My issue with "self diagnosis".

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Even ecstasy can "improve" social skills. That does not make it a cure or treatment. I briefly considered taking oxytocin to see the changes it would produce on my behavior, since lab tests and posts from people here on WP seem to indicate it really can improve on an individual's empathy. But I eventually gave up. If I am to improve my social skills, I would like to do it by myself. But oxytocin is not a drug: it is a natural mammalian hormone that affects our brains during hugs, breastfeeding and sex.

Anyway, I think everyone is free to do what they want. Want to use illegal drugs? Take some synthetic hormones (which will not actually harm you)? Go ahead. It will not affect my life in any way.

Enough Already!! ! I am self-diagnosed. This means that through my research, I have net the criteria for diagnosis in the most basic sense, according to the definition of diagnosis. NOT clinical diagnosis.
This need for clinical diagnosis by you "purists" Is ridiculous.

I am so sick and tired of this need to fit into the perfect guidelines proposed by academia.

An example:
I have lyme disease.
The CDC, however says I do not have lyme disease.
I have had almost every symptom of lyme disease. I described them to a doctor. They agreed that my statements fit with lyme disease.
The tests they did:
Blood test, positive for antibodies
UA, Positive for the DNA of Borrelia Burgdorferii (lyme disease)
Internal biopsy, done through endoscopic evaluation. Again positive for the DNA of Bb
The CDC discounts ALL OF THIS because I never saw "the bullseye rash"
So, all the evidence gathered doesn't count because of ONE missing element???

In case you are wondering. My search for answers, and subsequently, a diagnosis was begun AFTER one of the leading AS specialists in the US TOLD my husband I should be tested. My husband was looking for help dealing with what can now be labeled a meltdown. He called multiple Dr.s. He spoke to him. We contacted the research center at the university where the doctor is employed. We found out it cost $750.00 to start the testing. They did not say to not look into AS. I did research to see if all the experiences that I could not piece together in my life just may fit the proposed diagnosis. They did.

I may seek an "official" (clinical) diagnosis some day if I have a spare thousand dollars laying around.

As for the person saying self-diagnosis is like wondering if a headache is a headache or a brain tumor???

The Drs may not know either.

I was diagnosed by professionals as having MS.
I was immediately admitted to the hospital for treatment after they had an MRI with of my brain showing lesions.
While in the hospital, the support staff came in and gave me info in wheelchairs.
I was put on massive doses of steroids.

That was almost 10 years ago.
I DO NOT have MS.
I have Lyme Disease.
Lyme causes lesions on the brain that show up on MRI's
The steroids made my lyme disease incurable.

It seems that the lack of a rash was why they jumped to MS

Had they not relied on their "College book learning" Maybe they would have thought of LD.

I have AS. My evidence gathered over years led to this conclusion. I always knew what it was. Now it just has a name.

You don't need a diploma to diagnose yourself.
You may need one to treat, but not to diagnose.

A lawyer who represents himself may have a fool for a client, but he can have all of the evidence to know if he is guilty or not.

I don't have to prove my diagnosis to you or to anyone else. I don't want a handout from anyone. I don't want to get any special treatment.
I just want to understand that there is a reason for the way I think and act.
I am not stupid, as I had been told.
I am not a liar, as I had been told.
My way of seeing things is just different from the way most people see them.
I do not have to try harder to fit in. It won't change things.
I can understand who I am and that I may have to adjust to see things the way most other people do.

Asperger's did not even exist in the books that gave you the diagnosis until 1994.
I did exist before 1994.
If the psychiatric establishment were to decide to eliminate asperger's from the texts tomorrow, would your diagnosis be just as valid? There are no recognized experts on non-existing things.
Asperger's is only a word. An adjective describing a set of symptoms attributed to a specific syndrome.

Do you think that no one has ever faked the symptoms and gotten one over on the Dr.s?

I personally came to this conclusion after employing similar methods to those I learned studying chemistry and biology. I had a theory, I searched out relevant data. I tested hypotheses. I eliminated irrelevant factors. I used all of the information at my disposal. I came to a conclusion based on fact.
I do not claim to be a doctor.
I didn't put the conclusion in a chart.
This does not mean I jumped to conclusions.
Self-diagnosed simply means just that.
Now, If you want me to diagnose anyone else. No way.
I have not lived inside their heads and lived their lives for almost 40 years.
I would not be qualified.

