Self-diagnosed Aspies

[hojita]

I guess I'm self-diagnosed? I knew as a child that something was "off" about me. My mom works with a lot of autistic children and I recognized myself in them a lot. I asked my mom if she thought I was in the spectrum when I was 10 or so.

It was actually my current therapist who suggested AS. Once she did and I looked into it, I knew. It explains everything. My mom is still hesitant to agree but she does agree. I was supposed to start the whole diagnosing process but insurance won't cover many hours of testing and I can't afford to pay out of pocket. My therapist said she's comfortable with not testing for a diagnosis but rather getting input on direction of treatment and maybe see what the other person thinks. But would that still be considered an official diagnosis? I don't know. I guess I don't really care either. All I know is I have had suggestions of bipolar and OCD and have been treated for both plus ADHD with nothing except a knowing that something was missing. AS covers everything. AS makes sense and for the first time in my entire life, I don't feel weird or broken, and officially diagnosed or not, I can't ask for anything more.

 

[HelloDizzy]

I was diagnosed with so many things over the years. A close friend of mine, who is in the Navy, who I may end up with, told me when I was 14 that he thought he had Aspergers. So I went into geek-out research mode and I learned all about it and it turns out he does indeed have it. But I never once thought any of those things applied to me. I had learned to function pretty well in the NT world since about age 12 until they put me on Klonopin.
So then a therapist asked me if Autism ran in the family. I said I don't know and she suggested I had Aspergers. I ignored that.

Then I stopped ignoring it the more I became aware of how "off" I always had been, how obsessive compulsive about things, blank emotions - finally at age 20, in NY, a neuropsychologist determined that I most certainly have Aspergers and on top of that, ADHD, dyscalculia, and hyperlexia. I'm relatively surprised that my parents overlooked so much as just "quirks."

 

[total-recoil]

I've seen lots of self-diagnosed folks on the forum. I'm just curious. When and how have you decided that you might have Aspergers? And have you thought about getting an official diagnosis? And if you've already tried to get a diagnosis how did it go? Does anyone what to share their experience?
I've been diagnosed last year after seeing dozens of neurologists, after all the scans and pills and jokes and misunderstanding I finally got it. When doctor went through all the traits during the assessment I was shocked to find out that I had most of them. In childhood I wouldn't even think that rocking and staring blankly in space was abnormal, I thought everybody did it... at home that's why I didn't see them doing it anyway... reading so many messages from people who weren't diagnosed but still referring to themselves as people on the spectrum. I'm wondering when and why have you decided that it is the case?

I'm so sure I have aspergers, I didn't bother with any official diagnosis. I don't see how it could help my situation, given the fact people who do suffer disabilities in this country aren't given much help anyway. I mean, so little is known about aspergers so you have to see a specialist in the field and then I ask myself what happens after that? I still have to pay the same bills and try and live my life, meet people and so on so, to my mind, nothing really changes.
Also, I think the symptoms are really straightforward. Alienation, sensitivity to sound and fabrics, meltdowns, difficulty reading social cues and norms, stims and also prospagnosia which I find tends to come and go. Also, at the end of the day, aspergers is merely a word to describe a range of symptoms and the word is sometimes applied too liberally or applied incorrectly or maybe even confused with HFA. So, really I prefer to concentrate on the specifics of the problem as I guess I learned the hard way I can only help myself through it.

 

[grisey89]

Hi there,

I self diagnosed myself with AS recently. My parents have always been aware of my inadequate social skills since I waa a child and they always gave me advice on how to improve my social skills. However, they never knew why I waa so inept to social cues. My mom did some research in my last year of undergrad to try to figure out why I am the way I am in social situations and found out about AS. I thought about it for a bit and then I stopped thinking about it until the beginning of September. I dis research and found that I have a lot of characteristics pertaining to AS. I always had social problems and problems with fitting in. I went to a counsellor for one appointment and he suggested that it would not be a good idea to get evaluations because he is afraid I would get maldiagnosed so I am self-diagnosed.

 

[kimical]

I am looking for a diagnosis. I've been diagnosed with OCD and ADHD-I so next Wednesday I will talk to my therapist about it. I'm not sure how to go about telling her. I'm afraid she will brush it off as OCD hypochondria but I'm not afraid of having it, I think of it as a positive thing. Aspies have the ability to hyperfocus on their interests and as I am an artist, this helps with developing my skills.

 

[redleave]

Hi. I'm self diagnosed with online tests but next week I'll go to a specialistic autistic centrum.

