What do you think about self-diagnosis versus doctor approved diagnosis?

[Mia]

I've gotten the impression that self-diagnosis is somehow fakery, or pretending to be an Aspie from certain posts on the forum. That I am not a 'real' Aspie until a Doctor tells me who I am. So what do you think about this perspective?

Should you only rely on professionals? Many of whom have mis-diagnosed women and men with hysteria or bpd or schizophrenia?

Could people who have existed/passed in society as normal be diagnosed after a lifetime of enforced socialization to fit in, or would the veneer of sociability have to be peeled away to uncover them?

 

[Kari Suttle]

Yes i've got the impression that having a doctor's diagnosis does provide validity that self-diagnosis does not. But i'm not in a place to get a doctor's diagnosis and quite frankly i'm not convinced that there are many doctors in my area that would even be able to properly analyze me for high functioning autism (formerly aspergers syndrome) as an adult woman. I don't want to jump at the first doctor i can afford who is nearby only to get told no i dont have it because its a fad diagnosis or i'm a woman or no your just shy or no you only have social anxiety. Cause i could easily see all the above happening without just the right doctor.

 

[On the Inside]

If the shoe fits wear it, I say, as long as you don't plan on using your self diagnosis as an excuse. But if you really want to know, a diagnosis from an experienced clinician helps to clear things up. I was fortunate to be assessed by a regional Autism service provider and have the assessment paid for by my health insurance. I have no need for a diagnosis other than knowing, so that I could rule out other possibilities and target my therapy efforts. Earlier, I had been diagnosed with ADD-inattentive and was prescribed a medication which I was extremely happy to discontinue. I was getting increasingly uncomfortable with what my problem might be, so a diagnosis helped me in many ways.

 

[BlueConundrum]

I have self-diagnosed as well, but I am seeking professional backup.

I understand why people are against self-diagnosis. However, there are so many problems with the healthcare systems of various countries, and not getting corroboration from a professional does not make a condition less valid. If you have cancer, your cancer exists even before a professional spots it.

Years ago I read about Avoidant Personality Disorder and I thought I might have it (there is high comorbidity between Aspies and people with AvPD). I never mentioned it to a professional. After months of therapy, I got my records together for my disability application. What do you know? I had been officially diagnosed with the disorder I thought I had.
My opinion was right in line with an unbiased professional.

I also knew exactly what thyroid disorder I had before blood tests confirmed. I had been to multiple doctors who told me I was wrong, but then I had a DEFINITIVE blood test.



I signed up for an Asperger's Meetup group in my area, but I'm nervous because I don't feel "real". My therapist (my last EVER appointment with her is tomorrow) is the only one who has believed that I could be right about Asperger's.

Basically, there are many layers to people and there are many layers to autism. A lot of professionals might have trouble looking at things objectively, no matter how socially aware they are.

I've become a decent faker at being normal, so a lot of medical professionals have blown me off entirely.

I understand the self-diagnosis route, even though I, personally, am uncomfortable with it. BUT I have suspected numerous things wrong with me and I'm generally always right when it comes to things about myself. It's almost as if I'm self-aware and know what's going on with me!

 

[RidingDutchman]

The problem that I see is that many NT's recognize symptoms but underestimate their severity and so they might think they have it too.

"Hey I'm kinda smart but socially awkward, I sometimes take things literal, am scared of change and get annoyed by some sounds. Hey I remember this time where I was really into a hobby and sometimes I don't fully understand what other people mean because their body language is kinda vague. I also don't like being in really busy places, and get annoyed if things aren't clear, this fits aspergers so I'll probably have that"

Self diagnosis can be very valuable in a degree to where you can spot possible problems so a professional might have an easier time to search in the desired direction.
Every time i talk to people about aspergers, all they have to say about the symptoms is that "I have that a bit as well"

It is really easy to get into an attitude of hypochondria if you don't exactly know what you are talking about. Pretty much all NT's can be convinced they are rigid thinkers, but in a totally different depth as some autistic people can be.

I'm not trying to tell people with self diagnosis that they are being hypochondric, just saying that there is a danger for it to happen if you aren't careful, and people have a tendency to act towards their label so it might be a negative thing.

