Diagnosed - Undiagnosed?

Post Reply New Topic

Is it generally accepted that if someone says they have AS or any other issue on this forum, regardless of whether it's diagnosed or not, have the disease? I am curious what is accepted in this forum community, versus what is accepted in the general public. I am sure some have "illusions or fantasies" about having a particular ailment. Some people just want to identify with something or have an explanation for their problems. And I believe regardless of cause, the feelings and emotions are not any less valid.

Please note I am not challenging anybody's validity here. I think that people need a place to go and identify with, regardless of a professional diagnosis. And quite honestly it's none of my business and I really don't care.

Just understanding how things works around here.

I don't except every self-diagnosis or even every professional diagnosis. The professional ones that I do not except are ONLY those who were diagnosed at age 1 (before even able to hit language milestones), and do not even come close to fitting a diagnosis when they are older. I think those people were misdiagnosed. Other than that, I generally accept professional diagnoses. I don't always accept self-diagnoses. A lot of people here who are self-diagnosed do have very aspie/autie-like qualities and are likely on the spectrum. Some do not sound at all as though they are on the spectrum from the symptoms they supply. Those people, I do not readily accept (I mean, I welcome them here, I just don't think they are necessarily correct). For those who seem likely autistic but do not have a diagnosis, I cannot accept that thye are 100% autistic--how could I accept someone else as that when I did not even do so for myself when I was self-diagnosed?

IMO if you actually have AS, you'll know when you read the DSM description, because every word of it will sound like it was intended to be a personal description of you.

'Some of those' qualities would only be PDD-NOS. I think professional assessment is important, because autism is a serious handicap and it doesn't help us as a community for anyone to go around claiming to have Asperger Syndrome when they don't, just to account for a mild case of social anxiety or feelings of alienation. Shyness and trouble getting a date is not enough, its much deeper and more pervasive than that. Its also not something you outgrow - anytime I see someone saying they had AS, but they got over it, I know they either never had it, or they're fooling themselves about their own coping mechanisms.

That said, obtaining an official DX can be very difficult, especially if you're already an adult. There aren't a lot of mental health professionals out there who have experience diagnosing autistic adults, and its a lot different than with kids, because adults have had years to learn to hide their difficulties.

Also, there are people who have difficulties obtaining official diagnosis. Where I live, the only people who are likely to get diagnosed with ASD in this moment are children below 10 years of age. High-functioning adults are simply considered weird or difficult, low-functioning ones are labeled mentally ret*d.
Question is, what happens when a medico qualified enough to diagnose themselves says they have ASD? Do they actually need a second opinion?

This wasn't true for me - the descriptions were, honestly, too abstract for me to actually get what they were intended to mean. I had to find more concrete explanations by people who were autistic themselves and that was when I actually understood that I was on the spectrum.

I do admit that I have known for years that I fit the criteria for intense, focused interests, but I didn't think that meant I was autistic.



This is why I don't think it's necessary to insist that anyone who finds the criteria fits them should need an official dx before they say they have it. I do think they should be clear it's a self-diagnosis, but I don't think that should keep them entirely silent on the matter.

What I thought was broader autism phenotypes, fit myself. But there isn't such a thing-- the category might exist with light ToM impairments . Other than that there is overlap with ADHD, etc.

I'm clearly not in this.

I'm curious, is there something that is a dead giveaway that puts one outside this "box," littlelily?

I assume everyone who says they have AS whether self or professionally diagnosed has AS until their posts imply otherwise. As for me, I very strongly believe I am an Aspie for 2 reasons: First I scored several standard deviations above normal on two self administered tests(see sig) and far more importantly, while I was taking them, I kept remembering specific instances when I was a child that matched exactly the trait or behavior the question was referencing. One day I hope to be professionally diagnosed, but for the moment I can't afford it. Psychologist visits tend to be quite expensive when you don't have insurance. Someday, but not anytime soon.

I'm going to a Neurologist appt on thursday hoping for a diagnosis. I'm even bringing pictures of myself as a kid, and it's obvious when you see my lack of expression or forced expression that is way too overdone. But I believe some people aren't when I see their threads explaining their symptoms and it seems to me it's just anxiety. When you're someone like me who has no friends, extreme ToM problems, and meltdowns there's a difference. I do not want to judge them though but I even see people on yahoo answers sometimes claiming they have it just by their lack of social skills and it's obvious it's probably just social anxiety. Like the poster above, when it is as if you fit the DSM completely or when you feel something is off and the world crashes down around you you might have it. When I looked at the symptoms and took the tests and it all made sense I literally walked into my ex-girlfriends house and said."Why didn't they ever think to test me!?"

