How My Diagnosis Changed My Life

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For ten years I have lived with the knowledge of having Asperger's. Ten years ago, I was happy and considered myself a normal teenager. But the moment everyone found out about it, bang! It's all over. To some people, Asperger's is the Great Wall of China, they can't see over it, around it, or through it, it's all they see, nothing more.

When I was younger, life was good. Sure, I had problems: schoolmates and a younger brother picking on me, tough classes in school, no friends, and not at all popular in school, class, or with girls. I never got angry at the little things like I do now.

Then one day, I had a pyschiatrist appointment in a city two hours away from the town I live. "There goes another chance for perfect attendence several years in a row," I thought to myself. I had no idea how much my life would change that day.

I forget exactly what it is that she told me, but I remember her mentioning something my parents and I had never heard before: Asperger Syndrome.

"What the heck is that?" I asked myself. I felt my stomache churn with worry and fear. "Am I sick or something?"

I had several more appointments with Darcia Evans. I hated it. It meant missing school and having more homework to do at home. I hated homework, but not as much as I would hate what just happened to my life. "How are the kids going to react when they hear about this?" I wondered. "No, no, no, this can't be happening!" My life wasn't anywhere near perfect, and it was about to go farther away from perfect.

The reaction of everyone else was unpredictable because I couldn't tell what would happen. When Jeff and a classmate of mine cracked a joke about Asperger's, I knew what I was in for. I had just become a new inmate of a global freak show.

"Welcome to Asburger, home of the Asburger," Jeff joked with a friend. "May I take your order please?"

"I'd like an Asburger," Joel said, "with fries and a medium coke please!"

Because Asperger's affected my brain, I knew I wasn't normal like everyone else around me and several even said so. "Why couldn't I be more like everyone else?" I wanted to cry out. "I don't deserve this!"

I remember taking a small square of paper used to write notes on, and writing the words, "Insert Brain Here" which I then taped to my forehead. I wasn't trying to put myself down, I wanted a normal brain so I wouldn't have to feel this way. Those who saw the sign laughed at me. I didn't mean to, but I ended up proving a point that day. People like me get no respect simply because people think there's something wrong with me.

Soon, classes of mine were interrupted by announcements. "Dwayne Anderson, please report to Judy Poole". Judy was my new tutor. I hated it when the announcements came during classes when I was enjoying myself: Mathematics, Home Ec Sewing and Cooking, and Language Arts.

"Great!" I muttered to myself in my mind. "Let everyone hear it! Now they'll all think I have a learning disability!" I could only imagine the words they whispered to each other, some were probably laughing at me inside at how I had been labelled "Mentally disabled". "What?" I asked myself. "Does that mean I'm stupid?"

Weeks turned into months. When I was told during one of my classes with Judy where my mom was in attendance that I would have to keep attending school until I was 21, I wanted to ask, "Why? Most kids leave school when they are 18. They finish grade 12, graduate and get a diploma."

Sadly, I would never have that chance. After only one month of grade 12, I left school for good. That meant no prom, no graduation ceremony, no diploma to receive in front of an audience. Often, I've felt like crying. My younger brother graduated the following year and even went to prom with his girlfriend. I couldn't help but feel left out. Thinking back on all my classmates and what's happened to them since graduation, I can't help but feel that I've hit rock bottom. Several times I was on the honor roll in the past, won awards for perfect attendence several years in a row. And in the end, I ultimately became the high school drop-out of my class. Several classmates of mine are married and started families while having successful jobs and careers, others are working, going to university, while I'm still stuck at home delivering newspapers in the morning and waiting for my first date, but for how much longer, I do not know (maybe a few months).

Many times I can't help but compare myself to everyone around me, including the family. Ten years after the diagnosis that changed my life forever, I've changed so much, but not in a good way. I don't need to drink alcohol to drown my sorrows, I just want to be left alone. I had dreams of my own, but for years, I've lived each day as if nothing mattered.

