Critical of self diagnosis - you shouldn't be

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Just reading about the Seinfeld self-diagnosis in the banner paragraph with the footnote comment about many people being critical of self-diagnosis.
This is really beginning to annoy me.
Our lives are a journey of self exploration surely we can discover things as intelligent adults without having to get them officially stamped to become true?

Can I just put this idea forward about the pitfalls of `official` diagnoses:

Official diagnosis criteria is decided by a committee of peers `experts` (99% of whom will not have an autistic condition).
What is diagnostic today may not be diagnostic tomorrow...... We are still learning!

For example I have aspergers but have intense feelings of emotion and empathy for others at times (read discussions of aspergers actually being hyper-emotional not un emotional)
However official diagnoses do not allow for this truth....... Many professionals are not even aware of this discussion by users and are behind the times.

Therefore Official diagnoses too can be (is) flawed and our understanding is changing all the time.

So please do not be so snobbish about self-diagnosis I believe as we find out more and more about autism we will discover our views (and present diagnostic criteria) are incredibly shallow.
We may look back and laugh.
(perhaps laughing hysterically.... Hysteria itself was a diagnostic categorisation of an affliction of women due to the effects of their uterus which is totally ridiculed now .... and that was `official` for over 2000 years! ...)

A lot of people are sensitive to self-diagnosis because they feel it belittles the struggles they've gone through as a result of their own personal diagnosis. From the outside, someone reads an article about asperger's on the internet and applies it to them. Just having a little bit of social anxiety or confusion in social situations, people like to slap the autism label on themselves. It's a lot more than just being a little socially awkward. It's a lot more than someone's significant other being emotionally distant all of a sudden. So, when someone reads an article and realizes they hate eye contact and diagnoses themselves, people are quick to feel like their experiences with autism are trivialized. Myself, though, I just try to help steer people to the right resources. I'm simply happy someone takes the time to research autism.

Ditto.

I might add that Mr. Seinfeld has made a subjective "diagnosis", which is automatically suspect. Symptoms of an ASD may overlap with those of other disorders, such as the various forms of depression; and some of these other conditions may alter perception, especially how individuals perceive themselves.

While any individual is free to make any 'diagnosis" they chose, only appropriately-trained and licensed mental-health professionals can make a valid diagnosis of an ASD. And while the epitome of convenience, on-line tests can not provide an objective ASD diagnosis, and should be (in)validated by an aforementioned professional.

Also, people may have fallen into believing Mr. Seinfeld's "diagnosis" for no other reason than their own admiration of him.

I agree with the original post and the sentiments expressed in the other replies. Indeed, many of the 'best' (imho) posters on here do not have a formal diagnosis for a wide range of reasons.

In the UK, getting a free diagnosis on the National Health System is possible but can take forever and a day. The cost of getting a diagnosis privately is excessive - I paid £800 - which on today's rate is $1253.56 US - for something I already knew to be the truth about my way of being. Having my diagnosis of Asperger's Syndrome helped me to understand why I do, and have done, some of things in my life, but my disclosure was also the catalyst for me being made redundant from my last job. It is a double edged sword.

Mr Seinfeld has no reason to make the disclosure he did given he is financially secure for life and apparently a popular entertainer in America, I must confess to not finding him particularly funny on the few occasions I watched his show here. But I do recognise the signs of somebody on an intense search for self and answers and ending up talking publicly or to strangers about it! Embarassed

It is all a little bizarre to me as short of posting my report and a signed affidavit from my Psychiatrist - how does anybody 'know' what I, or anybody else for that matter, assert to be the truth. Even then it could easily be faked. You do not live with me or see me at my lowest or most stressed and 'twitchy flappy' nor do I know you reading this or Mr Seinfeld. I will, however, take him at his word that he feels neurodivergent, like a great number of people on this forum. I hope he finds the peace of self acceptance that sadly many people do not.

I guess it depends on how you view autism.

There's a difference between
a) I have a lump on my breast, therefore, I have a touch of breast cancer;
b) I have a lump on my breast, therefore, I will see a doctor because I suspect I might have breast cancer
Both involve the exact same observation, a "self discovery" observation, but one makes way more sense than the other.

People are often advocating for mental illness (which, BTW, I know Asperger's isn't) to be treated more similarly to a physical illness. Now if people actually want that, then they need to start treating it more like one too. I do not believe people should diagnosis themselves with clinical depression, any more than I think they should with cancer. Sorry, but I actually think clinical depression needs to be taken seriously, as seriously as a physical illness.

The diagnosis of physical illnesses has changed a lot too over the years, but if everyone just decided for themselves what the hell was wrong with them, a lot of people would be treating themselves wrong for their actual condition.