On the other hand, if you have similar problems as an aspie but don't have aspergers, I still welcome you here and want to help you with your issues. Being an aspie or not really doesn't change how tough your problems are.

So I'm not against self diagnosis, it can be really valuable up to a point but it does need some care.

(Being a home doctor can be really dangerous and many doctors even think it might become a big healthcare concern for the future, or so I have been told by one)

 

[Nacho]

I don't know why but I find this thread extremely hostile, probably because I am (still) self-diagnosed, even though I'm under review of an specialist right now.

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

 

[RidingDutchman]

I don't know why but I find this thread extremely hostile, probably because I am (still) self-diagnosed, even though I'm under review of an specialist right now.

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

None of this seems particularly hostile to me, let alone extremely, unless you feel attacked by my text and in that case I'm sorry, again I'm not saying there is anything wrong with it, only that people have to be careful with it.

I do really agree with the second part you say, you are you, whatever the label is you might or might not have, same for me, same for anybody else

 

[Ste11aeres]

I don't know why but I find this thread extremely hostile, probably because I am (still) self-diagnosed, even though I'm under review of an specialist right now.

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

I don't think that anyone who has posted on this thread would disagree with you.

 

[Mia]

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

I agree Nacho. I am also self-diagnosed, and discovered it inadvertently while visiting this site. So my two degrees, one of which is in science, and a lifetime of social difficulty are no indication of a diagnosis as far as many people are concerned. Nor the fact that my younger sister is autistic and likely my Mother was as well.

I am so unaware that I am unable to understand myself and my own difficulties through my almost sixty years of life. I must have a Doctor diagnose me to verify what I know to be true, so that others will understand. Otherwise I might be a hypochondriac and imagine it along with any other difficulties I come across on the net.

I find this pathetic and sad, and as you mentioned Nacho I am still the same person I was before diagnosis. People who self-diagnose know more about themselves than most, understand more than most obviously, and they also have more understanding of their own difficulties they don't need someone else to tell them.

I am near retirement, I will not be applying or receiving any pension related to a disability, neither will I 'use' it as an 'excuse' as so many people mention here for not living and not doing things. It is a way to understand myself.

 

[gonzerd]

I don't know why but I find this thread extremely hostile, probably because I am (still) self-diagnosed, even though I'm under review of an specialist right now.

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

I can see how you might feel a little insecure about this, but I'm sure nobody's is attacking you or doubting your self-diagnosis here. It's a process a lot of us have gone through. I was more or less self-diagnosed also before receiving my official diagnosis, which came more as a confirmation of my own suspicions/knowledge than as a surprise. And while getting an official diagnosis doesn't really change one thing about who you are, it does usually bear more weight when it comes to receiving additional help, or just finding acceptance from those around you. (Although to some it doesn't matter one bit and they'll keep scrutinizing, no matter where the diagnosis comes from.)

Anyway, there will always be people who misdiagnose themselves as well as there will always be professionals who misdiagnose for whatever reason. It's the way of the world, people make mistakes.

I'm sure autism getting more attention has an effect on the amount of diagnoses issued (self or official), and some will be false positives, which in turn will have an influence on how autism is perceived by public opinion, which is probably the fear that's at the root of this debate; that those who have been misdiagnosed become the ones who are listened to most, or come to believe that they've found a cure or so and therefore we should all be cured or we're just not trying hard enough and all that crapola.

But in the end, it's not some kind of competition of who has it the worst. Official diagnosis or not, what matters is that people find the help they need, or the right ways to cope with whatever troubles they experience. No matter what neurology, we can always learn from each other, in similarity or difference.

 

[Nitro]

I was first self diagnosed and used it to point it out to my braniacs who were concentration on a totally different aspect of my brain condition. I would like to think by now there are many professionals who would benefit from self discovered individuals showing them that interpretations of a condition are at times useless if they are not experiencing them first hand. I have studied enough of my own condition by now to write a book about it,but there are so many facets of autism spectrum disorders that it too would be of little use to the next ASD case for proper procedures and identification of their individual experiences.

