Saturday, 19 February 2011
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I Wish I Was Never Diagnosed With Aspergers
I wanted to share this post on a public forum to see if anyone felt the same way with their conditions and experience the same trouble.
When I was really young and growing up, getting through grade school and whatnot, my mother had me take days off from school just to see certain specialists. I think this all began when I acted up all the time in Kindergarten. My overly obsessive and overbearing mother wanted to see what was wrong with me. At the time, I just took it all at face value; I didn't care or wonder why I was going to these meetings and saw it just as an opportunity to get out of school, where I didn't want to be because I'd rather be at home playing video games or watching Nickelodeon. Tying into that, I think my mother also found it strange that heaven-forbid I wasn't into playing sports back then, even though they tried to get me into sports I hate playing to this day (i.e. soccer).
I was diagnosed with aspergers in 4th grade, but things started hitting me hard as soon as I got into middle school as I realized how socially-avert I was. From there, things just got worse. The knowledge that I have aspergers and knowing what it is has really taken a toll on my life. It didn't help that my mother had to etch in my brain that I have it and continued to make me go to counseling sessions in high school.
The reason why I wish I was never diagnosed is that I can never see myself as a normal, functioning person. I am always feeling negatively about my life because of it to the point where I would even list things I would rather have than aspergers, such as colon cancer, AIDS, typhoid fever, etc. At least life wouldn't be playing a joke on me then. I feel as if I am cursed and plagued by this "disease" to the point that it has given me suicidal thoughts. I mean, how can you live life when you can't enjoy what most others can enjoy because you're "disabled"? Like I can go through college and pass whatever tests they give me and get degrees and whatnot, but I can't land good jobs because I don't have ideal personal and communication skills. Likewise, I can never land a relationship, let alone a good one with a girl I like. But is it because I truly have bad communication and social skills, or is it the negativity that's etched in my brain telling me that because I have aspergers, I'm going to lose before I even try and shouldn't even bother? That's the first thing that comes to mind whenever I'm in a group setting or am trying to prepare for a job interview or career fair or even preparing to impress some girl: I have aspergers and thus I have a high risk of failure because I am by instinct socially inept, even though I don't have that serious of a case of it. It's like having a developed mindset that you could never curb your alcoholism or your eating disorders because you believe those things are a disease you have no control over. As a result, I keep making excuses for myself based mainly on the aspergers as to why I should be risk-avert, and I have developed this great negative attitude about myself, even though I know it's wrong to do that and that it's "all in my head".
I would like to write more on this, but I will leave it open to discussion.
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- From: Chibi_Son_Gokou@xanga
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Comments (72)
You sound like an intelligent, beautiful, caring, wise man. That's my diagnosis and leave it at that. Your mum just loves you. She didn't think of the consequences of her actions.... (Hey, maybe she has something too! ) Thanks for your comments. You have helped me decide what to do about MY son. Love him and appreciate him and don't make him feel like a freak.
Thanks for sharing your thoughts. I have a daughter with Aspergers. Unlike your mom, we just figured it out and she's 12. The school diagnosed her and now we are taking her for a medical diagnosis. We don't want a label for her, but we do want to know how to help her. That is the only reason we hope to get her diagnosed. I hope I don't ever treat her like she's a freak. I'm sorry that happened to you. You aren't a freak. You aren't a cancer. You were made just the way you were for a reason. We all have things we don't like about ourselves. None of us is perfect. I hope you can look at having Aspergers in a way that helps you understand yourself better, not as a harmful debilitating label. Focus on the things you are wonderful at, remember that you are loved, and be kind to yourself. Your mom was probably trying to help. She did the best she knew how. I'm sorry you were hurt in the process, but remember what she did was out of love for you. Hang in there.
Labels are like the cement the mafia encases those that cross them before dropping them at the bottom of the bay. I had some aspergers, some visual impairment, and some depression which eventually got worse and became full-on bipolar. Nobody saw me as disabled though (and I didn't see myself as such) for the first twenty six years of my life. I went through college and was working and living on my own despite emotional problems and eye pain. Then things fell apart. The endgame was I now see myself as disabled and am worse off for it (and I don't push myself much anymore).
