Pre Diagnosis

[Ruire]

Before you were diagnosed, what did you blame your aspergers sypmtoms on?


These are mine:
~Sensory Problems
I used to think i had a phobia of touch. I called myself "untouch friendly"
~Social Awkwardness
I used to be very very quiet, but after being heavily bullied 8th grade found a desperate need for friends and did a one eighty, no matter how awkward I felt at first! I used my lack of involving myself socially as not developing a filter for myself, which is why i was so awkward.

 

[Ereth]

I can't say I "blamed" anything---I just thought I was really socially awkward and didn't fit in with the rhythms of typical social cliques. I still don't, but at least now I know it's not just because I'm an oddball.

 

[MoCoffee]

I wasn't diagnosed with anything as a child. I was just considered weird, shy and over emotional. The first diagnosis of any kind were as an adult for extreme Social Anxiety Disorder, Anorexia Nervosa, and a sleep disorder. I was born in 1957 before Autism was well understood and I didn't have a diagnosis until a few months ago. I am so thankful that people on the spectrum are being diagnosed much earlier. After all, we can't get help if we don't know what the we need the help for.

 

[Judge]

What haunts me the most about such questions is knowing my parents knew there was something socially "different" about me and that they pursued the matter with medical professionals to no avail. My case just came along before the medical community seriously accepted Dr. Asperger's research and findings.

I ended up going through more than half a century thinking I was just a one-of-a-kind, with absolutely no one to honestly relate to. A social failure.

 

[Aspieistj]

I was in constant pain before I realized I was an Aspie and now I am terribly angry and resentful. I am almost 70 and didn't learn I was an Aspie until I was in my 60s. All I knew before that almost no one liked me, I didn't have a clue why I was so different, I sometimes tried to pretend to be normal, and at other times I was just angry at the world. I was helpless to MAKE the world accept me and I could fake it only for short periods. My parents constantly criticized me for "having to always be different." I frequently forgot to be phony and simply reacted and then realized I had again showed my true colors. I never seemed to care about the things my peers did and I often felt they were just plain stupid to follow the crowd and all act alike. I was an excellent student and very intellectually competitive so I felt good about myself for being a really good student. I was good in music and loved singing and playing in bands and orchestras. I was a voracious reader. I just kept trying to keep a low profile and "fit in" enough to get and hold a decent job. I was first a Music Ed teacher and then a Registered Nurse. However, I was always on the outside looking in. I was, and still am, an alien in a hostile environment. I was afraid for my job most of the time and frequently was criticized foe not being "normal."

When I finally realized I had AS I tried very hard to remember to react as others did, but I frequently reacted first and then remembered I should have tried to be more normal. There is still no way I can stop myself all the time from showing my Aspieness. I was depressed, angry, alienated, afraid and totally miserable and hated the fact that I had been born so different and that no one seemed to care that I couldn't help myself. Learning I had AS was a gut wrenching process. I am very defensive because I am handicapped in this world and no one gives a damn. They just lecture me to act "NORMAL!!!" It is exhausting to constantly try to stay on the right side of NTs and because I was able to retire at 62 I simply became a hermit. I can do OK going out in the world to shop or interact superficially with people for brief periods so I can shop and take care of myself. My kids, one in CA whom I seldom see, and the other, married and 30 minutes away and also a hermit because all he wants to do is drink as soon as he gets home from work, have been told but I don't think even they understand how much I wish I had never been born. I know many Aspies refuse to feel they are handicapped, but I definitely believe I am as handicapped as the people whose deformities or challenges are plainly visible. I wish NTs were fully aware of what it means to be on the Autism spectrum, that we can't magically morph into NTs, and we aren't bad people for acting differently from those blessed to be normal. I wish AS and Autism were as well understood and accepted and Down Syndrome and that the public understands we aren't deliberately refusing to act like NTs.

 

[Ruire]

I was in constant pain before I realized I was an Aspie and now I am terribly angry and resentful. I am almost 70 and didn't learn I was an Aspie until I was in my 60s. All I knew before that almost no one liked me, I didn't have a clue why I was so different, I sometimes tried to pretend to be normal, and at other times I was just angry at the world. I was helpless to MAKE the world accept me and I could fake it only for short periods. My parents constantly criticized me for "having to always be different." I frequently forgot to be phony and simply reacted and then realized I had again showed my true colors. I never seemed to care about the things my peers did and I often felt they were just plain stupid to follow the crowd and all act alike. I was an excellent student and very intellectually competitive so I felt good about myself for being a really good student. I was good in music and loved singing and playing in bands and orchestras. I was a voracious reader. I just kept trying to keep a low profile and "fit in" enough to get and hold a decent job. I was first a Music Ed teacher and then a Registered Nurse. However, I was always on the outside looking in. I was, and still am, an alien in a hostile environment. I was afraid for my job most of the time and frequently was criticized foe not being "normal."