There at times can be a lot of validity to one's own diagnosis,but it is of little help when seeking support because it lacks a pro's signature. It is important to point out as well that I sought no support for my lifelong condition,it only gave me answers to why I was like I was. I had some pretty good brain specialists who missed some pretty major stereotypes that were right in front of them in full play,but ignored as they worked on repairing a traumatically injured brain instead of looking at a bigger picture. I feel as an honest opinion that many who are a part of spectrum diagnosis are not really qualified or have very open or myopic views of their craft that either enhance their work or hinder the progress of proper diagnostics that ultimately leaves a client on the outside looking in or misdiagnosed.

I was a part of an explosion in a thread on this very topic and really had to think long and hard if I wanted to be a part of this conversation,but once again,here I am posting my personal opinion that either way a person is diagnosed,it should not matter if they are personally satisfied that they have reached the correct answer they sought.

AspiesCentral has always had a policy that any form of diversity,self-diagnosed or not was welcome here along with any neurotypically inclined brains. Let's keep it that way

 

[DogwoodTree]

I'm self-dx'd and have decided to stay that way for the time being. I'm not announcing this (the AS) publicly, as it might affect my career (somewhat public). I haven't told family other than my DH. It's not really important to me that I fit into a tightly defined box in order to warrant the label. My online test scores have consistently shown strong AS tendencies over the past year since I learned about all of this, and understanding AS has given me a lot of insight into the way I think and behave, and the struggles I have. For me personally, that's really all I need from the label.

This board, in my experience, has been very open and welcoming for the self-dx'd. There's even an aspie group in my area that also welcomes self-dx'd adults. So...that's my experience so far, anyway. NTs sometimes give me that strange look, like I don't have a clue what I'm talking about, with the few people I've told. But whatever. None of them know much about it anyway, so it's not like it really matters. Whereas some of the others seem to have accepted it at face value.

 

[watersprite]

I don't know why but I find this thread extremely hostile, probably because I am (still) self-diagnosed, even though I'm under review of an specialist right now.

I think a diagnosis can make some difference to make yourself feel more comfortable, but I don't think the opinion of a professional will change the way I am now (if I become officially an Aspie, I will still be like I am now, and if I don't, the same).

I am glad that you are here Nacho, as I was in similar situation s you describe about a year ago. Also, I'm glad that AC - the people who are here, including me, welcome, value, engage in discussion with, and see as equal self diagnosed and md diagnosed aspies.

 

[On the Inside]

I certainly don't think having a diagnosis elevates anyone above another, it is merely an outside perspective that can be valuable, perilous or useless depending on your situation.

In my case, while I had heard of Aspergers and Autism, I really didn't know anything about it until it came up in the course of seeking help with high levels of anxiety, sleep problems and a growing feeling of being oddly different, out of step. I guess I was too busy being engaged in my interests, or dealing/not dealing with the effects of my "problems" (ie. wildly inconsistent academic performance, failed relationships, being taken advantage of, being misunderstood, underemployment, substandard living conditions, uncertain future) to have the presence of mind to self-diagnose. Once it was introduced, I set out to research all I could find on the subject, seeing myself in much but not all that I came across. That, along with a formal assessment and diagnosis, has allowed me to accept that, yes, I am an Aspie. I am only recently beginning to see how that knowledge will be helpful to me going forward. May that bring some relief and happiness.

Actually, it wasn't until I dipped my feet in the waters of psychological therapy that I felt there was anything really wrong with me, I just thought I was one of those people who saw the world and existence in a different way than the norm, and that had a strong influence on my lifestyle. Some people like that seem to be able to lead happy and fulfilling lives. In some ways, I wouldn't mind going back to that state of being, as I feel I was much closer to being happy and fulfilled than I am now. Too late for that though.

So, however you get there, embrace the understanding you gain about the problems you have in living this life. It's a tough path, we are here for each other.

 

[BlueConundrum]

I don't remember when I first considered that I might have Asperger's. I remember taking one of the online tests in 2010, but I don't remember what prompted that. I had a very close friendship with a woman and it ended badly, and I later found out that she had an official Asperger's diagnosis. I had never met anyone so much like me in my life. I mentioned it to a doctor and to a therapist and I was blown off. But, like, it took 12 years to diagnose my autoimmune disorder and I have other things that have just eluded diagnosis. Obviously, I don't believe in people slapping labels on themselves willy-nilly. That does happen, but it's rare.