However it's kind of a fool's game trying to pretend you don't have a disability when you do because society is SO PREJUDICED. So after enough interactions with society you start seeing yourself the way they do. It's really sad and I feel bad for your situation being set up with that label for life. If it is any comfort to you the world pretty much thinks almost everyone is a piece of excrement (unless you are rich and pretty). It's just that they are worse to people that are obviously different.
This is my biggest worry with my 6 year old daughter, I wonder if I am hurting her more in my quest to help her.
Hugs, Your Mom is doing the best she can, we dont get manuals, we dont get instruction books... sometimes I wish we did. It would make life easier for everyone.
Thanks for posting this, it opens our eyes to another point of view.
Hello. I am a mom of a son who has asperger's.
My son was diagnosed with asperger's when he was in Kindergarten; it was through the school district that this took place, believe it or not. They hired an autism specialist.
I don't have asperger's syndrome but I struggled with having a good social identity in high school. I used alcohol as the great social iron--it evened the playing field when you are drunk. I don't suggest this as the way to go. I bring it up because we were all struggling to find our way during that time.
As I got older, things got a little easier for me socially. And I see this also with my son. He has found the thing he loves, which is music, and that provides him with an outlet. He doesn't go out. He stays home but he is involved and people are friendly towards him. I am so thankful this is true.
I don't promise that things will get better quick. They will but not quick or quick enough. Remember that saying "One day at a time?" Forget it. Try to get through the next five minutes and then the next. Soon you'll get through the day and you may find something good out of it.
And as for your mom, I agree with the other commentators. She has worked hard and tried to do the best she can by you.
maybe you DON'T have aspergers. maybe your fucking mom-- caring, but nonetheless overbearing and obsessive as you mentioned-- is the one to blame all this on. you know, not EVERYONE likes sports or school when they're little. i know i didn't. some people don't like school and sports even after they've grown up! and, some people prefer playing video games at home because, quite frankly, it's interesting and they have a knack for it. dude, from the way this blog sounds, i'm almost convinced that you're a victim of your own subjective thinking. you're aware of a diagnosis given to you, but you're STILL questioning if you even really have it. what
isnormal anyway? what
definesnormalcy? the fact that you have a girlfriend/boyfriend, love school, love socializing, and are confident in everything you do? i don't see anything
wrongwith you if you're able to come up with so many logical questions.
My boyfriend as aspergers and I love him just the same. The only thing I miss is the deep emotional connection. We click, we love each other but emotionally he just doesn't see things and I give him a break because I know he has aspergers. The way I see it is if someone loves you they will look past it, I do every day.
sounds like you're having a lot of anxiety and self confidence issues here.
why won't you get a good job? you don't need to list the fact that you have aspergers on your resume.
I think a lot of it has to do with your negative thoughts.
I know its hard, but try your hardest to be more positive about things, if you're able to be on this website and write this and want feedback you've obviously functioning!
hang in there!
I hear what you are saying; when we believe we can't do something, it does (at times) seem to set us up for failure. The good news, though is that even those of us who are seen as disabled actually have some level of ability that the average person doesn't! The key is to turn to either God or a the creator of the universe to find not only strength, but also the reason for living. Perhaps, even in that search you will find that strength or trait that you have but others do NOT possess because they ARE "normal!"
I have come to a place after many years of struggle similar to yours to understand that I have many things that, because I AM unique, I can offer but others cannot! Even recently I have found a new program called "social thinking" (Michelle Garcia Winner-socialthinking.com) that is going to help me with communication and relationships. I am VERY excited about it! Even though I wasn't diagnosed with Asperger's Syndrome (but my son was), a label only has as much power as we give it. The real purpose of getting that label is to help get the right treatment. It doesn't sound like that you got all you needed, because of how down you are on yourself! To overcome anything in life, the focus should be on your strengths, and the gifts that the creator endowed you with. And the other stuff ( the weaknesses) can be overcome with both the deternination to do so along with the right help! Try looking up socialthinking.com and see if you can find someone near you who is trained in that type of helping.
