To get diagnosed or not to get diagnosed? If so, what for?

Post Reply New Topic

For years, I have been suspecting having Aspergers syndrome but hasn't been diagnosed. One of the reasons is that diagnosis most likely costs money and is unlikely to be covered by insurance. But there's another reason why I'll think twice even if I do find a free diagnostic option. Too many people with confirmed Aspergers seem to be quite consent with it and not even willing to conform to the rest of the society. At the New York support group, someone once said: "I don't have Aspergers more than we all have maleness or femaleness. I am an Aspie". Another member on the group makes sarcastic remarks about neuropypicals: "Don't act like an NT" she once said. When one new visitor told the group that he is, in fact, married, and for a few minutes we discussed his relationship with his wife. "If she doesn't understand you, don't blame her. She's only an NT, after all", one lady said to him, which made me think that these people look down at those who are lucky enough not to have Aspergers. I asked the group a hypothetical question: "If certain treatment becomes availabe that will cure you of Aspergers completely, would you go for it?". To my surprise, a large part of the group answered no. They said Aspergers is part of who they are, so they're not willing to get rid of it.

Again, I haven't been diagnosed offically, but I have certain reasons to suspect myself of having Aspergers syndrome, so I won't be surprised if it turns out that I do actually have it. But my approach to life is diametrically opposite to what I just quoted. I'm determined to live a normal life as a normal person: earning enough money to support a family, getting married to a good-looking girl with pleasant personality and cultural background compatible to my own, raising kids, and so on and so for. If Aspergers (or some semblance of it) impedes my capability of getting all that, then, by all means, I'll only be happy to dump it as soon as possible. And if medical treatment doesn't exist, I'm willing to work really hard on my personality and behavior, thus bulidling something that most other guys have been given as a free genetic handout. If you think about it, this is actually a great blessing to enjoy the results of your hard work - as long as it becomes a reality. If I do have Aspergers, I would only considered it a certain personal challenge (which it is) but not more than that. It's not part of who I am.

Now, I want to know how I would benefit from getting myself diagnosed. The diagnosis may only be worth it if it enables you to receive proper treatment and get yourself rid of your Aspieness in one way or another. But it also have a negative side. If anything, I have already realized that I possibly have Aspergers. This alone is enough for me to take action and work on my behavior. However, knowing for a fact that you have this psychiatric condition, and having official documentation that confirms it, could do you more harm than good by undermining your self-esteem. I even suspect that those people who display this grandeur of being "Aspie & proud" have actually created this idea for themselves to compensate for the lost self-esteem. If that's the way the Asperger diagnosis affect people's mind, then I'm staying away from it, period.

Maybe I misunderstand something. Is there anyone on this forum who have been officially diagnosed with Aspergers (or any other ASD) but still have a normal life (particularly in terms of dating/marriage, prestigious jobs, etc.)? Is there anyone here who feel that the diagnosis actually helped you get rid of much of your Aspie-related issues? If such people exist among the forum members, I would like to hear from them.

It's the community that makes people think that certain way and not the diagnosis. If you do get diagnosed then you can make sure you don't get ensnared in it.
This mindset is the same for ADHD, dyslexia, Bipolar (maybe), blindness and the deaf community. Do not want cure. I ain't changing for anyone. They should change.

I live by the belief that to get diagnosed with a disorder you need to be impaired for it. I see my GP when I have an unexplained illness or something I need treatment for, not because I want to make myself feel superior to others that don't have chronic pain or are coughing up phlegm. People here might be insulted that I compared it to an illness.

I think a problem is a lot of people have it mild and have strengths in certain areas such as memorisation, art or in maths. They're turning against the society that says it's wrong to be that way and wants them to be more like it.

I have autism but have certain strengths too and severe impairments. See I don't even go by Asperger's any more because of my difficulties.

I have ADHD and I medicate that any chance I get. I'd do the same for autism symptoms. Autism does have certain symptoms that can be useful though when you get a handle on the more impairing ones.

I'm pretty severe so I don't have many friends, or a relationship. I think it'll be a financial mistake to have children, and I wouldn't want to to raised by me. I try to turn my obsessive interests into something practical though. There are some things I know science can't change yet like my sensory issues. I'm no longer a little kid so I can't get the same treatment. At the moment I can't work because of those sensory issues.

I'm still trying to get by though. I know that non-autistics can experience things differently to me and I have to remember that. I've got a good grasp on it - the way they think. I'm not saying I'm better but it's important to learn how they think differently so I don't get offended or confused by what they say and do.