When I was 10 yo my mother took me to a psychologist and he thinked I can have autism. He wanted to talk with my father but he refused so all stopped for me.
As child I have only one friend. I was very odd and very introverted and I don't wan't to play with other child. I loved play with animal and I loved nature. I have interest in astronomy, photography nature and animals.

When I grow up I realized I have strange behaviour, I have obsessive compulsive disorder, panick attack and ansiety. Among the people I did not feel at ease and run away. I have sensitive hearing and loud music hurt my ears. I also have problem with eyes. I don't know of interact correctly with other people.
I had few boyfriends. I love routine and I'm interested now in natural medicine. I discovered to be allergic to lactose, I have Irritable bowel sindrome and I think of me as 'half male half female' as if my brain it's a male brain.

When I meet my actual boyfriend he was strange and I done research on internet about him and I read for first about asperger's.
We took online test's and it was positive for both of us about AS.

So here I am. Read about aspergers sindrome helped me to know I'm not only introverted and odd. I was constantly criticized because I could not do the things that others do and I tried to force me to do it but I had panic attacks and could not understand why. Now that I know I probably have AS, I do not want to force me to do things against my nature, like go to a dinner or a party.

 

[total-recoil]

"I believe most people who "self" diagnose actually have autistic traits. Many so called neurotypicals have autistic traits as well. The real question is where do we draw the line for these traits and a disorder? How many are required to be considered a diagnosis?"

Maybe which is why we should not get too bogged down by a word. Aspergers is perhaps a generalisation of a wide-ranging pattern of symptoms of behaviour, at different stages of intensity. My best friend had official diagnosis and, yes indeed, his aspergers was far more open and obvious than my own. For a start, he struggled more than I did to actually talk to people normally. He would stand awkwardly with his feet pointed outwards and very often just say something totally inappropriate to a given situation.
My aspergers is more subtle and I can mask it far more easily. In fact, my difficulties relating to people in general only become more severe as a relationship becomes deeper. Given it[s subtle and not so obvious at first glance doesn't mean it's not a severe obstacle to leading a normal life and sometimes my aspergers can escalate to full meltdowns. That is, seemingly milder symptoms can intensify a lot in my case.
Anyway, a basic guide to diagnosis I think is when the individual is experiencing severe problems of social interaction and has always had a sense of being different.
As for undiagnosed aspies the one who made the biggest impression on me was Hans Christian Anderson. This was because when I first read the story of the ugly duckling I just knew only an A.S. person could have wrtten such a story. It's remarkable that before aspergers ever became an official syndrome, Anderson knew within himself that he was different in the sense of a swan compared to a duck. I have the film of Hans Christian Anderson on DVD actually and I found aspergers was actually written into the script. At one point someone asks Hans " where he was brought up" as Hans had been blowing his nose in a theatre. Hans responds, " not too far from Copenhagan actually" (literal interpretation of intended irony" .
As for "autistic traits", Michael Jackson I think is borderline. Not sure if he had aspergers but most definitely he had deep issues and severe problems relating to the environment around him as a normal adult would. My guess is Jackson probably did have aspergers and a few psychologists also express this view.

When I first learned about Asperger's Syndrome I was reluctant to the idea that I may actually have it. However, eventually I started to research it, purchased a few books, and by the time I finished them I was more confident I at least have autistic traits if not a full blown spectrum disorder. I would love to be officially diagnosed, but as many of you probably know, it's not an easy thing to do in America (mostly because of the financial cost). Maybe my new university will be able to help with that though!

Just wanted to add one thing about being diagnosed. It's highly subjective and often biased depending on which professional is treating you. You can be diagnosed with AS by one, and an entirely different disorder by another. Professionals don't have a 100% accurate way to say you have asperger's syndrome. It's simply not possible at this time. The symptoms associated with spectrum disorders can be see in many other disorders, hence why professionals bounce back and forth between disorders before actually settling on a spectrum disorder. Sure the conglomerate of symptoms is what really seals the deal for a diagnoses, but even that can be explained away by having multiple disorders such as social phobia, ocd, personality disorders, which are not entirely uncommon for people to have.

I believe most people who "self" diagnose actually have autistic traits. Many so called neurotypicals have autistic traits as well. The real question is where do we draw the line for these traits and a disorder? How many are required to be considered a diagnosis? The criteria used in the DSM could just as easily be biased towards a professionals idea of what an autistic person should be (difficulty with people and such).

I think many people diagnosed with asperger's syndrome by a professional may not even have it, and many people who are undiagnosed may have it. It's just too subjective at this time. I don't believe that people should even worry about labels such as "aspie" or even be bothered that people use that label without a real diagnosis. Both may not have it, or both could have it, or one could have it, etc.

