Dangers of Declaration

Post Reply New Topic

The 'critical of self-diagnosis' thread has raised some interesting issues worth discussing.

It could prove very useful to create two threads, with contributions toward each.



The full title of this thread should read 'Potential dangers of declaring oneself as autistic without medical diagnosis'.

(too long to be a thread title, hence adding it here)



I'm not going to contribute to this thread other than creating it in the hope that it provides good material for reflection, and a resource for others.

It would be great to also have a thread 'Potential benefits of declaring oneself as autistic without medical diagnosis'. This may be necessary, for the sake of balance of view.


I'm personally not against suspecting oneself as being x/y/z, as it can lead to seeking out a correct and qualified diagnosis.
Also note the distinction in this thread between believing you are autistic from declaring to others you are autistic.


For the sake of clarity and to avoid confusion, I'll begin by defining the terms of the thread:

Potential - could become a reality, whether in part or in whole
Dangers - negative outcomes, whether it be for the individual or those associated with the individual
Declaration - to communicate to another body (person), via any means, whether it be person-to-person, online etc
Autistic - any term/condition associated with Autism/ASD's, whether they be present or medically historical terms (i.e. Aspergers). This also includes 'having' autism, 'being' autistic etc
Without - lacking (that one should hopefully be obvious enough!!)
Medical Diagnosis - a diagnosis delivered by medical professionals after the medical diagnostic process has been undertaken which will become part of one's documented medical history


It is possibly best to have a list format. Here is a list format, split into appropriate categories. Rather than giving every reason I can think of, I'm suggesting a few for each category. Only 2 categories at present, hopefully this will grow.
By all means add a new category in the reply section.

I'd encourage no 'forum gang wars' - this thread (and the opposite thread which will hopefully be created) could prove very useful for individuals who visit WP.

Note the word 'autistic' of the title could be replaced with any condition.



Potential dangers of declaring oneself as autistic without medical diagnosis


1. Medical Dangers

a) Could be an overlook of a medical disease which presents as psychiatric syndrome

b) Undermines role of doctor

c) Lacking objectivity/consultation of outside source

d) Could be symptomatic of state of denial

e) Likelihood of finding 'worst-case' when searching online (a recent study found that if you search the phrase 'headache symptoms of', the probability of 'caffeine withdrawal' was equal to 'brain tumor'. Terrifyingly, the most serious outcome is given prominence)

f) Undermines medical community as a whole




2. Psychological/Social Dangers

a) Self-assuring

b) Could be based on false assumption

c) Underlying psychological issue (which could actually be the issue) could grow more serious

d) Self-doubt

e) You could exaggerate/restrain certain aspects of your personality in order to 'fit the mould'

f) Countless hours can be spent garnering information from autistics in order to be more convincing with respect to e

g) The label is lifelong - what you tell others will alter their frame of how they perceive you for the rest of your life

h) Friendships and family relationships can be destroyed due to misinterpretation of intentions: family/friends can wish for you to seek a medical diagnosis out of concern which you mistakenly interpret as a challenge of integrity/questioning of self etc. This issue is very serious.

i) Isolation can arise as a consequence of h

j) If you 'change your mind' sometime in the future, you'll potentially be seen as a liar/fraud/delusional etc by those around you and may, as a result, have to move to a new community

k) Individuals will more than likely doubt you due to your own lack of authority to diagnose (which shouldn't be interpreted as doubting you as a person - they are simply - and quite rightly so - doubting your authority as medically trained and capable of full objectivity)

l) Doubting of all others around you, including the medical profession as a whole. There's a good chance you'd be very happy with your doctor if he told you what you hoped to hear, but completely dismissive of your doctor and the medical community as a whole if they told you otherwise.


etc etc

Hopefully this thread will grow to be a resource for others.
Hopefully the opposite thread will also grow to be a resource for others.

Let's not create an 'us vs them'. It would be especially great to see any undiagnosed contributing to this thread, as it would certainly demonstrate objectivity.

Best wishes

I agree that this is a danger. A person may self -diagnose with autism because it seems "best fit" for what they know of both autism and their own problems. There is the limitation that a doctor will have familiarity with far more conditions and can spot things that are a far better fit for something else entirely.



This, as well as (f)'undermines medical community as a whole' I actually class as positives. Yes, the internet has made medical information a lot more accessible which has caused people to diagnose themselves (and research treatments for themselves) without the medical community. This has happened with a whole lot more conditions than autism. Doctors are no longer the sole owners of medical info. While this leads to misdiagnosis and mistreatment of a whole lot of things (Jenny McCarthy famously misdiagnosed her son with autism via internet), even more so it has led people to know far more about medical conditions than was ever before possible. Previously, people were at the mercy of the medical community and nearly helpless. Now that the medical community has been undermined by the internet, people can take greater ownership of their conditions, not having to rely on doctors to parcel out limited information at great expense.



This leads to the danger the person will be wrong. But being wrong is only dangerous if it leads to another and far more dangerous condition not being diagnosed.


But denial of what, exactly? This issue comes up fairly often in threads where a new person will post in anguish wondering if they are autistic or are they just in denial of being lazy/evil/selfish/rude/crazy/a bad person. This is the only scenario where I have seen denial come up. Blessedly these threads always have somebody who point out that autistic vs bad person are not the only choices.


Sure, but this isn't that terrible. If a person with mild social anxiety (as a likely example) self diagnoses with autism then what is the actual fallout?


It needed undermining. Information wants to be free.







so?


It could. The danger is being wrong. Being wrong is not so terrible.


This is the one actual danger. But is the danger self diagnosis or the inaccesibility of health care? This assumes that a person in a dangerous downward spiral has access to mental health care but chooses not to use it because of self diagnosis. But does that actually happen?


no. In fact all the other dangers are predicated on a lack of self doubt.


That could happen. But just as faking NT can't be sustained for long, neither can faking AS.


Wasting time on the internet is the danger not of self diagnosis but of there being an internet. I just wasted 20 minutes making this post. Oh well.


Lifelong? No. People are a lot more forgetful than that. If you tell a bunch of people you self diagnosed with autism, they will roll their eyes at you for a couple months. But according to posts, most people who self diagnose only talk about it in online forums such as this, not to people they personally know.


Yes, there are a few posts about this. But there are considerably more posts about people whose actual doctor diagnosis is disbelieved by family so doctor diagnosis is not the fix.


Consequence? It's more likely the cause. People who are smoothly integrated into the social web aren't likely to self diagnose.


This is just catastrophizing hyperbole. First, it assumes the self diagnosed person told everyone they knew, second it assumes that other people care all that much. They really don't.


The fallout from this is you will post a lot to certain threads and get into disagreements. That's not a catastrophe.


Yes, but so what?

The diagnosis isn't a medical diagnosis. How many people who go to a shrink to be diagnosed go through a proper medical screening first? The majority of Shrinks aren't trained for such things.
The diagnosis is a psychiatric one. So, even with a 'true' diagnosis, most of those medical dangers are still existent, especially for an adult diagnosis.

For links (and some balance to the OP's suppositions here) to the dangers of missed/misdiagnosis, see the "Critical of Self Diagnosis" thread, I posted the references at today's date.

Older members, some of whom are feeling wearied by the barrage against self-diagnosis recently, you may be particularly interested in the newly published and sympathetic book:

"Very Late Diagnosis of Aspergers Syndrome" Philip Wylie, 2014 (Publisher Jessica Kingsley).