When I finally realized I had AS I tried very hard to remember to react as others did, but I frequently reacted first and then remembered I should have tried to be more normal. There is still no way I can stop myself all the time from showing my Aspieness. I was depressed, angry, alienated, afraid and totally miserable and hated the fact that I had been born so different and that no one seemed to care that I couldn't help myself. Learning I had AS was a gut wrenching process. I am very defensive because I am handicapped in this world and no one gives a damn. They just lecture me to act "NORMAL!!!" It is exhausting to constantly try to stay on the right side of NTs and because I was able to retire at 62 I simply became a hermit. I can do OK going out in the world to shop or interact superficially with people for brief periods so I can shop and take care of myself. My kids, one in CA whom I seldom see, and the other, married and 30 minutes away and also a hermit because all he wants to do is drink as soon as he gets home from work, have been told but I don't think even they understand how much I wish I had never been born. I know many Aspies refuse to feel they are handicapped, but I definitely believe I am as handicapped as the people whose deformities or challenges are plainly visible. I wish NTs were fully aware of what it means to be on the Autism spectrum, that we can't magically morph into NTs, and we aren't bad people for acting differently from those blessed to be normal. I wish AS and Autism were as well understood and accepted and Down Syndrome and that the public understands we aren't deliberately refusing to act like NTs.

I agree it is a handicap... and people don't seem to get how hard it is, and that is almost as frustrating as the problems themselves.

 

[Ereth]

I wish AS and Autism were as well understood and accepted as Down Syndrome

Except . . . it's not like that. I've had several friends with Down Syndrome over the years and they go through so much ****. I don't think it's fair to anybody to say, "Well, So-and-So with X obviously has it better than we do." While doctors may understand what causes Down's Syndrome and can identify it in a prenatal screening, it doesn't mean people who have it are any more accepted than people with autism. Many pregnancies are terminated are the result of a Down's Syndrome diagnosis (and no matter what your views are on abortion in general, I hope it bothers you---it smacks of eugenics to me).

And I've heard enough jokes at the expense of people with Down's Syndrome to know that they are definitely still fighting for acceptance from the general public, just as we are.

 

[Ereth]

Crap, I meant to write "as the result of." But I can't edit my post now since it's been too long. (Forgive me for being a language nerd. Can't turn it off.)

 

[Warwick C]

I know what its like Ereth, when I look back on some of my posts and see spelling mistakes. I might not be very good with grammar, but I try to do my but with my spelling.

 

[Drake Marino]

Before my diagnosis, I didn't blame my Asperger's symptoms on anything. In fact, I don't think I really knew that I was different from everyone else until the first day of middle school, when I saw everyone else socializing and making new friends during recess while I sat alone at a bench. All I knew was that I was an outcast, and I had no idea why. Looking back, I think the most frustration I had as a little 6th grader was that I was completely clueless about what made me different and the rules of socializing; it felt as if I were in a foreign country when I was at school. Consequently, it resulted in me doing numerous things that damaged my reputation, caused me to get made fun of, and become even more of an outcast.

 

[Girl Anachronism]

I was misdiagnosed with a few different conditions so I never got the childhood intervention needed. Many doctors were just dismissive of my parents' concerns saying "She's just odd; she'll grow out of it". It was the 90s; not many people knew about Asperger's and most people who did know thought it only affected boys.
I got bullied quite a lot as a kid and unfortunately the school didn't so much as lift a finger to help. The biggest thing about potentially being a mum in the future that scares me is helping the kids get through the K-6 years of school. "Kids are cruel" definately applies in those situations.
My teens were a lot better as my high school had a lot of 'oddballs'
Only when I got the diagnosis at 19 did I know how to work with it.

 

[Aspieistj]

And I've heard enough jokes at the expense of people with Down's Syndrome to know that they are definitely still fighting for acceptance from the general public, just as we are.

