in my past and explain to them why things went the way they did. I have had several short-lived and unsuccessful relationships, the most recent being with a girl who I considered my soul-mate. (I have some suspicions that she might share some AS traits.) I ended these for what I thought, at the time, good reasons, only to very soon regret, renege and be rejected. Although deep down I wish that I could get back together with this girl I consider my soul-mate, I have little hope of this happening, and my motivation is not to lure her back in any way. The truth is that I care about her more than I can express, and I feel like she deserves an explanation. I realise that I hurt her very much when I ended things (I think she was very much in love with me) and fear that my continuous attempts to re-engage with her after this only hurt her more so. She is now with another guy and when I see her I have an unshakeable feeling that she is miserable and isolated. I might add that my psychologist has advised me that it wouldn't be a good idea to contact her and tell her about my AS, nor that I should suggest having AS traits to her. (I agree with the latter, although think that if we were to resume communication I would eventually say something after knowing for sure.)

Finally I want to note an overwhelming feeling of being 'found out', which is so complex and confusing that I don't know how to react to it. Although I didn't directly tell my siblings, they now know and have expressed that they're glad to finally know why I was so different. But I feel a shame at facing them, like a liar found out after many years, because I feel like I have been lying all this time to my own family. I want to tell them that I love them, but when I've never even hugged them, I just don't know how.

I have heard it said that one cannot become a better person, without first knowing where they have problems. Finding out about AS doesnt change who you are, or what you have been. But knowing does allow you to see yourself from a new perspective, and understand things better. If what you have been doing up till now isnt working, then perhaps it is time to try something new. Rather then attempting normal simulation, try acting in a way thats more natural for you.

Its hard to drop everything you have done so far, but you have to realize that your past is built on a flawed foundation. It is only with the knowledge of who you are that you can build a new foundation that will work better for you. This may sound like useless psycobable, but the annoying fact is that it is true. The best thing you can do now is find out more about yourself. Talk to others here, and see what does and doesnt work. You may need to try somethings differently. Rather then going to parties you dont enjoy with people you dont know, try a new way of making friends. You may find that interacting with other people in a way that is more natural for you gets you better results. You will probably get called weird more often if you act like yourself, but then again you are weird. You shouldn't have to change yourself to suit other people's expectations.

As for dealing with people in the past. I cant tell you exactly what you should do because I dont know your situation, but there isnt many ways it leads to a good outcome. The results I have had are:

1. Anger (My mother's reaction)
Most people dont know what AS is. So when you begin explaining that is a form of autism, most people think that your lying. They will say things like, 'you cant be autistic, you can talk'. Or other such nonsense that is commonly portrayed in the media today. They will then become angry at you for trying to blame your problems on autistic children. And no, I am not making that up, people will become angry, and accuse you of insulting autistic children, and their families if you tell them you have AS.

2. Confusion (friend's reaction)
If you try to explain what AS is without referring to autism, most people wont understand. The best way I have found is to just tell people that my brain is wired differently due to genetics, so I will probably act a bit weird. This seems to help people get understand the stimming, but they still dont understand why I dont want to go to parties or date other people. Overall, telling people you have AS really doesnt help either of you a lot if they dont know what AS means.

3. Denial (My brother's reaction)
'No, you cant have AS, your just making that up because you dont want to act civilized. Your bad attitude, and failure to do simple tasks like have a relationship are your fault. If you didnt intentionally act so poorly, people would get along with you much better. You should stop blaming your problems on some made up diagnosis, and start acting like you know you should.'

4. Shame (My fathers reaction)
'Dont tell people that, they will think your crazy! Look, just because you happen to struggle in a few areas doesnt mean you should go around announcing it. Nobody else needs to know about this.' He basically tried to sweep it under the carpet and pretend nothing is wrong. I guess this is understandable, since he himself tends to show alot of the traits, and he doesnt want people to start thinking he is weird.

5. Acceptance (My friend, after some explanation)
'O, well I guess that explains a lot.' Overall, this is the best that you can hope for, and most people who already dislike you (say an ex-girlfriend) will not be predisposed to be open and accepting. Even if you tell people about AS, and they understand, it really doesnt change things all that much. They know your weird, and will be less likely to be offended by your weirdness, but if you dont see them very often (like an ex-girlfriend) then there will be no big benefit to them knowing.

Overall, you have just found out something very important about yourself. The best thing you can do is learn about who you really are, and then build off that foundation something that works for you. Your past is your past, you cant change it. What you can do is learn from the failures, and build a better world next time.

Welcome home music_for_airports!

Do you think the 'ugly duckling' felt shame when it eventually became apparent that he was a swan? When he lived with a family of ducks he acted like a duck - to be accepted. He wasn't lying - he was surviving. You weren't being a fraud - like you said yourself, you were camouflaging.