I am not sure I understand the question?

You mean, something that makes the person not-autistic? There is not one thing. It is a combination of things. All autistic people are different, so not all will look and act the same way. I just think the box is the diagnostic criteria, and if they do not fit in that box, then they are not aspie/autistic.

That being said, the reason I believe a professional diagnosis is important is because there are people who think they fit in that box, but they really don't. Many of those people did not have the symptoms from birth, but manifested them as they got older. This is often because they have another condition that has manifested autistic-like symptoms that superficially seem like they fit into autism or aspergers when they are really rooted into something else. I think a professional is more eligible to identify this because, unlike people who study one disorder and give themselves the label (or those who study the basics of a few disorders and base their self-diagnoses on that basic information they have), psychs have in depth information on a wide variety of disorders. They are more able to see where a person's symptoms are rooted because they know about disorders the patient may not, and they likely know far more information about each of those disorders. This is why I cannot see self-diagnoses as completely accurate, even if many self-diagnosed people turn out to be correct. I also know self-diagnosed people who thought they fit the diagnostic criteria perfectly, and it turned out they were not on the spectrum.

I don't check and see if someone has it or not. I tend to just look at what people are saying in their posts and try and help and get something from it.

One thing I will not do is help anybody self-diagnose. I find it quite odd how many people will come online and say, Do I Have This? Does it sound like this to you? After they've been blown off by professionals, they want to hear an answer for something. How would I know? Sure your symptom COULD be this or that. But, it could also be quite a few other things. And there are so many other things to consider. I dont know how the internet, even the online tests, can give an accurate diagnosis. I am a professional and even I wont make a reckless statement. *shrugs*

However, as I said, regardless of diagnosis or lack thereof, they still have issues that they are needing help with. Period.

I think self-diagnosis can make you have more problems than you really have if you are trying to fit in a box. A doctor would help sort things out and help you fix the areas that need working on leave the ones that don't.

As for the board, I've seen people that don't have AS as I know it, but I don't know everything.

Ahh, I think I have the metric of whether one has it: "significant impairment": Are you on the edge of existence? Is there a compensation that you are aware of, that puts you on "this verge?"

It's at least a start and I've been" here," but my issues are "EF" from ADHD. Once I read this information on ADHD PI, I knew it.
The Doc confirmed this.

With Asperger's I vacillated on it; deep down I had doubts. Not with the above.^

These two conditions can make this difficult to know the difference. In fact I noticed a lot of web info. on adolescents falling into the cracks; 'in either way.'
Other than being BAP, ADHD or having "damage" to a hemisphere, what 'other' is possible; I wonder?

I can't remember much about this so I AM ABOUT TO BE VERY VAGUE, but there's this thing where you read the list of symptoms for whatever disease/syndrome and you feel like they apply to you, whether they do or not. That's (partly) why you can't diagnose yourself. With anything.

Being a hypochondriac.

I generally assume that anyone's diagnosis, self or professional, is accurate if they themselves are sure about it. There are various reasons that an adult may not have or be able to get a professional diagnosis, but self-diagnosis can still be extremely helpful for understanding themselves. The only times, very few, when I wonder about anyone's self-diagnosis is when it becomes apparent that their personal understanding of autism has little or nothing to do with autism, even after taking into account the full diversity of the spectrum, in which case they may have misdiagnosed themselves with autism based on a misunderstanding of autism.

On this forum I generally try to accept that people who say they have AS do. I don't think there's any point challenging them or making them feel as if they don't belong or are faking it just because they can't get a professional diagnosis. I think that anybody who feels that this forum is helpful to them should be accepted

I was professionally diagnosed before I even really knew what Asperger's Syndrome was, so I guess I don't know exactly what it's like to be undiagnosed.

For instance, my mum has a lot of the traits, but can't really go for an assesment because there are very few places which will diagnose adults.

Liane Holliday Willey, who wrote a book on AS, self-diagnosed before being diagnosed by Tony Attwood.

There will be some people who misuse the term AS, of course. There are always the people who will do something and then say, "It's not my fault, I have AS" And those are the ones I don't believe.

Someone who says they have AS on this forum and then writes about their difficulties, may not be diagnosed with AS, but the difficulties are still there regardless of whether they're diagnosed or not.

But I guess there are probably quite a few people who self-diagnose incorrectly, so if you want to have a diagnosis you should try and seek a professional one out if it's at all possible.