Lived Self-Diagnosed, then Confirmed not to have AS

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Hi,
I just joined yesterday, so many of you may not be familiar with me.

I'm an 18-yr-old pre-med college student and plan on being a neurologist or neuropsychiatrist as a career and I want to specialize in autism as well as seizure disorders.

Anyway, I had always felt a bit different my entire life, like I didn't belong. I was always described as quiet and shy, never had many friends growing up, felt anxious a lot, was very strict and routine about everything, slightly self-injurious, and was "particular" about everything.

Well, when I was 14, I came across Asperger's on the internet and was like "Wow! This really sounds like me!" I began reading about it, buying books, watching documentaries, videos, researching it, etc and I was convinced that I had it. It sounded a lot like me in many ways. I became convinced that I had AS, especially since I read some autobiographies and could relate to the people with it in many ways. I was so sure I had it that I even began declaring that I had AS to teachers, friends, and family members. I even joined many myspace groups for Aspies and such. I even joined the "anti-cure movement" so to speak. Finally, after constantly being told by parents of ASD kids and Aspies themselves that I should have an official diagnosis, I went for one to a psychologist who worked with "kids" with AS. She said "kids", so I don't know if she meant children, adolescents, or adults, or what. But anyway, she completely ruled out AS and said I most certainly did not have it. She said I read body language, made eye contact too well, and communicated what I was feeling too well to even be on the high end of the autism spectrum. Instead of AS, I was just diagnosed with Generalized Anxiety Disorder and put on Lexapro, and the medicine REALLY did help me function better.

I have to admit, I was literally crushed that she told me I did NOT have Asperger's. Because I was so certain I had it that I had told others and become active in and accepted by the AS community quite well. It was so embarrassing to have to go back to my Aspie myspace groups, admit that it turns out I did not have the disorder. And they weren't supportive of that. Some of those groups have several hundred or even a few thousand members, and I was getting criticised so badly that I had to delete my myspace account and start a new one. Aspies were calling me "fake" and parents of ASD kids were saying that I needed to take back all of my "anti-The Cure" mess since I was not autistic.

I was not satisfied with my psychologists' opinion, however, and went to another. It was a male this time. He also evaluated me and said he did not think I had AS, and that if I did have it, it was too mild and high functioning to be considered on the spectrum. I argued that I met more than enough diagnostic criteria for it, but he refuted that if you bring out the DSM and just go through it, you will find you fit the diagnostic "criteria" for MANY disorders, but it doesn't necessarily mean that you have them and that if all one had to do to "have a disorder" was "meet criteria" every single person in the world would have multiple mental disorders.

So my story got me to thinking, is self-diagnosis really that accurate?

From what I have researched, lots of Aspies say you know yourself best, so only you can know if you have AS/autism, but at the same time, what if you feel with every drop of your being that you have it, but get evaluated by professionals, who both say there's no way you have it?

Anyway, the reason I am here is not necessarily because I am an Aspie/Aspergerian (not sure of the preferred term) but because I do have *some" AS characteristics, (but apparently not enough for a DX) and I am an autism researcher/ student looking to interact with people from the spectrum and see how HFA and AS have affected your life.

Have you taken this? www.rdos.net/eng This might give you more insight on whether you have AS or not. But I'm sure WP won't mind if you are NT

BTW which Myspace groups were you a member of? I created and joined a few Aspie groups on MS.

I believe the autism "community" is non-exclusive. It is for everyone - self diagnosed, neurotypical, diagnosed - that is looking for the betterment of people living with autism, autism awareness and advocacy. No one "owns" who is a member or not and you don't get a special card to get it. In reality, many institutions will not give you any services or accomodations if you are not diagnosed by a certified professional. I believe many people who are self-diagnosed are in it for the self-awareness - there life is already to complicated to get a label, they are too functional to have the label, and they don't need no accomodations.

You can always go look at different psychologists. This is sometimes derisively described as "label shopping", but if you are still unsure, then you may as well go.

I don't know how many NT's would do this. Almost every Aspie went through this. Don't be discouraged. You could have AS but just be too mild to be diagnosed, which is surprising because a lot of mild people get diagnosed.
It's horrible that people were calling you a fake aspie. These people sound like a bunch of elitist 'Aspergians' that think they are the next evolutionary step in the human race. Honestly, forget about them. You are welcome here, diagnosed or not.

I think it depends on, accurate for what.