As far as Asperger's goes, I guess if it's just a "way of being" then no diagnosis is needed. However, if you view it as a disability, and you want that disability taken seriously, you need a diagnosis. While you may be in the first camp, you have to appreciate that people who put themselves in the second camp have experiences which are definitely no less legitimate than yours...

Self-diagnosis is not inherently negative, but it can undeniably turn sour in the wrong hands.

I have witnessed many times, a person (typically adolescent) that has self-diagnosed themselves with depression, ADHD, OCD or even Asperger's. It's very common to feel different from those around you because you judge others by how they act but only yourself by how you think. Youth is the prime period of human identity confusion, and almost all people struggle through this.

As a person with OCD, I can't tell you how many times I've read things like this:

. 'OMG I'm so OCD! I can't stop thinking about my cat eating my shoes!'
. 'I need to know exactly what time it is when I wake-up. OCD is so annoying.'

Though these two examples in particular may seem like a joke, spark up a conversation with such people and you will find that they actually do believe that they have OCD.

Additionally, conditions can mimic many others. Look to Kim Peek for a famous example.. everybody thought he was autistic, and it was only recently found that he truly was not.

Of course it is possible that somebody is accurate in self-diagnosing themselves. I completely understand if a person does not wish to spend thousands of dollars obtaining a professional diagnosis, and/or are so content with their own understanding of self that they need not bother. I can actually relate to this, as I am gay. I do not need an outsider to confirm my sexuality, but that does not take away the fact that so many are confused with their sexuality and may consider themselves to be homosexual or more commonly bisexual (albeit temporarily).

I do disagree that the experts not actually being autistic themselves compromises the validity of their professional opinion. Simply because a person is autistic, does not mean that they know everything about autism. If that were true, there would not be so many threads asking questions such as 'is this a stim?' on this forum.

_________________
Unapologetically, Norny.
-chronically drunk

With all due respect, I will always be somewhat critical of self-diagnoses. Nothing against the person, mind you, just about the fact that a lot of people tend to read stuff about Asperger's and then suddenly seem to identify with the symptoms without having a qualified person giving their input.

If I thought I was in imminent danger of dying from Asperger's, I'd get an evaluation at once.
Or maybe I still wouldn't, as there's no treatment for it, anyway.

It seems to me that there are two primary routes to diagnosis.

1) Someone tells you that you should get assessed, perhaps even that some of your observed behavior is consistent with autism. If you are a child the next steps are probably decided for you by your parents. If you are an adult you then have a choice. If you chose to educate yourself about it and find out why they think you are autistic you then move into the same situation as someone on the other path to diagnosis--you have the choice to get this idea confirmed or rejected by a professional.

2) You have some reason to read up on the criteria and begin to wonder if you don't fit. Depending on the degree to which you think you fit, you may at this point conclude that you probably are autistic.

I had both experiences, but was so unready to hear it that I did not understand or believe when people flat out told me and dismissed even the possibility from my mind. Later when the school pushed me to get my son assessed, I read up on it, and finally put the pieces together.

I went through a period of some months of deep introspection and research and then self-diagnosed. I wanted very badly to get this very strong suspicion confirmed by a professional or to find out what else might account for my self-diagnosis and the times that others on the spectrum had tried unsuccessfully to tell me. I found people in the area who might assess me, but learned that this would cost $2,000 to $3,000. I then learned from my insurance company that no part of that would be covered, because the many tests involved are not actually diagnostic for autism. I simply did not have the money.

I tried volunteering for research studies to get a free diagnosis, but learned that I am too old for most of those. After months of searching, with the help of people from WP and GRASP, I found a doctor who would do an assessment for $600. I could not really afford that either, but it had to be done.

I was diagnosed with Aspergers Disorder under the DSM IV just before DSM 5 became official, I was told to think of myself as a person with ASD and accept that this was behind the many difficulties and differences that permeate my life.

Now that I have that diagnosis, should I tell others who are in somewhere in the middle of dealing with awareness of their own possible autism that they can't be right? That it can only be real if it's the observation of a professional? This makes no sense.

To those who say, "but they diminish my struggles by applying the labels to themselves" I can only say that this may or may not be true--you could be right in some cases, there might be people with very mild symptoms who are neurotically attached to the idea of being different and are making a connection that isn't real.

But it's also possible that those people are struggling with challenges you know nothing about. You look at their most controlled external persona and think they have it together, but have no idea how hard they work to maintain that look and how much they struggle in areas of life that you don't see.

