Harm and undermining of the self diagnosed on WP

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First, I want to make it clear that this is not yet another thread to debate the merits or not of self-diagnosis. There are already plenty of those, and the hostility shown by some other-diagnosed to the self-diagnosed has resulted in some people, who had made significant contributions to WP, leaving. Those threads are damaging.

There has been little discussion on what harm the hostility does, perhaps because of the anxiety about new attacks from those who dismiss, discount, trivialise and sometimes outright abuse the self-diagnosed. But if you have felt harmed, this thread is for you, to discuss the impact of the negativity which at its worst has been bullying, and even questioning the "right" of the self-diagnosed to be on WP - a right that Alex recently strongly defended.

Just today there was an unfortunate slurring inference (hopefully done without thinking through the possible impacts) made to the effect that the self-diagnosed are "hypochondriacs". How harmful is that? How hurtful is that? Did it make you feel like quitting here? Did it undermine or depress you? What feelings does that bring up? Did it increase your anxiety? Zap your mood or energy? Or were you indifferent and laughed it off.. What do you need as support when these kind of things happen here? If you have strong hurt about this and don't want to post because you have been personally attacked in the past for holding your point of view, feel welcome to PM me, and I'll copy and paste your view so that you can remain anonymous. If you have left but still visit to read, what would it take for you to come back and feel safe here again?

Generally, ASD people hate hierarchies - though the glaring exception is all too obvious, and what the agendas behind that are is another issue you may want to comment on.

I'll say this much. It's not just people that are self diagnosed that those posts effect. I've made several posts lately about some of the complications with my own diagnosis and why it's left me feeling a lot less closure than I was hoping it would. The anti-self diagnosis attitude makes it feel like many in this community are all to eager to judge the validity of whether others are or aren't on the spectrum, which stirs up a lot of anxiety and self-consciousness about whether or not I belong here. I would hope that a community that so intimately understands the feeling of being excluded would show more sensitivity on this issue.

Yeah, oblique insults about my self-diagnosis (and others like mine) have happened to me here at Wrong Planet. I took a week off some months ago to avoid all things WP. When I returned, I was cautious for the following few weeks to avoid the openly hostile topics while also walking on eggshells even in the less-than-hostile topics. My speech was clearly chilled voluntarily as the result of a kind of unspecific superiority that some (I don't even know if they, themselves, had been professionally diagnosed) had shown in their descriptions of self-diagnosed "others." Despite the evidence that exists and shows that certain kinds of ASD self-diagnoses are often accurate, I felt invalid, illegitimate, malingering and less-than-worthy of continue to play a part of WP, let alone a diagnosis whether performed professionally or personally. I doubted my intentions, my research, my understanding of professional literature and even my screening-test scores ("had I consciously or unconsciously faked them to exaggerate my ego?").

Luckily, the week away from WP and its sometimes "wrong planetians" convinced me that I was largely correct in my personal assessment and its ever growing evidence that I do, indeed have AS. Those who insulted me, however unintentionally, did me a favor by causing me to re-evaluate my research. They no longer have any effect with me. I thank them for that.

As for supports to prevent this kind of insult, I would like to see moderators including Alex countering them with his personal opinion and hope that WP is a place for all to feel welcome and included regardless of their ASD status even if that status includes those who only suspect an ASD in themselves. After all, many of them appear to go on to future professional diagnoses, anyway. Why offend those who should be assisted before, during and, usually, after their diagnoses? As I have said about this matter in other topics, the worst that could happen if someone is incorrectly self-diagnosed is an awareness that a mistake was made. I hope to believe that WP exists for such mistakes to happen occasionally without the fear that an individual will be insulted for his mistake.

I hear you GD. Some of the community do routinely show that respect and sensitivity to everyone here, and thank goodness for them. Others (not so many) routinely show disrespect, and most are somewhere in between.