Asperger's didn't change only me, it also changed everyone else in the family. They had never heard of it before. But now that someone in the family has it, they've started watching and listening to programs, reading articles and buying books about it, and telling people about it on the phone to others. And every time they try to introduce me to someone new, it's someone with Aspergers. I'm sick of the way they've let it take over their lives. It's as if nothing else matters. I've had it!

To make matters worse, they won't let me do anything on my own, not even simple tasks. They don't offer to help, they insist, without even letting me have one chance to do what I can on my own. I can't stand it. They make me feel like I can't do anything on my own. No court judge declared me unfit to take care of myself!

In times like this, I was grateful to have a few close friends. Sadly, neither Tiffany nor Krista live in the same town. Tiffany was the first true friend I ever had. We met over the internet and we chat online alot. She's in college now, even planning to write books. And Krista is just as troubled with life as I am. When she was in town working in dad's store on Saturdays, I would take a little time to visit her. The first Christmas I had known her, I gave her a christmas card. Last christmas, I gave her another card. Whenever I'm feeling down, I give her a call. It makes me feel better to have someone to talk to.

"I feel like you're the only person I can really talk to," I told her during one of our phone chats. I really meant those words. I can hardly talk to my parents or other family members anymore. Usually I push everyone away. After the way I've been treated for years by the kids in school even before the diagnosis, I can't risk any more hurts.

Krista and Tiffany were the only girls I've ever shown interest in as friends that felt the same way. Every other girl wanted nothing to do with me. "Why?" I asked myself. "Why don't they want anything to do with me? Is it because I don't have a car? Money? Or is it because I have Asperger's?" I've often feared that for these reasons that I would never get a girlfriend. When I do meet a potential girlfriend I hope she doesn't think, "Aspergers? Oh my, you're such a weirdo!" I have the same worry everytime I meet someone new. How will people see the real me if the family tells them I have Asperger's?

Although I took a home course from Stratford to get my high school diploma, it wasn't the same as a real graduation ceremony from school, not even close. There was no audience to clap and cheer when I received the diploma. Although it's something to be proud of, I must do more.

Even though I've written and published three books, I know none of them will ever become best-sellers. Although they are popular in my hometown and I've become a bit of a celebrity, I still feel unsatisfied. One day I'd like to write a book not only becoming a bestseller, but one that may become a movie.

So much hardship has happened to me over ten years since the diagnosis. What the hell? Having Asperger's is not a crime, so why am I being punished? What did I do to deserve this life? It wasn't supposed to go in this direction. That's how much the diagnosis changed me.

More than anything, I just want to put these last ten years behind me and move on with my life. Soon I'll be relocating to another city, one where no one knows about my Asperger's. It'll be a clean break for me, a fresh start.

Welcome to WrongPlanet. When you leave your old city, you can take us with you!

Merle

Exactly how I feel.
Aspergers is just a label that ruins my life to me.
As long as in the future I don't tell people I don't have aspergers, thats the only way I'll be able to be taken seriously.
People just suddenly 'assume' that you need so much extra help and that you don't understand things.

I am called non-sociable in school because other kids avoid me because of my Aspergers.
I just wish I was NEVER diagnosed.
All it did was cause trouble.

I guess because I just now learned what aspergers is, I pretty much accepted it and moved on. I dont really care what people think about it, but Im past the point of being teased because of it so I guess its much easier to deal with.

Oh how original. You should just ignore people like that.


This is wrong. Just tell your family you are capable of some things. My family treat my autism like it's no big deal.

You are still the same person even after your diagnosis. Forget the label if you want and live a normal life. For those with mild AS I think there is no need to tell people you have AS, because people just will just think of you as another disabled person, one to made fun of or ignored. I'm starting to realise that my friends and family just don't know how to deal with it, so it's better to keep it to myself.
I'm sorry you had to go through all that. I still struggled through school as an undiagnosed autistic. I had to go to a college to complete high school. I dropped out after year 7 and was home schooled, though my mother stopped after a year.
Good luck with dating. I did date once in high school but felt nothing. My first adult relationship was a bit better, but I was still no good at it. I don't think I will date for quite some time.