I submit that there is little cost in giving the benefit of the doubt to the self-diagnosed person in such cases and you may avoid actively harming someone who needs help by erring on that side: If you presume that all self-diagnoses are wrong, you may really hinder a person who needs help. But if you presume that all self-diagnoses are probably correct, the worst that will happen is that you treat someone with respect despite an error that they have made. Not a huge problem.

I don't think it's a valid argument that people who claim the autistic label and whose symptoms are mild somehow diminish the idea of autism as a problem. Autism is heterogenous. The presentation in one person is not the same as the presentation in another. If there is an area where you need accommodation, just using the label is never going to be enough, because what one autistic person needs is different than what another autistic person needs. The only way to get understanding from others about your particular issues is to tell them with some precision.

People often try to make light of the disabilities of others because they think that is being kind, or because they don't want to be bothered to make accommodations. or because they don't understand what they have been told and don't want to believe the universe works that way. Pushing to have the label mean "severely disabled" will not change any of that and it is not an accurate portrayal of the spectrum.

I have no problems with any average Joe self diagnosising, especially here on WP.

I have a HUGE problem with someone like Jerry Seinfeld, saying he *may* have autism.

Jerry, your are worth 820 million. Quit being a f*****g tourist, and get it checked out. This guy could private pay for the best diagnostician, and fly that person on his private jet for an in home evaluation.

A tourist is someone (who has the resources to ger help/treatment), and says

I have a touch of OCD.
Oh, I get manic now and then.
I take things literally, and have trouble in social situations, I must be Autistic.

Whenever I hear a celebrity talk like that, I wonder a) oh you need face time in the press or b) a new project is coming out.

That's why I truly appreciate a person like Darryl Hannah, she was diagnosed and then disclosed. That has much more street cred to me.

Whatever, you people. I have my reasons for suspecting I am on the spectrum. You have not lived my life. You have not seen how I am different from most of my family members (although at least one is on the Spectrum FOR SURE.) You have had your own struggles throughout your life, and I have had mine.

I am not going to write an autobiography to prove to all of you (as if you are the experts who can diagnose) that I belong there.

The fact is that the reason why I function well as an adult is because 1) I had great parents who in their own way trained me to live in such a way to minimize some of my difficulties, 2) I have a wonderful, understanding husband who puts up with A LOT, and 3) I have *designed for myself* the kind of life I want that *just happens* to be good for Aspies. If you go read the thread on "what kind of life would you like to have?" and read the majority of answers - that's my life. I have built things in a way preferable to me which minimize the fallout from being on the spectrum.

I know well what a shutdown is, what a meltdown is. I have dealt with the ramifications of those. I know what it is like to have no friends.

I could go on, but the ASD police won't be satisfied anyways without that special stamp of approval one can only get with $ and an expert.

Tawaki, did you actually hear or read what he said?

It amounts to more expressing the idea of a broader autistic phenotype than self-diagnosis.

He said "I think on a very drawn-out scale, I think I'm on the spectrum." Since he doesn't see it as a disability, the traits he associates with autism and finds in himself would be subclinical.

In doing this he has not said that any autistic person can do what he does, or that others with more severe symptoms don't really have severe symptoms.

He isn't the only person who sees that the traits extend into the NT population in a broader phenotype. Why get so pissed at him for saying something that is a fairly widespread idea among people who study autism?

I'm not sure of the exact circumstances under which it was disclosed that Jerry suspected he was on the spectrum, but I agree with your general idea (minus the anger). When somebody else has a mental condition/disorder and reveals that to another person, the other person will not know their true struggles and may assume that they have something like bipolar or ADHD as well. It is extremely common.

As Jerry is famous, perhaps another bunch of people will now consider themselves to be on the spectrum, as all everybody has known of him is a funny, geeky sort of guy. I have no problem with him disclosing the information but if his assumption is incorrect and it causes others to self-diagnose although incorrectly, I don't see how that can be considered positive. It's the nasty side of self-diagnosis. There are obviously positives about self-diagnosis but it's impossible to feel cautious about it due to such reasons.

It's an issue that doesn't really have an answer, only multiple conflicting perspectives.

If a person is certain enough to self-diagnose and does not feel the need for professional diagnosis, they are more than likely going to be threatened by negative claims about self-diagnosis. This may be because they are offended by the notion that a professional should know themselves more than they do, or it could be because it stimulates an oppressed fear that they may be wrong about themselves. If a person is against self-diagnosis, it would likely be because of a group mentality (simply copying others) or if they actually had a reason, because it is so often incorrect (and this is perfectly valid). Rational people that are against self-diagnosis are not against those that self-diagnose, only the general concept.