 

[Aspieistj]

I self diagnosed shortly before I retired. Having a "real" diagnosis wasn't necessary for me to gain anything from telling my employer, and I don't think I qualify for any kind of financial assistance. I live off my Social security, retirement, and savings. I had been a teacher first and then an RN. I would like a professional diagnosis I guess because I am an Aspie and I like everything to be official. When I told people I was on the spectrum they all gasped and said that simply wasn't possible. I think they were trying to be nice. There was no way they didn't already know I was weird and they probably believed I felt awful with such a diagnosis. I was relieved by the diagnosis because I have been mistreated all my life because I was "bad" and didn't fit in with normal people. My son went to college with a friend who had become a psychologist and I asked my son to ask his friend how expensive a professional diagnosis was. The friend advised I not bother to seek a formal diagnosis because I had tested positive on more than one online self test. He said the online tests were pretty accurate. I still would like a professional diagnosis but I have revealed my self diagnosis to my medical doctor, and she has since used the appropriate ICD-9 code on my insurance list of diagnoses. Also, I did see a counselor for a while and she also agreed I had symptoms of AS. I just like tying up all loose ends and would prefer to have a professional interview me, possibly test me, and issue a formal diagnosis.

 

[AsheSkyler]

Right off hand, my first thought is that a professional diagnosis is bloody expensive. But I've already had my say on the diagnosis thing: http://autisticleprechaun.raven-wing.net/posts/i-am-not-an-artist.php

 

[Progster]

To many people like myself, an official diagnosis validates a self-diagnosis, confirms what they had suspected for some time. People who learn later in life that they are on the spectrum remain self-diagnosed for a number of valid reasons: a diagnosis is expensive and their insurance won't cover it, it may affect their job or family life, they don't have access to diagnostic services, or they simply don't feel that they will benefit from one and leave it at that. To deny that person's self diagnosis is not to recognise that person's struggles and difficulties, and is doing that person an injustice.

As RidingDutchman mentions, there may be some NTs who see that they have one of two mild symptoms and then wonder if they might be on the spectrum. In my experience, most people who self-diagnose and really are on the spectrum thoroughly and research, become often obsessed with it and join forums like this one, because it's in the very nature of the conditon to do so. An NT who idly speculates whether they are on the spectrum or not does not usually do that. They pretty soon forget about it. I've been on ASD forums for a couple of years now, and have seen many self-diagnosed adults join, go through the process to become officially diagnosed. In 9 cases out of 10, they have had their suspicions confirmed. Does that mean that during the time that they weren't yet officially diagnosed that their issues and concerns were any less valid because they didn't yet have an official diagnosis, and they they should be dismissed as just speculations? No, of course it doesn't. The concerns of the self-diagnosed deserve to be taken just as seriously as those of those officially diagnosed.

 

[NiceCupOfTea]

If you have cancer, your cancer exists even before a professional spots it.

True, but people don't self-diagnose themselves with cancer: the act of self-diagnosis doesn't bring the condition into being if it was never there in the first place. And that's the question, isn't it? Well, for me it is. How many people who self-diagnose really do have autism? At the clinic I got my diagnosis from, I was told that about half of the people get an autism diagnosis; the other half, obviously, don't.

In short, I don't believe that self-diagnosis is virtually as accurate as official diagnosis. I don't know where this unspoken assumption that people can never be wrong about themselves arose from, but it's false. People are wrong about themselves all the time. I'm too sleep-deprived and braindead to go into much more detail than this right now.

 

[Judge]

There's a relatively simple premise seen here constantly. That most who suspect they are on the spectrum eventually go on to have a professional diagnosis confirm it.

However I believe the diagnostic process itself has been complicated and degraded by the transition of the DSM IV's "Asperger's Syndrome" to the DSM-V's "Autism Spectrum Disorder".

Quite frankly IMO this dynamic you're asking is not much different than a person pondering whether or not they are gay. It's a bit more complex perhaps, but basically in the long run who knows us best but ourselves?

I think what is truly important in this case is what truly motivates one to seek a diagnosis in the first place. In my own case, a formal medical opinion would likely change nothing. Not at my age, and where I appear to be on the spectrum. Life has been arduous at times on various levels, but not to any point where I ever imagined requiring public assistance of any kind.