You sound like you don't have problems with large crowds and even express a desire for them with your graduation! You also make no mention of meltdowns or shutdowns. I encourage you to read stories like this: http://oddsendsandautism.blogspot.com/2 ... tdown.html

For those that have Autism and get overwhelmed, it can be a blessing for people around you to know of the disorder. As people (especially police and such) can become more aggressive and try to control you - only to overstimulate you and make you get into more trouble. See this training video for Police: http://www.saharacares.net/saharacares/ ... ares08.htm Admittedly that video is for the very obvious autistic, and I don't like how they emphasize the obvious symptoms. However, there are AS people who have meltdowns, even undiagnosed, where the "give space and slow down" approach is better than being aggressive. Frankly, the police should treat all people like this - but I guess they have to deal with those high on cocaine and other stimulating drugs. So, like the military, many police are trained to use "overwhelming force" to subdue those acting weirdly.

Many with AS don't seem to have this meltdown issue and strictly shutdown or internalize it - but it may be part of the reason that motivates people around you to be fearful. But to me, even if people have outbursts, those around can be educated with ways to disarm through gentle assurance, patience, and respect for need of space.

I can kind of understand how you feel, since I've had that label of autism put on me (though, I was never officially diagnosed, and it was only a suspicion of an untrained "doctor". If I had been diagnosed, it would have been a misdiagnoses), though, I've never had it applied to school to require me to have a "special" education. Some of the things they have done to you have mad

But understand this, life is 10% what happens to you and 90% how you react to it. Live by those words. Cherish those words. The diagnoses was only part of the small 10% of your life, but your initial negative reaction to the diagnoses and later events in your life, as you described, is what set you on that path of struggle. The problem isn't the diagnoses, it's the way you reacted to it. In all reality, the diagnoses didn't change you from your original self. You are still the same person you were before the diagnoses.

Don't worry about what people think about you. There will always be people who do not like you, and that's okay. Don't let it bother you. There are plenty of people out there that may love who you are

Before you move to that city, you have to change your outlook on life. Work on a world view that helps you stay positive, and at peace with the things you cannot change (such as your past, your diagnoses, and what people think about you). It will take more than a clean slate in a new city to get your life on track, buddy.

And remember, don't let your diagnoses define you.

Sorry if I am coming off as a little preachy, I tend to do that . I'm just giving you some advise as another human who's gone through similar bouts of depression.

I don't think that 10/90 equation comes out the same for everyone. There are clearly family issues that influence people (molestation), etc, etc. Yes, yes, people overcome all the odds, but the odds are there.

And reacting isn't all in your head. But my study of life shows that hard work nor smarts are a promise of success. Here in the USA the positive attitude "American Dream" and so much "think your way to prosperity" has created more unhappy people than happy.

Comes to mind: http://www.youtube.com/watch?v=lRjItDLnAwc

I say a more complete version of your positive intentions... A quote of a person who traveled the world and researched humanity both past and present. Joseph Campbell:

"The way to find out about happiness is to keep your mind on those moments when you feel most happy, when you are really happy — not excited, not just thrilled, but deeply happy. This requires a little bit of self-analysis. What is it that makes you happy? Stay with it, no matter what people tell you. This is what is called following your bliss.”

that's just a quote, there is a lot he says to back that up.

I wasn't referring to the "American dream" kind of philosophy. There is no American dream. No, wait, there is an American dream, but it's only a dream .

What I'm referring to something much deeper than what you call success.

The 10/90 ratio isn't an exact ratio, it's an example to show how much the way you react to a situation has more of an effect on your life than the actual event itself. That's what I'm referring too.

Good quote, by the way, Joseph Campbell is a smart man.

I'm sorry. Sounds like people refused to let you be normal in any way.

