For those with undiagnosed Aspergers...

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If I drove all the way over to Portland to get a diagnosis, I would most likely show up on their doorstep IN a meldown! I live in a very rural place, and an expert diagnosis would be like going on a quest to a place far far away....to a place with insane traffic.... besides.... I HAVE a diagnosis. I diagnosed myself, and after all the studying I've done on the subject, I may be one of the few people in a hundred miles who's somewhat of an expert on the subject! Having spent 40+ years trying to figure out why I am diferent, I am now an expert on *ME*. My diagnosis is just as valid as anyone else's and a whole lot cheaper too.

oh... a better answer just occurred to me.... if I self-diagnosed myself with the flu, would anyone question my assessment? If I self-diagnosed with social phobia, would you question that? The only reason I see to pay lotsa money to get a professional's diagnosis is to obtain medicine. But in the case of Aspergers, there is no cure and there is no medicine so what is the point of paying a professional to agree with my own (free and sincere) assessment?

I meet the criteria. In fact, I've met the criteria ever since I was a child.

I don't seek an official diagnosis because I don't want people thinking I'm crazy/ret*d. My mother, in particular, would probably think I'm incapable of taking care of myself if she knew about my suspicions. Since she thinks I'm gifted, she would not think I'm ret*d. But she would probably worry that I would need help to perform everyday tasks. For obvious reasons, I don't want such complications.

Besides, I'm always doing research on the subject. My unofficial diagnosis stands still.

Yay, why all this fuss only with Asperger's?

I think I am going to laugh every time someone uses the flu as an example. I diagnosed myself with the flu two months ago, but the aches and headache that I thought were prelude to fever and illness turned out to be chronic and not viral at all. I had a very similar problem last November, when I felt sick with flu-like symptoms and no flu. I think back to the number of times this headache/migraine + aches combination has flared up over the past several years, and a different pattern emerges.

But I think most flu self-diagnoses are accurate, and I don't mean to criticize your example. This was just on my mind.

So like me!
- But i got a dx to confirm. - Why? Only, and only, because i'we got a child who need help, at school. And we could'nt convince the system without.
Our daughter is so charming and manipulating, that she, despite obvious traits, slipt trugh the system. It first became obvious that we (her mom and me) were right, in the middle of first grade.
When the teachers couldn't keep her focussed during lessions. - She'd continue to withdraw to her own fantasies... What am i doing? You all know what i'm talking about...

I suppose you don't know for sure if you don't have a proper diagnosis, but some people may just feel that they fit well with it and come on sites like this for support- and I don't see anything wrong with that as long as they're not claiming to have a diagnosis when they don't.

Personally I was diagnosed at eleven, with "Autistic Spectrum Disorder" by CAMHS, but they told me and my parents that it was Asperger's, as that's what the assesment was for. They said that the reason they officially put down that instead of specifically Asperger's was because of my bilingual background- it was a bit confusing really, but I have been proffesionally diagnosed.

It's true that some people who have it haven't been diagnosed but also that some people might be misdiagnosed, in the end I suppose it isn't really the label that matters, although it can help in some ways having the "right label".

If anybody feels like they are having a lot of trouble and would benefit from help of more understanding of themselves they should definitely go to get a proper assesment though.

Every online test I have taken leans toward placing me on the spectrum (I scored 42 on the AQ Test). This would suggest that I am on the Autistsm Spectrum. I fit most of th criteria for Asperger's (high IQ, "special interests", social awkwardness, poor motor skills etc.). My GP has other adult patients diagnosed with Asperger's and believes that I could well have too (rather than just telling me to stop wasting his time, which I expected him to say). The only reasons that I don't have a diagnosis are:
A - the condition was barely known when I was a child so I was just brushed over as "shy".
B - lack of facility in my county. The nearest clinic that can see me on the NHS is over an hour away and it still needs funding to be secured first. I can't afford a private diagnosis (approx £400). Therefore I have to wait and hope that my GP can secure the funding.

I need this diagnosis, for support, understanding, financial benefits, and work issues.

You don't officially have a form of autism until you're diagnosed. Unofficially, one could self-diagnose, and anybody who feels so strongly about having an ASD should try to seek an official diagnosis. However, if obstacles (such as money) prevent someone from getting tested, then a self-diagnosis will suffice.

To me, a diagnosis is only relevant as far as treatment options are concerned. If you know you have an ASD (diagnosed or not), you find out how to make the negatives more positive, and the positives bring out your untapped potential.

I was diagnosed with HFA/AS when I was nine. Problem is, they stopped there. After the diagnosis... money was an issue for my parents. It always has been. Of course, my dad does have a high budget, me and him both get SSI and he gets disability checks from the Veteran's Hospital. With all the bills, its hard to get any treatment for me. I have a psychiatrist and other than that I qualify for counseling but I can't sit there talking to someone, I have an issue with not only social interaction but also communicating verbally and expressing myself. I have problems expressing myself verbally and emotionally. I have to write things down but doing that, ends up being more than a page.

My parents have tried to get me someone who can do things with me, like a big sister, called respite care but they haven't heard anything. They think that if they could, it would help me with social interaction and also getting out of the house to explore my surroundings but they've turned me down because I don't qualify.