You are not diseased. Assuming you were diagnosed correctly, you cannot help your lack of social skills, to a point. The benefits of being diagnosed are having specialists as resources, but mostly (in my opinion), it lets you know that you have a legitimate reason for not connecting socially the way others do. You can have meaningful relationships with Asperger's. My cousin's wife and son both have it, and they are doing quite well. All you can do is try to improve where you can, and don't beat yourself up when you don't quite connect socially.
I can't tell you that you'll get a girlfriend, but then again, I can't get a boyfriend and I'm a great person, and capable socially. You can land a great job, but your chances vary, depending on the field. Obviously, event planning requires more social skills than computer programming. The most productive thing you can do is to own who you are. If that means you are a person with Asperger's, then there is nothing wrong with that. It's just a different set of strengths and weaknesses to work with. Like it or not, you're stuck with you. You deserve to be happy.
Maybe I'm too tired to get this, but you're acting like the DIAGNOSIS and not the disorder is what you hate. Which confuses me. Either way you'd still have those problems, so it's up to you to deal with them, whether you knew you had it or not.
Secondly, I find people wishing to trade disorders/diseases/illnesses sort of selfish. It downplays the illness you say you'd "rather have". You can't say you'd rather have those things because if you had those things, I don't imagine you'd like them. I'm sure someone would trade with you any day, but without having both, you can't know which is worse, so it's ignorant to downplay other illnesses because you dislike the disorder life stuck you with. Very few people enjoy being sick, or disabled, or struggling, or just plain different, but we all have our struggles and I feel like it was rude of you to downplay other people's struggles by saying you'd "rather have _____".
That being said, a diagnosis is a blessing. Not being diagnosed doesn't mean the issues aren't there, but with a diagnosis you can understand what's going on with yourself and often get past things better as well as allow you to receive more specialized care for your specific issue. If you find that things get worse after you're diagnosis, they may not be illness related, it might just be out of despair. It can be hard to deal with, but at the same time, in the long run a good diagnosis does nothing but good things for you. I imagine this problem would have been the same for you whether you'd been diagnosed or not. I know plenty of people who aren't diagnosed with such things who are awkward when it comes to such things and so they talk themselves out of it, make an excuse... I imagine you'd do the same with or without a diagnosis. You'd still have the same issues, the same mindset... you are who you are, and if that's your way of dealing, you'd do it whether or not you had a specific place to lay the blame.
Ignorance is bliss in some cases, but with this, you should take the information and run with it. It's gift. You know. Not everyone who suffers from problems does know what's wrong, or what to do, but in knowing you can deal with this better. It's a blessing. Don't take it for granted.
Best wishes.
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It's an ugly label to have. This sounds petty, but I hate how people pronounce it "ass burger". As if there's not already enough of a stigma attached to it. I think sometimes it would be easier to not diagnose things and live as you are rather than be diagnosed.
With that said, it's just a label. 99% of everybody won't know unless you tell them.
I am another mom of a son with Asperger's, and while I don't know your mom, I can say that I'm sure she was only trying to get help for you - with a diagnosis and a "label" comes understanding and resources, and with the schools, that "label" is necessary to qualify any child for special services and extra help. I don't know if you needed any of that, but my son certainly did, all throughout his educational career, and it wouldn't have happened without the diagnosis - he would have just been considered a bad kid and fallen through the cracks. Getting as much help and as many resources as possible increases the likelihood that Asperger's kids will have a better chance of succeeding as adults...while it will never change who you are, it helps to pave the way in positive directions.
I'm not saying it has been easy...my son has struggled mightily...but he did get trained for something, is working, and found a girl who seems to be good for him, and they have gotten married. He has probably had more problems than many, although his Asperger's is rather severe and includes other diagnoses, because he has refused to accept the diagnoses and treat them accordingly, as a teen and adult, and has gone off on some very unproductive and damaging roads in the intervening years. The fact that you know is good - if you can get to a point of acceptance, and avail yourself of the help and resources available to you, then you can do whatever you can to head in positive directions - that is a gift!