People might also say that you'll never be free of AS. I don't agree of course. You can decrease your symptoms to lose a diagnosis and should only be diagnosed when you want treatment or some special services.

I've kind of given up on getting better. Tis hard. Stressful. Depressing. Anxiety provoking hard.

Nothing wrong with being proud of who you are. If who you are is someone with aspergers that shouldn't change. I'm not sure why people should be "willing to conform to the rest of the society" as long as they are happy and not infringing on the rights of others. I do agree that there seems to be some degrading remarks about people that don't have aspergers. I try not to make such remarks.

You sound capable enough and if you want a family and a house there is no reason you cannot attain these goals with hard work if you have aspergers or not. Most people have to work hard at life and have their own problems, difficulty is not unique to any specific individuals.

You say that aspergers, if you have it, is not part of who you are but I don't see how that's possible. If there are traits you have that you would like to do without then you can certainly work on changing them.

It seems that you might think that getting a diagnosis would lower your self esteem because you view people with aspergers as being something less than "normal" people. I don't believe this is true and I hope this does not keep you from seeking the truth what ever it is and trying to be the better person that is sounds like you want to be.

Here you answer your own question. As long as you are happy and genuiely (I repeat, genuinely) proud about the way you are, there's no need to please others, even if those 'others' represent the majority. The reality, however, is that being accepted by the general society makes a significant (perhaps critical) difference in making you happy. And the odds are that Aspergers Syndrome (or, to be more precise, the behavioral/personality characteristics associated with it) is exactly what stands on the person's way towards social acceptance and, consequently, to being happy. So, instead of making himself believe that he's a Proud Aspie (while in reality he may be very bitter), it makes more sense to learn how to reasonably (I repeat, reasonably) conform to the society's standards. It's not good to force upon yourself all the garbage the society enjoys if you don't enjoy it. But behavior-wise, yes, conforming in a positive way will only help. Of course, if you're surrounded by criminals or by sexually promiscuous segnment of society, you shoudln't conform to them. But as long as the outer socity is normal, by all means go for it.



Even so, it's not a determining part of my personality. Everyone has stengths and weaknesses. And Aspie behavior is seen by the society as a weakness. So, instead of being proud of my weakness, I prefer to fight it privately, rather than loudly declaring it as my strength.

I wont say that I am immune to what the general public thinks of me but it is a very very tiny part of my overall happiness. I do of coarse care what friends and family think but I tend to associate with open minded people. I have only a small amount of concern for social acceptance but I don't think there is anything wrong with it if that's what you want. I haven't rejected society or anything like that.

You seem to focus on only the weaknesses of people with aspergers. Perhaps you should look at some of the ways it allows people to do amazing things. I know it affects everyone differently but many attributes that are held in high regard are associated with people with asperger.

It is sad that some people are just not mature enough to respect people. It looks like classic xenophobia and can be related to social phobia. This is the same thinking as in men vs. women, white vs. black, etc. Aspies can be very intelligent and knowledgeable, but that doesn't make them immune to this. It's the question of maturity.
I believe any "treatment" is not possible. It's genetic. You would have to rewrite your genome and go again through the whole development process. It's like killing one person and building another.
I like my Aspie-ness and wouldn't trade places with anyone, because I like who I am. And I've worked hard the last 14 years to be who I am. I'm proud of it and I'm proud of being an Aspie. And I have NT friends and they are great people. Usually not typical, interesting and inspiring personalities.
I believe everyone have the ability do define oneself. And you can be a great person or a crappy person, regardless of being women, black, homo, aspie, or anything else.

Good for you. Determination is a key. Remember that sometimes in life there are times when you just hit the wall and you desperately want to know why. There is no guarantee that you'll be able to go further even if you know the answer. Sometimes you just hit your limit. If you have Asperger's it changes the way you perceive the world, the way you react to stimuli, the way memory works, the way you communicate and the way you process. You may learn to act, to fake it, but it will be never natural and always be exhausting. There is also question of secondary issues as depression, anxiety, phobias. I know this doesn't define you, but it affects you.

I just love when people "explain" everything with low self-esteam. /sarcasm
Diagnosis does not universally turn people into xenophobes.