It's very much like my personal decision to never get a tattoo. I don't dislike or disrespect a person that has a tattoo, I am simply against tattoos for my own reasons: I don't want to risk a mistake or regret my decision someday. It only becomes dangerous when a group mentality kicks in, where a more irrational person would be completely against tattoos (and likely dislike those with them) purely because others have expressed distaste for them. Without a valid argument it's wise to ignore whoever speaks against it.

With that said, professional diagnosis is not necessarily correct either. However, that does not takeaway the fact that self-diagnosis can easily go wrong.

_________________
Unapologetically, Norny.
-chronically drunk

I Think we can benefit when more people see a spectrum that they are part of rather than segregating autism as something frightening and dangerous and part of autism being acceptable is letting it not have to be so awful.

I also feel it's potentially demeaning to critique who someone sees themself to be too much and I don't think we should be doing that over the fact that someone has been able to accomplish a lot yet thinks they may be BAP or on the spectrum, that I think can really be demeaning to us all.

I think I've only had a problem with ONE person, on here, who self-diagnosed. The reason that I had a problem with him is because he came on here and argued, INCESSANTLY!! I got the feeling----as did, others----that he was only here to get his jollies out of gettting people worked-up. He disappeared as quickly as he had appeared.

I think most of us can tell when people are only "playing" at relating. Those that come here that are truly troubled / concerned / whatever, and self-diagnose, I don't have a problem with them, because they are doing their research and using every resource they can find, etc.

I DO have / have had a problem with several people I've met, in person, who self-diagnose with OCD. Every single one of them, I feel, was using that label to excuse their "Control Queen" behavior!! That is NOT what OCD, IS; and it really, kind of, angers me!! ! They did, IMO, have some kind of problem----BUT, my theory is.... We try to control everything on the OUTside, when we can't control what's going-on, on the INside!! ! Again, NOT OCD!!

I could not agree, MORE, with the OP, and subsequent posts that have stated that diagnostic criteria, etc. (hence, BOOKS) can be faulty. One of MY mottos, is: "LIFE AIN'T IN A BOOK----AND, if non-fiction books were all facts, all-the-time, man would not have had to invent the term 'Revised Edition'"! !!

Thanks for starting this thread, it's one that I realise I have waiting for, and I am right with the OP and Skilpadde on this issue, and the OP has written some of my thoughts (are you telepathic!)

As an older person when I self-diagnosed, I had known myself for a very long time - far better than anyone else could at a single encounter - and I had relevant qualifications to assess my situation. Perhaps it is different for much younger people with less life experience and less confidence in their own judgment. Confidence and judgment tend to improve in the later decades of life. But even if I had not had relevant qualifications, I have very good observational, pattern detail and analytical skills and was often told in my working life that they were outstanding.

I certainly did not decide on the basis that "oh I am supersensitive to noise, I must have Aspergers!" If someone said to me here. or someone like me here, or implied it, (and I read comments relatively often here in that vein)"you just think you are ASD, they would cause significant offence. Essentially these commenters who don't know me, will never meet me, are making judgments about my perceptual, analytical and intellectual abilities to evaluate information, my life experience and education, my symptoms and history - all of which they know nothing about, just as they know nothing about my experience of my symptom history and its effect on my life.

One size doesn't fit all! If you need help with diagnosis, and only trust professionals, or need it for a government benefit, or just want to do it - good for you. That doesn't licence you to criticise, put-down, caution or "warn" people who self-diagnose.

What I do find completely missing from past threads where the anti-self-diagnosers have posted about the necessity of "professional diagnosis" is the lack of knowledge about misdiagnosis rates in medicine - very good studies have been done. Meta-analyses inform us that a conservative estimate is about 38%. We also know that the rate of psychiatric misdiagnosis is higher still; (not that ASD belongs in that category, but for some reason some people here feel that psychiatrist endorsement is the way to go.) Given that the rate of misdiagnosis in that field is higher - and that the psychiatrist has no intimate knowledge of your life and will assess you in an hour say - what do you think the chances of being misdiagnosed are? And yes, also 1) the criteria shift and change from time to time, 2) they may not have any knowledge of the criteria anyway, and 3) some will equate the failure to make eye contact automatically with schizophrenia (sadly true, I'm not making it up). I've been at staff conversations where that observation has been made by senior psychiatrists.

I can imagine that the relief of receiving the diagnosis - when it is accurate - is similar to the relief I felt when I self-recognised. So go that route if you want to, I'm not saying you should not. Please stop the superior pontificating directed at the self-recognised who don't share your opinion and way of doing things, or at least reflect a bit more about why you have this need to do it - beyond wanting to "help" them.

Finally a word about Seinfield: some people who insisted that "expert" diagnosis was the only valid avenue in the context of that debate ironically felt qualified themselves to diagnose him as not having ASD. They could diagnose others? But not themselves? Weird Planet...