I beg to differ. When I was a child Down Syndrome children were called "retards" and "morons." They were segregated in "special class" schools. When I began teaching in Stratford, CT in 1966 there were still old, nasty school buildings where "special class" students were taught. At that time, mainstreaming was a new concept. I taught vocal and instrumental music, K-6, and eventually requested to teach all 13 classes of elementary level special students. The toughest were the 3 or 4 classes of emotionally disturbed children. They sometimes became violent and those classes were very small. I feel that Asperger Syndrome is the new Down Syndrome. It is now a social nicety to be "tolerant" of people on the spectrum. I wish we were as far along the social acceptance movement as those with Down Syndrome.

 

[Arashi222]

No matter what label you put on it being different has its hardships. Girls on the spectrum have had a harder time being accepted than their male counterparts do to the lack of training in the differences there seems to be in the realm of Autism and females. Now for me pre-diagnosis. Well yes I was made fun of in elementary and high school for varying reasons including but not limited to my vision issues. I had no what you would call educational intervention but my mom made sure that I was in a private school instead of public as I seemed to do better in a smaller class setting though the private school was not equipped to handle disability accommodations. So I just suffered through until the last couple years of my high school and went to counseling to learn to make friends because I was depressed well it was the late 90's people didn't think girls could have AS. So I wasn't diagnosed until I got my Masters degree from my internship...yup it took my supervisor at my internship to tell me that he knew why I was different that it was ok.

 

[Ereth]

I beg to differ. When I was a child Down Syndrome children were called "retards" and "morons." They were segregated in "special class" schools. When I began teaching in Stratford, CT in 1966 there were still old, nasty school buildings where "special class" students were taught. At that time, mainstreaming was a new concept. I taught vocal and instrumental music, K-6, and eventually requested to teach all 13 classes of elementary level special students. The toughest were the 3 or 4 classes of emotionally disturbed children. They sometimes became violent and those classes were very small. I feel that Asperger Syndrome is the new Down Syndrome. It is now a social nicety to be "tolerant" of people on the spectrum. I wish we were as far along the social acceptance movement as those with Down Syndrome.

And you think it's much better for them now, socially, than it was back then? They're still called morons. They still have to deal with the same kind of intolerance that people with autism do.

In addition to my autism, I have cerebral palsy. Are you going to say that I've been more socially accepted than others because people empathize with and like Forrest Gump? I have waded through so much crap in my life because of my CP that if it were real, I'd need at least sixteen showers to clean up. And all this was for years before I knew about my autism. But there's no way I'm going to blame people with other problems for mine. That doesn't do anything productive.

I do not---and nor will I ever---believe that being divisive will solve anyone's problems. We're all on the same side, no matter what our different obstacles are.

 

[tridianprime]

I had theories. I did have very bad depression so i blamed everything on that. Due to the coping mechanism i built up, i also thought maybe SPD, BPD or ASPD.

 

[Warwick C]

Another thing I would like the professionals do is retain the seperation of Aspergers and Autism. That way each would get an equal level of research, rather than lumped together under one label.

 

[Judge]

Another thing I would like the professionals do is retain the seperation of Aspergers and Autism. That way each would get an equal level of research, rather than lumped together under one label.

It's administrative decisions like that which leave me somewhat suspicious at times that political and economic priorities may have overtaken scientific concerns.

 

[Warwick C]

I would have to agree with you on that Judge as with all the cost cutting going on at the expense of those that need help and understanding.

 

[Thesaurusrex]

No matter what label you put on it being different has its hardships. Girls on the spectrum have had a harder time being accepted than their male counterparts do to the lack of training in the differences there seems to be in the realm of Autism and females.

I think this can also be attributed to the fact that as girls/women/females we are expected to have a high social intelligence and be more adept in this area because of our gender.


Pre-diagnosis was a struggle for me - generally I, and others, blamed some form of anxiety for everything. Since my teen years, I was diagnosed with social phobia, social anxiety, general anxiety, OCD, depression, gender dysphoria, agoraphobia and generally considered a bit crazy.

 

[Aspieistj]

I fervently wish Autism and Asperger syndrome were still separate diagnoses. There is such a wide range of social functioning on the spectrum that both groups will suffer a disservice if there is no way to indicate very high functioning people. Not fair to expect a profoundly autistic person to be fully independent in society and equally unfair to deny a high function person an opportunity for a good job. I also hate the term "high functioning" because it is an insult to severe autistics. The spectrum covers so much difference in functioning both groups deserve a diagnosis that describes their capabilities. I have always been depressed and never tried to hurt or kill myself. I was a teacher and then an RN, and successful in both jobs. I chose to retire at 62 but could have continued to hold my position as a nursing supervisor for several more years. Please don't label me mentally ill.