I wish you all the best. Your life is full of possibilities...go find them!
Thank you for sharing. I admire that you can discuss this in an open forum; it's pretty cool that you can. I can't imagine what life has been like for you, considering that I don't have asberger's or anything of that sort, and to be labelled as such, I can't imagine the psychological repercussions of that. I'm sorry you have to face this in what seems like a world that doesn't accept you or your true talents, no matter what you pursue. But I know without a doubt that there will be someone that is willing both to listen, to understand, to empathize, and to support you. That's something I'm sure we all can relate to, and I hope you find this person or community soon. To you I give my best wishes, and I hope you can continue on with a positive perspective day by day, hour by hour, minute by minute.
Cheers.
At this point, if you can't get a job or have a relationship, it's your fault. I was diagnosed with Asperger's Syndrome when I was seven. That was in 1994, when it was relatively unknown, and there weren't many resources for children with autistic disorders. I'll admit that I had a lot of hard times, starting in fourth grade when my family moved four times in three years and I had to try to make new friends every time. It was hard to be that weird new kid, and it was hard seeing how easy it was for everyone else to get along, and not knowing what was different about me.
I found some books that my mom had bought, and I started learning about autism and Asperger's. They helped me begin to understand how it works, though I had to take that information and apply in largely on my own in order to get by socially. I made some very good friends in high school, and I had a few relationships with varying degrees of success from wtf to better than anything I could have imagined. And I have had steady full-time employment for the past four years.
That's not to say that it's easy for me to interact with people all the time; in fact, I rarely feel comfortable in social situations unless I'm with people I know very well. But I have made an effort to learn how people interact with each other, and it has worked out for me. I haven't gotten preoccupied with having Asperger's and how it sets me up to fail. At least you recognize that you've done that...so now it's time for you to do something about it. I've been depressed like you; I've wanted to die at various points in my life since I was 13. But you really do have the ability, if not the will, to help yourself out even if nobody else will.
@AGreatPerhaps@xanga - I agree with this.
I have no experience with all of this, but I have a few friends who have kids with autism. One woman has two children with autism.
I don't think there is anything wrong with going out to find the diagnosis. As A Great Perhaps pointed out, you'd still have the difficulties you have even without a diagnosis. Only, with a diagnosis can you get help, NOT be seen as just a troublemaker or slacker.
I can't imagine how difficult it must've been to be diagnosed as such. Still, nobody is perfect. We all have our issues. Some are just more difficult than others'. Don't see yourself as handicapped. Don't internalize the label. It sounds like you could use a professional who is trained to help those with Asberger's so that you can learn to see yourself differently (more positively) and how to work around the social difficulties better. I can imagine that should make a big difference. Good luck.
The effects of the diagnosis itself on the patient is a topic that is often discussed in upper level psychology and biology classes. Having it be "all in your head" doesn't make it any less of a legitimate concern.
You are not your diagnosis. You are a person who also has Asperger's, not just "an Asperger's patient". Despite being a psychological rather than a physical disorder, Asperger's does not define you. It is not who you are. It is not all you can be.
Reading your concerns about your chances of a successful career or relationship, I felt that you might benefit from reading "Look Me in the Eye: My Life with Asperger's" by John Elder Robinson. It's an autobiographical account of a man who has Asperger's and has found both love and a fulfilling career (stopping on the way at some awesome jobs that he enjoyed that I wish I could've had). At the very least it might show you that it is possible.
I do want to point out that you seem to have a misguided view of what it is like to be diagnosed with a physical disease, especially HIV or AIDS. I recognize that you're in a legitimately difficult position, but please realize these patients really do go through a lot. At the same time, they aren't their diagnoses, and neither are you.
Ugh, this is so relatable to me, and it's why I stopped seeking diagnosis myself. I found out it was probably social anxiety after I started taking an anti depressant. Look, this is not an objective diagnosis. Did they do brain scans of you? I am doubting that. This is not a concrete fate. You are perfectly capable of overcoming whatever intangible obstacles "specialists" have predicted for you. You can be who you want to be. TRUST me. Throw out the label, run the hell away from it, and find out who you are.