I'm not yet officially diagnosed. Finding a specialist in my country is a difficult task. But I strongly believe my hypothesis is valid. I have pretty much normal life, I'm with a intelligent and good looking girl. I'm doing masters in CS and already have proposition of well payed jobs. I have friends. I go to parties when I feel like it. I'm not the most popular guy, but I don't mind.
This was possible by years of self-improvement long long before I even knew what AS was. I just knew I have weakness in social stuff and worked hard to change it. Aspies tend to strive for perfection, so it's kind of ironic that I found strength in my weakness and worked hard on AS related issues because of an Aspie trait. I'm still far from perfect, but I feel a much better person than in high school.

I hope my response didn't sound pessimistic. I wish you very well and good luck.

There is also a widespread belief that Asperger women (at least in America) have it much easier than men in terms of dating/relationships. That's why it may be that you don't feel the gravity of the issue as much as I do. I understand that in order for me to get a relationship I'm looking for, I must perceive myself and be perceived by others as normal.

I'm an Aspie girl and I had a lot of difficulty finding a good relationship. It don't think it's necessarily true that Aspie girls have it easier in that domain.

Also, I think Aspie pride is great, and I have recently been feeling some of it for the first time, but I do try to fit in with NTs and to function at my highest ability. One can have Aspie pride without sacrificing the desire or effort to fit in with others. For example, at school, I try to fit in, but at home and with close friends and family, I embrace my quirkiness most of the time.

Hi,
I am not diagnosed yet, but through online test and my behaviour, especially through childhood times makes me 100% certain that i'm an aspie.
I found a nice girl and managed to be normal enough for her to marry me. (even though i hated to get married and get all attention fom loads of people for a whole day!)
I dont like to brag, but I am good at drawing and have been so ever since I was a kid. Intense focus on this talent led me to a top job in a major worldwide company. I designed tons of stuff and enjoyed it, but I could never get used to the meetings and presenting my stuff to the big bosses.
I have two kids and a nice house and two cars.
My wife is very understanding and have adapted to my strange behaviour. This have resulted in almost no close friends, no phonecalls, no visits and a two digit number of friends on my friendslist at my Facebook profile.
I last spoke to my best friend 10 days ago, and my second best friend about 8 months ago.

I think aspies could have a good aspie life with a flexible partner and if you find a way to focus on your talent and make it your work. Having read many posts on this forum and online articles, focus onspecific interest is our major asset.

The only problem I can see in a realtionship + kids, is that I personally avoid crowded places, so restaurants, theme parks and ordinary holidays is terrible for me, but very important for my wife and kids. I use one year to "man my self up" for three terrible weeks of where I try to survive all the fun my family desperately needs in a Holiday and need 1-2 months to recover.

So, there you have it. An aspie life with wife and kids plus top job is possible, but it drains you and you have to be prepared to work hard for it and on top of that be prepared for impulsive and sudden changes in your daily routines.
Nothing comes easy, especially for an aspie.

Just need to ad; today i'm 100% disabled because of a failed cancer operation in my stomach. If it had not been for this, I'd still be working. But still married after almost 20 yrs and the kids are almost adults, still two cars and still living in a nice house that will be 100% mine in 18 years.

Last edited by Konstans on 30 Mar 2012, 8:29 pm, edited 1 time in total.

HA!

Well... I'm a woman with Asperger's Syndrome. I was officially diagnosed at 16. I, now, have several degrees, and work in the science field, and maintain a contract with two government agencies. One of them... they're not so happy about the AS because 1. I tend to be *very* blunt, to the point, and have absolutely no regard for title, and 2. they can't just fire me because of our lovely civil service laws HA! The other LOVES me because 1. I tend to be *very* blunt, to the point, and have absolutely no regard for rank, and 2. no one else can stand me and won't hire me. HA!

I have AS, and today my strengths far outweigh my weaknesses, and that was a choice. I made my ability to recognize patterns work for me, my ability to calculate, analyze, and ruminate all enhance my work. At 14, these things left me quivering in a corner, curled up in a ball - sometimes being kicked by peers and students. Today I'm my research is being used to help people.

I still have weaknesses. I'm extremely sensitive to temperature, sound, light, noise, and movement. I've learned to compensate. Some days I choose to stay home, I choose to avoid certain situations, I choose to not get involved, and I choose to act or react. I don't allow my environment control me anymore. I still have Autism.

When people interact with me, they know I'm "different" or that "something's up" with me. I have a hard time allowing people to deceive me. I have a hard time making eye contact with new people. I don't do things "normal" people do, like shake hands because it's "the thing you do when you meet someone", or say "I'm fine" when someone asks how I am. I also don't ask how someone is doing if I don't have time to really listen. People know I'm "different" from them... I get distracted *easily*.