I've known that I was autistic for most of my life. Fortunately, I have not had disclosure shoved down my throat, and my family lets me do pretty much what I want. Since I decided to disclose the fact that I am autistic, I have become somewhat a local celebrity in the local autism community. I'm sorry that this disclosure and all of these restrictions were shoved down your throat. I only hope that the books you write will bring you prosperity.

dwayne your not a loser! just look at how well written and intelligant you are. hang in there!

Thanks everyone! I feel like I'm welcome here as I've always wanted to fit in. Here it seems people accept and respect me for who I am, and I'm grateful!

I have the same problem with my life, unlike yours, I was diagnosed at age 3 with autism, but got rid of that diagnosis at age 10, which I did not know that until i looked at my records just recently. I started out the exact way a person with Aspergers started out, talking at 8 months, but had stopped talking for a while after my sister was born, but went to speech therapy and started talking the first day again, and had a very advanced vocabulary along with that. In 1999 at age 20, I got re-diagnosed with Asperger's, instead.
But unfortunately, back then people with aspergers got the same adult services(day programs, group homes, etc.) as autistic people. Even though I only needed career, and emotional counseling, I got placed in an autism agency that only deals with people with regular autism, who can not be independent and need life-long care, behavioral and/or institutional like care, which a person with aspergers needs independence and no any of that institution-like stuff. I was treated like I was ret*d by everyone, including my family. At the same time I was misunderstood by everyone because they were confused(and still are) because i am so intelligent and independent, but at the same time because I am stuck in the agency, they need to treat me like a ret*d person. It is a very confusing situation.
Ironically, when I was 10 years old up until i was 18 when I graduated, I was well-rounded student, who was so independent, that I basically had all of my adult independent skills by age 13 and I was treated with respect and I was treated like the smart person i am. The only problem I had was that everyone was over protective when it came to curfews, and where Iw as allowed to go. Then, I had a problem when I was 20 because I did not have a successful job, I was working in a wal-mart with people(worst job for an aspergers person) because my mom said I had to work. I had to leave work, so i went to school, did well, but did not know what to do and wasted money, so i quit. The day I went to my mom to tell her, I panicked and I flapped, cried, yelled and had a tantrum, all because I was afraid of what she might do to me and also that I had failed her. I started to say I needed help to figure out my life. Unfortunately, she found help at an Autism agency(which also runs the group home I live in and the day program i was in). Even though the counselor at the Autism agency diagnosed me with asperger's, but when she went to her bosses(the people who run the agency), they told her that I should be in it. Now I am paying for it.
Well this is my story. Just hang in there. I am finally getting out of this group home and life, going back to school and getting the help i should have gotten, where I see a counselor(not in the agency), going to school, and figuring out my life. It took a lot of letter writing, convincing, and a ton of hard work, but I am finally getting out of this overprotective life, with Aspergers and all. Good luck.

Agrees.

It's not like you have much say in the matter either if you're only a little child.

Things were bad for me socially, but my past dx made these issues a billion times worse. Bringing attention to the issue just seemed to aggravate the problem even more. People assumed that I couldn't do things because they kept reading "can't"s in the criteria.

It's caused a rift and arguments in my family, so people who love and care about me are telling me "not to label" myself because of the stigma and bullying that it would attract. Some psychologists also agreed that the label was hurting me more than helping me, even though I still had social difficulties.

Flashbacks of people avoiding and being condescending to me for having a label have really screwed me up in later life.

I watch this thread with interest. For those of you that don't know me, I went through almost 60 years with out a diagnosis. Other people made their own lables and slapped them on me, 'ret*d', 'crazy', "idiotic" "disruptive" "naive" "stupid" "rebellious" " wayward" "loser" "big sigh (with or without an eyeroll)" and the worst - two people looking at each other in a 'knowing' way (with or without a nod). I was just as rejected and sidelined and bullied and abused as any of you with a diagnosis.

it's not the diagnosis, because we are the same with or without it.

it's just us.

Merle