Personally I consider all humans to be disabled.  There is something we all can't do.   My son can play the piano.   I am musically disabled.  My son started reading at 3 years old with extremely little instruction, most others are developmentally delayed in comparison.   His communication and self-help skills are a disability in comparison to some other and an ability in comparison to some others.  We have expectations of people being like most people, but being like most people is not superior, its just easier (and boring).
I'm sure when the first primate spent more time on the ground than in the trees, the rest of the primates jumped up and down and screeched about his abnormality. When the first humans wrote, I'm sure the others humans screeched about this weird obsession--I'm sure his hunting skills lagged behind the others while he obsessed.
One of the most important survival skills in life is to be able to live with other people's opinions and to realize that their opinions are based on ignorance, mostly reasonable ignorance since its not possible for any of us to completely understand another person.  I'd rather we all learned to have an appreciative expectation of variety instead of the dualistic thinking of normal/not-normal.  But reasonably, that isn't going to happen univerally, a few people will learn, but I am going to have to live with other people's ignorance even as they have to live with mine.
Perhaps receiving the diagnosis, being labeled, and spending your life reminding yourself that you have this label - THAT is the problem. Maybe you've convinced yourself your whole life that your potential is limited and that there is something genetic about yourself you will ever be able to overcome.
Once you've been pronounced to have a diagnosis like this, it's very easy to fall back and not try as hard to overcome any social awkwardness or difficulties because you have this condition to blame any shortcomings on. As a result, the crutch you're handed at a young age prevents you from really trying or learning how to walk, you know?
@OstentatiousEloquence@xanga - @freetheleafcutterants@xanga - @ItIsAllGravy@xanga - Agreed with all of this. I have to throw out there, I've had many of the symptoms of "Asperger's" - repetitive/restrictive interests at one point (playing the same song or scene from an episode over and over again), talking and talking about subjects people didn't care to hear about, confusing the difference between how social situations work on TV and in real life, being socially awkward, you name it), but I learned to overcome all of that just by growing older and going through life itself. Plus, you meet TONS of kids who have those "symptoms" and not even because of any possible "disorder" - that's probably just a side of human nature.
I was never diagnosed in childhood because Asperger's didn't exist as a medical conditon when I was a child. In fact, I was pursuing a guidance and counseling master's degree when that finally happened. I will be 50 next fall.
I was a 'screamer' from birth until first grade. I had problems galore with social interaction all through grade school, middle school, high school, and college. I was always the weird one, the difficult one, the oddball, 'different'.
I have held MANY cool jobs that I was very good at (moved on when social tensions became tough) and have been married successfully for nearly 20 years. I even raised two children, both of whom grew up emotionally more healthy than most of their peers, both had fun with college (one with asperger's, the other a full-time step with fetal alcohol effect), and now both are in great relationships and running businesses. Neither one of them has had the angsty problems I had growing up, and they both credit me being the most understanding person through it all.
YOU can be whoever you want to be. You don't have to go around pleasing everyone and following a bunch of random rules. You create your world and yourself. I know this sounds cliche and simplistic, but in the end, if your perception of yourself depends on how others might look down on you and how you look down on yourself, how in the world can you survive that? Either you believe you have the right to exist on this planet, or you wimp out and start blaming the world around you for your misery.
I am curious about the suicidal thoughts. Are you on meds? Meds REALLY screwed up my asperger's and sent me spiralling into severe depressions. Got off the meds and life got waaaay better. Pills to 'fix' things are like bandaids, they only hide what you or someone else doesn't want to look at.
My mom tried to fix me all through my childhood, to the point of excessive abuse, called Munchausen by Proxy. I was poisoned several times with stuff from health food stores. I suffered toxicities that no child should ever have to go through. I have lived with a crippled liver all my life. If THAT is being normal, trying to fix someone else, I never want to be normal.
You are gifted with the ability to super-think. Use that. If this helps-- Synchronicity, Suicide, and The Eyes I, too, thought about suicide in my 20's. Big hug to you for writing out your feelings.