Some of it is just thoughtless, rather than malicious. Thoughtless like the "hypochondriac" thing - hypochondriacs switch between perceived symptoms and causes frequently and obsessively, they have a disease of the week - they don't focus on their sole central condition which they can historically track throughout their life, as ASD people can and do. Hypochondriacs aren't interested in making connections between their symptoms and the relationship to culture - the political and social impacts of being neurodifferent- that ASD people so typically do - eg underemployment, being misunderstood, unable to tolerate very noisy environments, dislike for verbal instructions, multi-tasking, love of animals etc, immune issues, etc.. Hypochondriacs aren't focused on much outside their internal perceptions. The difference is so huge that the comparison astounded me.

Last edited by B19 on 15 Jan 2015, 6:30 pm, edited 1 time in total.

I think there is a need for some policy articulation on this issue on WP. I can relate to all that you say. Particularly as such a huge percentage of the ASD community has been bullied during their lifetimes and the incidence of lingering PTSD relating to that can result in many adverse consequences when the memories and feelings of bullying and invalidation from others in the past is triggered. It is dangerous to allow pack bullying on WP, and in December, that was happening, as you will no doubt vividly recall. One of the most offensive bullies has disappeared thank goodness, a sock puppet perhaps...

I mostly lurk and have read some of those threads, much of it has been quite off-putting and I agree some of it struck me as bullying. I'm self-diagnosed ... however my son is officially diagnosed and I have a constellation of birth defects/anomalies that are diagnostic for a syndrome that has a high rate of autism co-morbidity. I wonder how those people would feel if any of them with a diagnosis who couldn't also prove they had a verifiable gene mutation linked to autism was now considered to have just been a convincing faker. I consider some of them trolls.

Last edited by Washi on 15 Jan 2015, 6:48 pm, edited 1 time in total.

It is explicitly stated, with 100 percent certainty, that WrongPlanet is an inclusive website--and not just for people who are professionally diagnosed with an autism spectrum disorder.

I dislike that members have left because of passive and overtly aggressive attitudes regarding their ‘status’ as self diagnosed. The soft target ethos is distasteful, especially from the linguistically competent, going for the obvious Achilles heel reminds me of the bully boy tactics in the school yard.

I don’t think hatred for hierarchies can be applied as a blanket ASD trait, generally speaking humans like power, control and order.

Stuff rolls downhill, I think to varying degrees most people experience this, in the social dynamics of the workplace, their home life etc and everyone has different method of coping.

The self-diagnosed wars certainly made me think about throwing in the towel and leaving WP. Instead I spent a few weeks in the 'off the wall' section until it all died down. The openly hostile diagnosed members seem to feel threatened by the self-diagnosed. It's as though they're afraid their identity is being 'watered down' by what they perceive as 'fakers'.
The arguments were like a power trip for these people. Sometimes your ego is all you have.

Yes, WP is an inclusive website as a guiding principle, Kraftie. Though how that inclusiveness is implemented, encouraged, protected, monitored and maintained is not explicit, and this is what may need to be considered. I still think it's probably a policy level (Alex) issue, (not a moderator level issue - the mods have plenty to do already).

Alex HAS explicitly stated that this is an inclusive website--on a number of occasions.

Perhaps he should be more active in conveying that fact whenever "flame wars" break out over diagnostic status.

The very fact that one has choices as far as diagnostic status is concerned is icing in the cake. That, alone, should make it evident to a reasonably intelligent person that this site is not merely for the professionally diagnosed. If it was, there would be no choices of that nature.

That seemed to be going on a lot. It was extraordinary how the offensively hostile went to the extreme of running several threads simultaneously, the same hostile members used multiple threading to carpet bomb people who disagreed with them. And that was tolerated - not so inclusive, in my view.

It must be noted that some of the other/professional-diagnosed strongly disagreed with the openly hostile posters and defended the option to self-diagnose (sometimes there is no other option anyway) and distanced themselves from the hostility. They were then attacked too...