People don't need to know I have a diagnosis. It's no one's business. Just like it's none of my business what someone thinks of me. I have a diagnosis that I've pulled out, twice, and only twice, because I needed to let people at work know that no, it's NOT okay that you turn on ever freakin' florescent light on in MY lab when you walk in. It's NOT okay to tell me I have to wear my badge around my neck, and it's NOT okay to force me to shake hands with the new guy. It's NOT okay to tell me I have to make eye contact, either.

More importantly, it's not OK for you to have discussions about how weird I am to my co-workers - or anyone else - and it's not okay to treat all of your employees like we're commodities, and not individuals with individual needs.

I am not defined by my diagnosis, I'm defined by my contribution. That was a choice I made, though, because I wanted to be an intelligent woman of science that could make people interested in me because of my brain size and not my tit size. I'm not proud of being an Aspie, I'm proud of being ME! I'm a proud woman, who happens to be a scientist with Aspergers.

You are the choices you make.

Whether you choose to go after a diagnosis, lay claim to the label, or just ignore the whole damn thing, just remember that it's all on you what you do with it.

_Bloom

If they ever put englsih subtitles to a Swedish/Danish series called Broen/Bron (the bridge) and sell it as a DVD, you have to watch it! You would love it, Bloom!
The main character, a woman detective, have Asperger's and this leads to simmilar situations you describes. Handshakes, daily chit-chat is non-existent, only weird situations where the detective never is embarrased.

She is soo cool about her job and coped her problems in a way that made her very attractive and interestingly different. The series lead to a small avalanche of interest in aspegers here in Scandinavia.

I urge everyone with and without Asperger's to see it if they ever start selling it on DVD with subtext. (unless you're scandinavian)

HA! I am a collector of these types of movies! Thank you!

Yeah... the only time I tend to become embarrassed is when it comes to NT men/flirting. Or... when my staff is poking fun at me, and I don't get it until someone says something. They're lucky I like them. Interestingly, they don't let *anyone* else poke fun... they're very protective.

_Bloom

I bolded the things I feel are what I take issue with in what you are saying.

You make it perfectly clear that to you, society's approval is required for your personal happiness and fulfillment. That’s perfectly fine I guess… But you go so far as to indicate that if society claims something is so, it is so. That’s hardly true, and I’m sure you know that. Just because society says some behaviors are a flaw or weakness, does not make it true. For the most part much of society things we are all mentally ret*d and savants with numbers too, is that true? Hardly.

My issue is that you seem to be making the case that this is universally true; That for everyone, society's approval is a must for personal happiness and to be proud of who you are. You also seem to be making the case that Aspergers "behavior" is directly responsible for not being happy. You also make the claim that someone who claims to be proud of who they are in accepting their Aspieness, they are in fact not, but self deluded or lying, and are bitter instead...

Maybe you have met people that are bitter about their condition and project their negativity. That may well be the case. Maybe you know someone(s) who are not happy in life, and maybe you suspect it is direct response from social ostracism. I'll grant you all that. Even still, you should refrain from claiming that social acceptance is required for personal happiness. Because it isn't. In my opinion (underlined for emphasis on how to phrase this kind of statement), I think one's personal happiness should come from a source that is internal, and not dependant on external influences. In my opinion, one can only truly be happy in life if they decide who they want to be, or rather embrace who they really are, and stay true to themselves at all costs. And that by doing that, by truly being proud of who you are, in your own judgment, can you find happiness that can never fade. I have, I know it is possible. And the happiness I experience doesn’t change if come next Tuesday, all my neighbors decide I’m no longer good enough because I didn’t mow the lawn, or my window siding should have a new paintjob.

I don't know...maybe for you what others think of you is the most important thing in your life. But to me...that is kind of sad. I personally could never find joy in being accepted by society, that to me is just a shortcut, a crutch. Much like finding personal value in how large your bank account is, or how well your sports team is doing, or something else as trivially irrelevant to who you are.

The fact you think that someone simply is incapable of being proud of who they are, even if they have a diagnosis of autism, and that any perceived pride they may display is simply masking inner bitterness towards society....I don't know, I find it deeply troubling, and am a bit concerned about it. I cannot quite pinpoint what is worrying me so much about that attitude at the moment, but I am concerned about it all the same...

I don’t know what I hope to accomplish with writing this, I guess I’d urge you to take a second look at your conclusions. Maybe try to see another way to interpret what you’ve experienced. There is usually more than one way to see things…