I also have big reservations about what 'normal' really is, too, but I won't go into it. Good luck.
@Coffee_Kaioken@xanga - I think it's overdiagnosed, and the medicines there are for it are crappy. Ten years ago most people had never heard of Asperger's, up until just recently it was a nonissue.
It's a good thing that people are more aware, because some people do need treatment, but at the end of the day we're all individuals. A lot of people might just have something they need to work on rather than being diagnosed with Asperger's. It seems like every other kid has it now, when really we know that's not the case.
I was never actually diagnosed with aspergers, but when I was younger, I was given similar treatments. Honestly, the question for me is what don't I have. I have ADHD, Trichotillomania, Hyperventilation Syndrome, a chemical imbalance, and we've recently discovered that I may have Depression. I'm not saying my condition is worse than yours in any sense, but I do understand how you feel, completely. I've been thinking over the exact same thing. The only thing is I'm glad I at least somewhat know what's going on with me and that my mom did have me do the counseling and psychologist sessions, trying out medications, etc. I've been doing this since I was three and back then I didn't have the reasoning to realize that there was anything actually wrong with me, yet still loathing myself. I knew something was wrong, but I couldn't figure out what and it drove me mad.
Now that I have some idea of what I have though, I do still have some of the very thoughts you were talking about. I have that feeling like I've been cursed with this, somewhat suicidal thoughts where I think it would just be better if I faded away and ceased to exist. I also know what you mean about how difficult it is to be in a relationship. I'm not looking for one now, but I'm convinced that a man would really, really have to love me for anything to happen (and the chances of me feeling the same way about him at the same time are also rather slim).
Anyway, the point is though, God will provide. Throughout everything, he's provided me with everything I need, even though it may not have been in the way I was expecting and I'm certain He will do the same for you.
I hope this has helped at least by knowing there are others who are having that same thought process. I'll be praying for you :)
I was never diagnosed because Asperger's didn't exist as a medical conditon when I was a child. In fact, I was pursuing a guidance and counseling master's degree when that finally happened. I will be 50 next fall.
I was a 'screamer' from birth until first grade. I had problems galore with social interaction all through grade school, middle school, high school, and college. I was always the weird one, the difficult one, the oddball, 'different'.
I have held MANY cool jobs that I was very good at (moved on when social tensions became tough) and have been married successfully for nearly 20 years. I even raised two children, both of whom grew up emotionally more healthy than most of their peers, both had fun with college (one with asperger's, the other a full-time step with fetal alcohol effect), and now both are in great relationships and running businesses. Neither one of them has had the angsty problems I had growing up, and they both credit me being the most understanding person through it all.
YOU can be whoever you want to be. You don't have to go around pleasing everyone and following a bunch of random rules. You create your world and yourself. I know this sounds cliche and simplistic, but in the end, if your perception of yourself depends on how others might look down on you and how you look down on yourself, how in the world can you survive that? Either you believe you have the right to exist on this planet, or you wimp out and start blaming the world around you for your misery.
I am curious about the suicidal thoughts. Are you on meds? Meds REALLY screwed up my asperger's and sent me spiralling into severe depressions. Got off the meds and life got waaaay better. Pills to 'fix' things are like bandaids, they only hide what you or someone else doesn't want to look at.
My mom tried to fix me all through my childhood, to the point of excessive abuse, called Munchausen by Proxy. I was poisoned several times with stuff from health food stores. I suffered toxicities that no child should ever have to go through. I have lived with a crippled liver all my life. If THAT is being normal, trying to fix someone else, I never want to be normal.
You are gifted with the ability to super-think. Use that. If this helps-- Synchronicity, Suicide, and The Eyes I, too, thought about suicide in my 20's. Big hug to you for writing out your feelings.
I also have big reservations about what 'normal' really is, too, but I won't go into it. My point in this response is that despite how you feel now about your life, you are probably going to wind up actually having a good adulthood, since you are already dealing with this stuff. I didn't even start dealing with these feelings till I hit my 30's and 40's, perfect for midlife crisis, ack! Good luck.