AspieUtah, I suspect that you described a set of reactions to the invalidation that many others did too, not just those who participated on the battlefield... you wrote: "I felt invalid, illegitimate, malingering and less-than-worthy of continue to play a part of WP, let alone a diagnosis whether performed professionally or personally. I doubted my intentions, my research, my understanding of professional literature and even my screening-test scores.." I think that is a very moving summary of some of the more typical actual/potential harms. Autists suffer from invalidation for much of their lives; to experience it here can be a devastating hurt. I experienced a deep sense of betrayal.

I don't understand the contentiousness about this issue. Why one should care about the diagnostic experience of another? But some seem threatened by the self-diagnosed.

For Asperger's or Level one adults who have been professionally diagnosed - I would dare say most started as self-diagnosed. I sort of did. Then a psychiatrist said that he agreed and would make a preliminary diagnosis until he can complete a more formal evaluation for a sort of final and official formal diagnosis.

I mean if a person wheezes and is short of breath when they are around cats it is safe to say that they have asthma with an allergy to cats. There is nothing illegitimate about that self-diagnoses

If a person examines the diagnostic criteria for ASD and they meet criteria and multiple tasting supports that - well there is nothing illegitimate about their self-diagnoses.

For me it was reinforcing to have a professional do an evaluation and make a diagnoses. But I realize there are many reasons why many people cannot do that - financial is certainly a major one.

If parents on the spectrum are shamed here, and they internalise it, there is the added damage that this sense of shame gets picked up by and contaminates the self-perceptions of their children too - highly sensitive children can profoundly sense the unspoken and that is another kind of collateral damage.

As you say - in different words - it would be pretty sad for the "hostiles" when or if the day comes that completely reliable biomarkers are established (possibly not so far away, IMO) and they tested negative.. though some denial would then probably kick in (the test was wrong, wrongly administered, biased, only true for some not others etc) - the 100% former confidence in "professionals" that some of that group have previously expressed might rapidly vanish as quick as an eyeblink.

It's not so much about the validity of self-diagnosis, but the perception of an individual who claims to have a "hidden" condition - a condition that is not as obvious as a broken leg or missing teeth - that makes many people (especially the NTs I know) express the opinion that the individual is some type of hypochondriac.

Case in point: I have asthma. Most of the time, it's under control, so I can even tolerate a little smoke in the air for a short time. Rarely does it get out of control, except during allergy season, when I'm stressed, or when the air is visibly full of dust, smoke, or fumes. The last few weeks have seen all of these conditions at the same time.

So, the other day, an attack came on suddenly, and I could not find my inhaler. My co-workers wouldn't believe that I was suffering at all. Some called me "faker" and "hypochondriac", and laughed while I ran gasping into the parking lot (my inhaler was in the car). If it wasn't for the fact that my personnel file lists Asthma on the front jacket (with an official, written diagnosis from my GP inside), I could have been reprimanded for causing a disturbance. As it is, my co-workers are the ones who received the reprimand.

Here's the point: A self-diagnosis may explain everything to the person making the diagnosis; but without an official, written diagnosis from a properly-trained and licensed medical professional, the self-diagnosed person runs the risk of being labelled a fake, a fraud, and even a hypochondriac by people who have no clue as to what is really going on in the mind and body of the self-diagnosed individual.

The "contentiousness" is between those who want to be taken seriously for what may be a perfectly reasonable self-assessment, and those who see no reason to take their word for it without documented proof.

Personally, my current stance on this is that a self-diagnosis harms the individual when it leads to self-medication with substances that are either ineffective or that cause more harm than good. Otherwise, there are a lot of people in the general population that are even more skeptical than I, and that are downright cruel in their treatment of what they consider "fakers" and "hypochondriacs". These people will stand around and laugh while an asthmatic suffocates, an epileptic has a petit mal, or an aspie has a meltdown just because they don't believe it when the victims try to explain what is wrong with them.

At least an official diagnosis on record gives you the legal standing to seek restitution when your needs are not being met in employment, housing, or educational opportunities.