Bravo.

Then again, black and white thinking is commonly thought to be an unwritten criterion for adult diagnosis...

GreyGirl, do you by any chance live in the north? I ask because I read an article that discussed increasing mean temperatures in North America being responsible for ticks being common in parts of the Northern US and into Canada where they were previously unable to survive. The article said that there was a lack of Doctors in those areas able to recognize and treat Lyme disease, because it had been previously highly uncommon.

Also, yes, bravo on the other statements!

Fnord, migraines are closely connected to seizures. It's not just a very bad headache but can leave people temporarily blind, paralysed, without speech and make them vomit.

I have symptoms all across the epileptic spectrum but because I don't lose consciousness, am not a danger to myself and can eliminate all the triggers from my daily life (to a degree) I don't need to be diagnosed. Although one day maybe I'll have to.

Let the self diagnosers be. I used to have a beef with mild AS but then I realised parents of severely autistic kids would doubt I had autism because I'm high functioning. It happened to a friend of mine. I remember how lonely it was and confusing and frustrating it was to try to fit in with people and monitor and modify behaviour to make them happy. Then when you find out the reason it's like a whole weight off your shoulders and you may no longer care about making people happy but finding people that accept you. And having a whole community here who experiences similar things and you can go to whenever you feel the need, it's just a very comforting.

I've self diagnosed myself with conditions that I've later thought I didn't have. Being diagnosed autistic and ADHD is enough for me.

Fnord has been asked much the same thing in at least one other thread before and never gave an answer. It's a belief thing for which there is no evidence. When it gets to that point it's time to give up debating.

Even if his preposterous ideas re self medication were true, it would have no bearing at all upon a persons ability to self diagnose.

As far as self-medicating, goes, I did a lot of self-medication before I knew I had anything. Alcohol for certain kinds of social occasions, and ephedra to mitigate my executive function problems. Self-medication is something that can easily happen in the absence of any kind of diagnosis or awareness of potential diagnosis.

I'd just like to point out that most of this banter seems to be spawned only over "mis-matched dictionaries." When I use the term self-diagnosed, I am using the definition in that 'Diagnosis is the identification of the nature and cause of anything.' When I went to look up the medical definition of diagnosis, you may be surprised to find that nowhere does it state who fulfills the role of the person diagnosing.

I don't intend the original poster or many others to see this point of view, but hopeful some on here who have been offended can take solace in this for themselves.

In my opinion, the original argument seems overly provocative in its presentation and response, even having had good intentions and with the result of the sharing of information.

Ive got a slightly different take on this...I live in a remote part of Australia and (to my knowledge) dont know any other Aspies. I was diagnosed earlier this year, although I had suspected it was Aspergers for several years (since a type of breakdown a few years ago).
I only came onto this forum after the diagnosis and it took me a while to work out that people were calling themselves "Aspies" without a formal diagnosis.
My question is this, if I come here to attempt to connect with other "Aspies" and yet it is possible that a large percentage of people on here have incorrectly diagnosed themselves, then what is the point of the forum?
It seems that it is considered heresy to say, "well maybe there should be a separate space for those who actually are diagnosed" but Im gonna say it anyway.
I come on this forum looking for some kind of intelligent conversation from people that I can TRUST have some idea of what I am going through and mainly its just interminable "Do you think I have A/S?" and "Sometimes I scratch my left butt cheek with my right hand, is this a sign of A/S" If the forum is mainly (as it seems) dominated by the self-diagnosed then it becomes farcical and any advice /opinions I solicit here are meaningless to me.
It seemsto me as though the self-diagnosed people are hijacking the site and are absolutely outraged at any suggestion that they should get a diagnosis. Well fine, dont get one, but then why be so outraged if anyone questions your right to be on this forum?

Use your judgement. If you can relate to someone, you can relate to them.

When you next log onto the site please read the following blurb:
"Wrong Planet is the web community designed for individuals (and parents / professionals of those) with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences. "
This seems to be more inclusive than you are suggesting and I'm afraid not only about those with a formal diagnosis of AS.