As for how to tell your family that you love them - you write so eloquently, maybe it would be easier for you to write to them than talk to them.

You have just begun a whole new journey of self discovery. The reason your 'puzzle' never seemed to work out, was because the pieces you were working with didn't match the picture on the box. Now you have been handed a new jigsaw. And it's no ordinary flat piece of cardboard either - this one is holographic .

Thank you both for your feedback. I guess I'm very lucky in that the few people outside my family I've told about this have been very accepting. And it is true that I do feel a little like the ugly ducking become a swan — throughout my life I've never had a sense of who I am, and now I'm just beginning to see.

With regards to telling my ex-girlfriend, and other people from my past, I can't escape a feeling of obligation. I feel that I wronged someone I care deeply for, and in honour of the effort and love she gave to me (even if it's now gone) I think she deserves to know why I sabotaged things. I haven't done anything rash for the time being, but I am considering drafting a letter; she may just throw it in the bin, but at the very least I'll have some sense of atonement.

Welcome to wrong planet Music, I know you will find many like minded others here and lots of folk that will help you along your self-discovery journey.
It sounds like many here you have been through a rough time to reach this point.
Hopefully from this point onwards with more knowledge things will look up for you.

there's not a lot specifically for the adult asperger & hfa
(ah, only 24, a kid)

i'd suggest reading

Michael J. Carley, Asperger's From The Inside Out


welcome, by the way; very recognizable

At least knowing about aspergers frees us from the mistaken belief that everyone else is like us. And, having some sort of framework for realistically assessing our strengths and weaknesses provides a foundation for trying to change some small parts of it. Past that, I'm not sure.

I didn't run into a diagnosis till I was past fifty, and decades of failure, reassessment, starting again and failing still weigh heavily on me. As does the damage I've done to other people through all that time. If only there was someone to blame, I'd be bitter about it, but there isn't. NTs can't change their reactions any more than I can.

You sound like my twin brother, only I don't have any brothers..........or do I???
Seriously, the way you described yourself, is almost word for word how I would describe myself...its almost eerie.

You and I are the same age and seem to have nearly the same problems associated with diagnosis/treatment. Only I have, until recently, been somewhat afraid to approach a psychologist about AS. But that's another story.

First, in response to your diagnosis (if you want to call it that). I think knowing gives you an edge others haven't hoped to get. It allows you the chance to explore yourself with more depth and satisfaction than many are able to naturally understand. Logic tells me that everyone on the planet can be boxed into a particular set of thought processes and symptoms that joins them into a group. Consider that at any given time there are billions of people that have absolutely no idea why they do some of the things they do. For that matter, they're not given the perspective and insight to see themselves from the third person, which can stagnate anyone. With any given person there are genetic traits, that coupled with environmental factors, can throw them into a manic depressive, obsessive, or bi-polar state etc. But they may never realize it or understand it. Much less choose to accept it and use it wisely.

I believe knowing is a great advantage, in that you have a chance to understand some of your natural tendencies and why. AS has been defined as a disease because symptoms can be seen as detrimental, but unfortunately generally society and semantics don't underscore the benefits. I don't believe the difference between a low functioning and high functioning autistic reside entirely in physical mutations but environmental factors. I'm sure you can sympathize with that because of your ability to camouflage your symptoms. I think now that you know, you should explore all aspects of it and understand that with enough willpower you can control yourself to use your "disease" to your advantage. Surely, you can agree that there are, at least, a few of your symptoms that have helped you over the years. You should wield this knowledge. It is not an excuse, it is a way of doing things. AS will never make you not turn your paper in on time. Certainly not all on it's own. Like anyone else with a noticeable problem, you must "deal with it". It's tougher sometimes, but oh so bitterly true. I don't tolerate those sympathies considering the large number of (arguably) more severe disorders that go unnoticed and undiagnosed yet their sufferers overcome simply because they have to. So do we. At times you will have to fight your tendencies just like anyone else, and other times they'll help you beat out others. But the last two sentences apply to every living human. What makes you different is now you know a little more about yourself, so you are better equipped to deal with your problems.

Secondly, about your relationships. I've learned that the past is most definitely stoic. Apologies are nice but changes in the future are more meaningful and productive than living to apologize. I think you should listen to your psychologist. Specifically, the part about telling your ex you have AS. That is not a discussion to be included in apologies. You were the way you were, and that's not entirely the fault of your AS symptoms. I think it would be far wiser to learn from the past armed with this new revelation, and to carefully approach the future. Perhaps, start by just talking to her, maybe make an apology for hurting her, and tell her your feelings. Walk the gauntlet you're sure to be pushed through for being a jerk. Then she'll let you know if it's ok to start again. This time you can do it right. There are no expectations though, you need to consider the fact that you're likely to be rejected. It may end up that she never wants to talk to you again, but trying will help add closure to the situation. And when you find someone special you can start again better prepared.