Accurate for letting you know if fit the official conception of something as defined by the APA? I'd say no on that.

Accurate for letting knowing if you have enough traits of a disorder/syndrome that the label can help you learn about yourself and find tools that can help you to develop as a person? Yes, I would say.

I think it's very strange that he'd say you meet the diagnostic criteria but don't have it. What's the point of diagnostic criteria then? I think some people may partly meet diagnostic criteria but not fully. But, seems to me if someone can meet the diagnostic criteria and not have something (other than cases of, if meets the criteria X, don't diagnose Y), then the criteria should be revised. Maybe with occasional excepts, but that doesn't seem like what he was saying.

Both with a self-diagnosis and an official one, I do think it's important not to box oneself in. Not limit oneself based on what someone with the diagnosis supposedly is like. Be oneself, whatever that is.

Thanks for that link. I looked at it, and see, when I read that kind of stuff, it is basically screaming my personality and life story, but according to professionals I don't have it. I keep getting the whole "Everyone has some autistic traits" thing. I also score a 168 on the Aspie quiz. It's so weird that I score high on an Aspie Quiz, I have those quirky things that so many pepole with AS do, but professionals just see an anxious young adult with a high IQ.

Also... I had a special ed teacher (who deals with both AS and Classic Autism) say that I would be one of the last people she would think would have AS.



Oh Gosh... it's been a good 2 years AT LEAST since I have even been slightly active in those groups, but I was in "United Aspies", "Autistic Pride", "High Functioning Autistic People", "Asperger's Meeting Place", "I Love Someone With Autism" (didn't really like that one), and one called "Spectrum".

I had the opposite issue. I had professionals say it, and I denied it. I had only understood severe autism (cousins). The school told my father to have me evaluated, and he told them that Aspergers doesn't exist. He was later told by professionals that he had severe Aspergers. He denied it... he barely functions anymore.

I eventually had the full evaluation, and only accepted my diagnosis after I saw proof.

Thanks for the welcome. Glad WP is pretty accepting.

I was told by one of the angry parents from my former myspace groups that anyone in the world could get a label of PDD-NOS or AS after they went to enough doctors.... I don't fully agree, but then again, there doctors who throw out diagnoses left and right.

I do believe that doctors make mistakes. That is why I wanted logical proof of my diagnosis. I do not want to be incorrectly labeled. I went through the same with my son. He was evaluated by a neurologist and developmental pediatrician.

My daughter's disorder was accurately diagnosed as well. I specifically asked for the MeCP2 (genetic test) for Rett Syndrome. It was positive.

I thought it was odd, too. But since I have studied several university credit hours in psychology and looked at the DSM in depth, some criteria is structured in such a way that anyone could "mildly" have the disorder being described, so to speak. Make sense? But still... I meet more than enough of the AS diagnostic criteria, yet professionals don't see it. But come to think of it, they do say females are better at "blending in" and "hiding" symptoms....

My neuro told me that he only gives the diagnosis if there is moderate to significant impairment caused by the symptoms. That made sense to me.

My son's doctor who diagnosed his AS said that she doesn't think I have it.

I disagree.

You "sound" like someone on the spectrum. Can't say any further than that about you from here.

See I think some people see such severe cases of AS that they see someone that doesn't have it as bad and so think that they don't have it.
My friend worked with AS children and said that some could not write.

Also, doctors will not diagnose AS if they the diagnoses won't help you much. My psychiatrist was reluctant to diagnose me because he couldn't give me meds to help me, and even though I'm moderate AS he said that I should just avoid those things that I have problems with. Eventually he did diagnose me and recommend I go on disability.
I'm guessing that is why you got the General Anxiety Disorder diagnoses, because they could give you meds.

That makes sense, but it's also one of the diagnostic criteria that there has to be "clinically significant impairment", so, as I understand it, if there's not enough impairment, you don't meet the diagnostic criteria.

Perhaps that is what the psychologists who have seen me think then? That's probably what is going on.

I do have slight social impairment, but it's not nearly as bad as it was when I was a kid. Now, I can make small talk, I'm quite sarcastic, and I don't get any social anxiety. I'm usually liked by most and don't appear socially awkward on a daily basis.

However, intimate relationships are a different story for me. I will soon be 19 and have never kissed a boy or been in a relationship for that matter. I have a very strong sensitivity to peoples' smells and being touched, so I think intimate relationships will be difficult for me, although I do certainly want to get married and have children some day.