A professional diagnosis is not a golden seal of approval.

It seems many people often have to speak with multiple professionals about it before finding one who agrees that you have it. That in itself seems it's introducing bias. If you look long enough you are likely to find someone who will say yes. Given the subjective nature of diagnosing it, it doesn't guarantee you have it.

 

[latortilla]

I'm not pursuing a diagnosis because I'm too poor.
I think I have mild aspergers and i think i'm going to try to finish this later because i need to go to sleep.

 

[epath13]

"I believe most people who "self" diagnose actually have autistic traits. Many so called neurotypicals have autistic traits as well. The real question is where do we draw the line for these traits and a disorder? How many are required to be considered a diagnosis?"

Maybe which is why we should not get too bogged down by a word. Aspergers is perhaps a generalisation of a wide-ranging pattern of symptoms of behaviour, at different stages of intensity. My best friend had official diagnosis and, yes indeed, his aspergers was far more open and obvious than my own. For a start, he struggled more than I did to actually talk to people normally. He would stand awkwardly with his feet pointed outwards and very often just say something totally inappropriate to a given situation.
My aspergers is more subtle and I can mask it far more easily. In fact, my difficulties relating to people in general only become more severe as a relationship becomes deeper. Given it[s subtle and not so obvious at first glance doesn't mean it's not a severe obstacle to leading a normal life and sometimes my aspergers can escalate to full meltdowns. That is, seemingly milder symptoms can intensify a lot in my case.
Anyway, a basic guide to diagnosis I think is when the individual is experiencing severe problems of social interaction and has always had a sense of being different.
As for undiagnosed aspies the one who made the biggest impression on me was Hans Christian Anderson. This was because when I first read the story of the ugly duckling I just knew only an A.S. person could have wrtten such a story. It's remarkable that before aspergers ever became an official syndrome, Anderson knew within himself that he was different in the sense of a swan compared to a duck. I have the film of Hans Christian Anderson on DVD actually and I found aspergers was actually written into the script. At one point someone asks Hans " where he was brought up" as Hans had been blowing his nose in a theatre. Hans responds, " not too far from Copenhagan actually" (literal interpretation of intended irony" .
As for "autistic traits", Michael Jackson I think is borderline. Not sure if he had aspergers but most definitely he had deep issues and severe problems relating to the environment around him as a normal adult would. My guess is Jackson probably did have aspergers and a few psychologists also express this view.

I thought Anderson had schizophrenia, that would be more consistent with his apparent personality There's a video explaining difference between schizophrenia and aspergers/ autism, how they can manifest similarly but how different they actually are, despite of similarities. But I forgot the name of the video.... I should find it again...

Sometimes I wonder why for some people on the spectrum it's so hard to "fake" it, it I seem to come to one conclusion, with absence of deeper processing challenges and other medical conditions it is lack of interest in human behavior. What I mean by that is: in order to learn behavior you have to be motivated in paying attention what other people do and learn from it, whether through observation or instruction. I think the reason why I became so good at communicating with people is because I was fascinated by them since early age. But then again, maybe I'm wrong.... I learned about body language, motivation, psychological "games" they play, what to say and what to do in different situations. I'm not saying I'm a perfect student, sometimes I would get bored, and start wondering why I need all this for, but then quickly snap out of it. My kids seem to have similar interest, so, hopefully with some help they can be successful at socializing as well.....

OK, I'm not exactly sure why I've been writing all this
I'm also not sure what I've been writing on the subject before anyway...
I think there's very clear difference between people who have Autism and who don't, sometimes people can be misdiagnosed or undiagnosed because there's no medical test, and because people themselves have hard time explaining their symptoms clearly enough, that's why, to a specialist, their symptoms might appear like an indication of a different disorder or something like that.

I personally think Autism tests for higher functioning kids and adults should be modified, you have to pay attention to intelligence level and comparative (hope I can use this word here) executive functioning, comprehension, ability to generalize, sensory processing. As for socializing, tests might need to be directed towards pinpointing differences in perception of human body, body language and behavior in general by people on Autism spectrum.

There's very important difference in the way people with Autism perceive and process information they are receiving.

People can display similar behavior, but there're absolutely different reasons behind the behavior, one person might appear that he has Autism but after careful examination you might discover that the key differences are missing, therefore he can not be considered on the spectrum.

I does seem to me that most of the self-diagnosed folks here are probably on the spectrum...


I'm not going to read through what I've just written. I'm not sure what it is all about but I think I have a point somewhere.... my thoughts are a little scrambled today