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My Perspective with Asperger's Syndrome: No Assisted Living Required.

Updated on April 7, 2011

A Unique Perspective ~ Some...language is involved

I say this is unique because lets face it. No two people are alike. That means that even someone with a diagnosis of whatever is as different from the last person with the same diagnosis as the rain is from the sun.

In 1996 I recieved the diagnosis of Asperger's Syndrome. I was fourteen and after having a little incident which got me kicked out of middle school, I was forced to see a psychologist for two grueling years. Therapist after therapist stuck me with label after label and then I met Dr. McVeigh, who decided that Asperger's was the right term for me.

He and my mother looked at me in anticpation of my reaction the day he "broke the news" as it were.

Now, years after this I hear from parents who say that they were thrilled when their kid was diagnosed. Now they knew what was wrong with their kid and they knew how to work on it. I hear from people with the diagnosis who say they were happy too because now they knew why they were so different from others.

Me...I was floored. How can you feel relief when someone sits there and tells you that everything you are, everything you believe in, the things you love are all because of some disorder that some German guy cranked out while working in a mental institution? It didn't stop there.

I was fully mainstreamed before high school but I still had to go to the resource room in my freshman year and the case worker was a domineering bitch. She had a say in what classes I took. Whenever she made appointments with my mother (who worked nights, by the way and therfore needed to sleep during the day)  she wouldn't keep them.

Boy that diagnosis sure helped out with my people skills, didn't it? Too bad everyone else didn't get a diagnosis either because it feels like their people skills were sorely lacking.

One of the main high lights of high school and middle school, however, was that if I was bullied by students it was somehow my fault. And now that I had this label to carry with me where ever I went (whether I wanted it or not) the teachers could just fall back and say, "Well of course it feels like you're being bullied, because you have Asperger's syndrome."

Freshman and Sophomore years, the caseworker, Jean, would try to set me up with "friends". She'd introduce me to other students in her resource room and stare like kids at a petstore watching a snake devour a mouse as she wondered why we didn't get along. You know, because as an Aspie I was so starved for friendship that it didn't occur to her that I might, you know, want to have something in common before she set me up on a playdate.

And of course the one time I made the mistake if introducing her to a friend I had made in middle school, she just gushed over it at the next evaluation meeting.

"Wow. Nathanielle has just come so far. He introduced me to his friend and I thought, wow, he came so far making a friend with my help and-" Yeah. She clearly had a lot of practice patting herself on the back which is why her arm didn't break in the process.

In my junior year I had a fairly decent circle of friends. I was no longer in the resource room so Jean mostly left me alone being too busy holding the leashes of her other students. And without intervention things came naturally. I finally told my guidance counselor that I didn't give a rat's ass what Jean thought, these are the classes I'm taking and that's final.

So, lets fast forward. I'm no longer in high school. I did a year in college and it was the biggest and most expensive mistake I made, but we won't get into that right now. It's important to understand how the first few years of my adult life went. Because after I decided I wasn't going back to college my mother decided she wasn't going to be living in Vermont any longer and I had to move out. Between jobs, however, I was forced to live with my aunt. Once I landed a job at Price Chopper I paid my aunt 100 dollars a month to stay in her trailer while I saved up for a place to live.

Now my aunt was well meaning enough. But she had the tenancy to tell EVERYONE about that I had Asperger's. Just like Jean and everyone else in school, they she saw the label and didn't see anything else.

So she would exaggerate the symptoms. She told my boss and she told a potential landlady when I was looking for a place. It wasn't her business to tell anyone but she felt I was just "in denial". Because of her interference they refused to train me on cash register at Price Chopper and I was stuck pushing a broom for two years.

My life drastically improved the day I moved out of Bennington. I lived in Burlington, away from the influence of people who thought they were helping me. When I got a job I kept my mouth shut about the Asperger's bit and people actually gave me training and responsibilities that I deserved. I got a job at Rite Aid and made supervisor in my first three months, because my bosses saw me and the work, not my diagnosis.

So what am I trying to get at? Well, a number of things.

First off, Aspergers is not Autism. Yes, Hans Asperger worked with autistic children when he "discovered" the syndrome. But while Asperger's has similar features to Autism they are not the same thing.