The point is that the forum provides a place for people who believe they are on the "wrong planet" to connect with others of a like mind and to share experiences and information.



Maybe you're right. But how is that to be policed? What's to stop me changing my status tomorrow to "diagnosed" and then getting access to the exclusive forum? Also, don't you think that a separate area would deny many people of much needed help and information?



I agree with you about some of the crazier theories as to the signs of AS as you humorously point out but I don't think crackpot ideas are exclusive to the self-diagnosed. Being professionally diagnosed does not bestow a rational mind where there was none before. Anyway, you and I may feel they are far out but people still need space to explore ideas.



Like with anything else in life it's up to you what you believe. There is indeed lots of meaningless advice out there. Use your own sound judgement to seperate the wheat from the chaff.



Seems to me the outrage is all on the other side

Why and why not people get a diagnosis has been discussed a million times on these forums. Everybody's circumstances are different.

Are you really that concerned that someone who thinks they might be autistic isn't actually autistic? Do you think it's likely this forum is overrun by such?



I've been here for nearly 13 months and I read hundreds of threads before I registered, and there's more to this than "Do you think I have AS?" I don't even read those threads because I usually can't answer or interpret them, and I still find a lot to read and respond to. And that other stuff is not all "is this a sign of AS?"

Also, this is just one subforum, and there are several others for discussions of relationships, social skills, adult living, adult topics (two very different things there), hobbies, a members only subforum, a political and religious debate forum, and so on.

Yes, several regular posters are self-diagnosed, and several are officially diagnosed. Some were self-diagnosed and are now officially diagnosed. This does shape the forum culture, but not in the sense that the majority of discussion is by people who incorrectly think they're autistic.



This assertion is downright bizarre and conspiratorial. Nobody's hijacking the site and the site was never established so that only autistic people could use it. If the intent were remotely what you're suggesting, the diagnostic status drop down would give you two options: Diagnosed Asperger's and other autistic spectrum disorder. If you're not a moderator and you're not the owner of this forum, it really isn't necessary or appropriate to question other people's right to be on this forum.

I also think that you don't really understand the difficulties involved in getting diagnoses for many people. Those of us who have one had access to insurance or money to pay for an evaluation or who live in a country that provides health care coverage to the entire population, and had access to a professional who was willing to determine whether or not we were on the spectrum. Many people end up seeing professionals who say things like "You can't be autistic, you don't act like Rainman" or "You're too smart to have AS, autistic people are all intellectually impaired" or "You're capable of eye contact, you can't be autistic" and so the litany continues. Also, in the US, getting an official diagnosis can cost people their insurance - their premiums go up and other providers won't insure them because they have a "pre-existing condition." Temple Grandin - a prominent autistic author and speaker who also happened to overhaul much of the livestock processing in the US - suggests that adults not get diagnosed because of the potential negative consequences of having a diagnosis.

I certainly didn't get a diagnosis to satisfy anyone on this forum (and in that regard, it is impossible for me to care less about anyone being satisfied by my diagnostic status), I got it because it won't risk my access to medicaid, which I have in the first place because I am disabled and unable to work. I do, however, need a record of medical and mental health care to provide during my SSI appeal hearing, which means I need to establish that history of treatment in the present, part of which included identifying and diagnosing what I have.

No one should feel compelled to get a diagnosis to satisfy anyone on an internet forum. This place is just not formal enough for that and was likely never intended to be formal. You can still ask your questions and find the discussions that can help you, and you aren't required to participate in threads that won't be of any use. If you really feel you can't function in a forum that allows self-diagnosed Aspies to post, then you might be better off finding some of the autistic bloggers who is hostile to self-diagnosis. I am pretty certain that "autism gadfly" is one such blogger.

^^^^^ This is so simple and has worked for me here for the past 13 months. It seems to work for others as well.

I want to echo what nemorosa said before the outrage goes further - people havealready posted. The poster is projecting onto readers that they should be outraged by the time they finish the article, in response to the author's own suggestion that the reader has no right to be on the forum.

Please, if the person has outraged you, ignore them. They cannot judge any one of us from a keyboard.