It sucks because I do have several developmental delays but they only see them mild autism or the HFA/AS. They don't see it in my parent's eyes and what my parents have to go through. I understand what you guys go through, since even if you do get diagnosed, you will get nothing out of it and I understand that. I've been diagnosed with HFA/AS for about fourteen years and I have only received speech therapy and psychiatric help.

People don't get the idea of a disability. Most NTs consider a disability as something physical, that you can see or clearly causes significant mental and developmental impairment. But for some like me, I am the odd on out because I only fit on the borderline for developmentally-impaired.

As far as I'm concerned it doesn't really matter. The DSM is just a few lines of text. It's not reproducible math. It's not a brain scan. It's not a chemical test. There may even be false positives depending on what you tell a therapist and what they feel like telling you. Misdiagnosis is common enough. So even with the official dx, you don't really have absolute certainty.

It's likely I have it based on my reading and my history. One side of my family has many of the markers as well. I recently found out that a cousin that I don't know well is diagnosed with AS. Which is not a surprise. It's the side of the family that I believe carries it.

Very true.

I don't know what is REALLY wrong with me, but I've had sufficiently many people ask or suggest that I am autistic. One particular source is a close friend who has half his family working in Psychology (himself included). Usually people are discreet about telling me what I'm doing wrong, but 2 weeks ago I was hanging out with a new friend with others who know me very well and this guy kept asking me literally "Dude, what kind of autism do you have?" Without any previous input from me about said condition.


As to having it confirmed by a shrink, I think it's useless. For one, when most people hear they've something wrong with them mentally, the next question is "how else am I f****d up?" I think worrying is pointless, so this is one of those cases where I'd rather be ignorant. Plus, I've a SLEW of other physical stuff that's wrong with me.

Another factor is that I feel that I am sufficiently high-functioning not to deserve public aid. Should my parents kick me out and should I become unable to support myself, I'd rather die (trust me, I'm sufficiently acquainted with pain to imagine dying of starvation) than accept strangers' aid.

A third reason, is that while I am readily willing to use all manners of drugs (though I prefer hallucinogens) recreationally, I am DEATHLY AFRAID of being put on any medication in a permanent fashion. I very much love the imperfect person that I am and feel that to forcibly suppress some aspect(s) of it with drugs is, at best, the equivalent of imprisoning the person that resides in this body and denying access to it. At worst, it is synonymous to the death of a mind, much like the idea of mind-wipes in Ursula K. LeGuin's City of Illusions. The mind that resides in this body would not appreciate another living in its' place in anything more than a fleeting temporary fashion.


Finally, returning to reason two, my life is pretty challenging...and I love challenges. A simple life would be boring and not worth living. Literally.

I can understand where you are coming from but one thing I notice is that you are putting "professional" diagnosis up on a pedestal. I mean you seem to take it that what the doctors say is law. So just imagine if the "professional" had decided that you had ADHD instead? Then maybe in your 20s, well after school you read about Asperger's or HFA. As you read this suddenly things seem to "click" into place, things you had trouble with that were explained away as child things, ADHD troubles or just ignored fit completely in HFA. Not denying your diagnosis, I don't doubt you, but some people do get bad diagnosis' from doctors sometimes, including many others here.

Be careful, the diagnosis is the *opinion* of a professional, and like all people they can make mistakes. This is why you hear about some people that visit multiple doctors, because they may disagree with their opinion. Just something to think about anyway.

As for self diagnosis- There are those that will abuse any disability, for their own ends. Some people will go to amazing lengths to get something for "free" (at the cost of dignity, nothing is free).

Then there are those that know that they are different somehow. They may manage in life and so they don't feel a need to find out what this difference is. However upon reading about Asperger's they may see how that "fits" them. So they seek out a community (like these forums) so they can talk honestly, or talk about the things they like without being labelled "weird" or get excluded or ridiculed for it.

Others may have just never had the opportunity or life situation when younger to ever get a diagnosis like you. This would be me. I never even knew of something called Aspeger's Syndrome until a few years ago, neither did my mum. My mum has said to me she thought there was an issue with me when I was younger but hey, I guess the school counsellors never heard of Asperger's either. So when your in the poorer classes, looking into expensive doctors isn't exactly an option either. Maybe I don't have an ASD but I am definitely "different" to other people.

Aerith, there is no medication for autism. Autism is the result of a neurological difference from the norm, not a neurochemical imbalance, and no drug is going to rewire your glial cells that dramatically.

OTOH, if you have a medical condition that is treatable through medication, you'd be foolish not to take advantage...

OP, in my case it took time to save the money for an official diagnosis. it cost me about $1000.

i had an informal diagnosis, essentially where the shrinks agreed with my self-diagnosis (well, they were split 50/50). so i did feel a little wobbly about whether it was true or not. i was extremely worried abou the testing because i thought that it could negate something i "know" about myself.

but my aspie friend summarized her feelings since i got the testing done: "yeah i wasn't as worried as you were that you didnt have it. Like i said, be more worried of the degree".