I'm quite capable of functioning on my own and I was always capable of forming relationships. Basically my personality was too different, I had a developed vocabulary, I had a few eccentric interests and yeah, this made forming friendships difficult. But guess what, that was who I was. Having some diagnosis didn't change that and it never will.

Yes, I have some trouble with anxiety and I like to have a routine to keep things in order. Who doesn't?

All Asperger's really is in the end is a word that describes a series of characteristics. It is not a "disorder" because while my life certainly has disorder, I guarantee you it was not Asperger's that caused it. It is not a mental illness or any other illness.

I don't have a job coach and I don't need one. I spent my life railing against anyone even suggesting the idea of medicating me, or sticking me in an assisted living facility where I'd be told to when to shit and what color.

So I hope this gives you at least a little insight into the mind of someone who does have the diagnosis of Asperger's, but does not like to be treated like someone with a disability. I want to be treated just like you would treat anyone else. This who I am. You can take it or leave it.

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    • profile image

      AndrewH 

      6 years ago

      I haven't been diagnosed but I am soon going in for diagnosis of aspergers. I think everything you said in this post is extremely important and right on the ball though, even though I've never had to deal with a "label". I never want to either.

      Julianne, aspergers is a spectrum disorder and so different "aspies" may have no symptoms in certain parts of the disorder or strong ones in a few places and minor ones in others. As such, different aspies have different levels of aspergers/autism. There is no black and white, and it's extremely individual.

      The main thing with mental disorders, and ones related to autism, is to avoid labels. Avoid labeling "symptoms" and boiling people down to a few words. Identify and focus on specific issues in your sons life and dealing with them REGARDLESS OF ANY DIAGNOSIS, or preconceptions.

      Anyways, this article resonated quite a bit with me. Glad I stumbled across it.

    • NateSean profile imageAUTHOR

      NateSean 

      6 years ago from Salem, MA

      Do you really believe that reading anything that's written about Asperger's will help you or your son?

      I'm sorry but no one has the answers for you. That's the reality of it. Having one diagnosis or another doesn't make it easy for anyone. It's just a word on a piece of paper.

    • profile image

      Julianne1985 

      6 years ago

      I agree with some of the comments here . However i live with my son who has Asperger's ,he is now 26 and the past 4-5 years have been the hardest with him. He is defiant, he has a difficult time minding his own business and by this i mean he is always more concerned about what other people are doing. He can be very violent and say violent things. He has behavior that is unpredictable at times and he is disrespectful.Now he has had intervention since he was 3 years old. He has had therapy for speech , behavior, cognitive and group therapy.I have devoted my entire time and life to helping him and it seems he has not gotten anything from all the interventions that have been provided. So those of you who have aspergers on here must be a lot more higher functioning because i have not heard one thing on here that relates to the diagnosis of Aspergers and my son was diagnosed with it in 1994

    • profile image

      Marco 

      6 years ago

      As a fellow Asperger's diagnosee, I know exactly what you're going through. I spent 1.5 years in an assisted living situation, one of the worst experiences I've ever had. Sometimes I think I would probably have been better off not getting that label slapped onto my back when I was 8.

    • NateSean profile imageAUTHOR

      NateSean 

      7 years ago from Salem, MA

      Certainly. She's 19 and therefore legally an adult. It's no longer up to you to decide what she does and doesn't have.

      If she's still living with you and doesn't have a job, that's another matter entirely. I'd focus on that rather than the Asperger's for now.

    • profile image

      Amy 

      7 years ago

      I have a 19 year old daughter that has Aspergers, but she is in total denial. She does not think she has it, period. She is very stubborn and will shut us down if we even mention anything to her about it. It is very frustrating. Any advice for me or for my daughter? Thanks

    • paradigmsearch profile image

      Person of Interest 

      7 years ago from SoCal, USA

      Truly excellent. This hub will help people.

    • profile image

      serehfa 

      7 years ago

      I hear you :)

    • raymondphilippe profile image

      Raymond Philippe 

      8 years ago from The Netherlands

      Thanks for sharing your thoughts and experiences

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