You should never have to apologize for having AS. That's like apologizing that a comet hit you, or that your legs were amputated, or apologizing for having cancer. It's not even relevant to your relationships, even beside the fact that it may have played an important role. The same thing could have happened to anyone experiencing any of those "freak" things. You could have had cancer and done the same things because of physical illness and resulting symptoms, but now you know, and you can deal with it.

So, please consider yourself empowered. You are a gifted human. You have another piece (maybe a big one) that allows you to understand who you are and how you work. With that knowledge you can start compensating for your faults, and using your best qualities to their full advantage.

γνῶθι σεαυτόν - Know thyself

Don't resent being intelligent... a lot of people probably envy you for it, even though it does mean you stick out and don't really see eye to eye with most people. I have this problem because my skills are all heaped up in the areas that make you good at academics; I have an insatiable desire for data; and that means lots of people perceive me as very intelligent. (Many smart people don't look smart, but people often over-estimate me because of my good verbal skills.)

As a result am interested in a lot of things that people think are above their heads... physics, medicine, that kind of thing... it results in a bit of trouble when relating to typical people. (The funny thing is that a lot of those subjects aren't as difficult as many people make them out to be. I think the whole country has math anxiety, at least, and possibly some aversion to science, too. Stupid public schools. Science really IS interesting... then they ruin it for everybody by turning it either boring or cliched.)

I don't think that intelligence necessarily has to present a lot of social problems, though, unless you are a supergenius--the sort that graduates from college at 14, not the normal sort of being good at school that just makes A's and maybe skips a grade. The problem of not being able to relate to people isn't really that bad--not if you find the people who have the same talents and interests as you do. I'm taking engineering classes, and a lot of my fellow students are a lot like me. So are the few friends I've made in my lifetime--either eccentric or intelligent or both, and always people who shared interests with me. Having things in common with people helps with friendships, simple as that; and there are plenty of people whose love for learning the public schools didn't manage to ruin.

You'll probably feel at home with other Aspies--we tend to be experts in the subjects we're interested in, whether or not we're any good at school.

Oh, another problem with intelligence: Not learning how to study until you hit college, and failing stuff because you think it's like high school! Really, somebody should warn kids that it won't be easy forever...

music_for_airports, I give you a virtual hug.

You sound so much like a man who meant and still means a lot to me. I gave him a book about a couple in an AS/NT relationship and when he finished it, he told me that he thought everyone processed thoughts and information the way he did.

The difference between him and you though is that he does not want his family to know that he has AS. The reason he gave is that he does not want his aged father to know because his father might think he has AS himself and will not be able to handle the idea. I told him that I don't think his dad is AS, but this didn't persuade him otherwise.

My relationship with this man did not last, but I so wish he would tell his dad and the only aunt he's close to. They are so confused with the breakdown of our relationship and have been worried by his actions. We live in the US and his family is abroad. His dad told me after our breakup that his son is very selfish and has no idea what is love and how it is to love. It broke my heart when his dad said this because his son loves him so much, but is just not able to show or say it.

I am not in a position to "out" this man whom I still care so deeply for, but I just wish he would reveal his AS to them so they would understand him better and have an explanation for all of his actions they found hurtful. I don't want his father to leave this world believing that his son did not love him.

But it's not up to me.

I'm glad your family and others close to you know about your AS. You write so well. I agree with one of the posters who said that if you cannot say how you feel, express your love for them in written word. Communication is key and I hope you get all the support you need as you enter this new chapter of your life.

Welcome aboard.

For many of us, being diagnosed is a relief but it certainly can bring on mixed emotions, at least for those of us who are diagnosed as adults.

In my case I was very relieved to have an explanation for why I was "different" (for I'd felt different for as long as I could remember, and others around me always seemed acutely aware of my difference), but of course there are always the issues of who to tell, how to tell them, etc. In my case it was further complicated because my therapist had decided I had AS but neglected to tell anyone (either me or, when I was a minor, my parents), which brought on a whole other set of feelings.

Like you, I have always had trouble making friends as opposed to merely acquaintances. I still don't have any close friends but I'm working on it; it is really not something that comes naturally for me though. (On the other hand I have dozens of acquaintances - hundreds if you count people I know only on the Internet.)

I haven't spoken to anyone from my "past" but then as I have never had close friends or a girlfriend or boyfriend I'm not sure who I'd speak to anyway. Most of the people from my past probably don't remember me or if they do, I doubt they care.

If you are at all interested in reading more about my story see here and again, welcome aboard.