"Autism Self-Diagnosis Is Not Special Snowflake Syndrome"

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conundrum
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14 Nov 2015, 6:11 pm

wilburforce wrote:
It is quite literally true--on a neuro-physiological level--that when you've met one autistic person, you've met one autistic person. Our neurological wiring is indeed unique, from one autistic to the next, varying from each other in a way and to a degree that neurotypicals generally do not vary from each other. In that sense, we actually are "special snowflakes". :lol:


Which pretty much renders the entire argument obsolete. :D Next time someone uses that slur, just bury them in a long technical discussion about how "correct" it actually is. That should shut them up. :lol:


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14 Nov 2015, 6:34 pm

iliketrees wrote:
How do you sign up to these studies anyway? I wanna see my brain :)


I didn't exactly sign up--the psychiatrist I was seeing at the time was also an active researcher as well as a clinician, and he happened to be starting a study on structural abnormalities in bipolar brains and I was early diagnosed as bipolar and also have a family history of bipolar I disorder so I qualified and he asked me to participate. It was just lucky coincidence in my case.



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14 Nov 2015, 6:37 pm

zkydz wrote:
I read the article. The uniformity of the NT brain is intriguing. It could help rule things out though at the very least and provide a starting point.

And, in my case rule in or out the possibility.

For instance, if the fMRI is conclusively on the NT type of functioning, it could point to something that is masking as ASD.

I have no idea what that could be, but will be interesting to find out.

Thanks for providing the link :)


No problem. :) Neurology, and the neurology of autism specifically, is an area of intense curiosity for me--I gobble up information on it whenever I can find it, and I bookmark articles like that when I come across them. I am excited for the next 10 years or so of neuroscience, what we can learn as our scanning technology improves and becomes more widely available for more studies to be done.



League_Girl
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14 Nov 2015, 6:43 pm

I would also be interested to see my brain activity, see how aspie it is and how NT is it.

My mom is someone who will talk about autism making it sound like it's environmental because she has told me several times that if I had stayed in special ed full time, that self contained classroom, I would have grown up to be air quotes autistic because I would have learned all the negative behaviors and mimic them and taken them to adulthood and be lower functioning because it was the environment I was in growing up so I thought it was normal behavior.

But from what I understand, normal kids don't mimic negative behaviors, my husband certainly didn't despite also being special needs. Yes some special need skids to mimic behaviors from others which is why we have inclusion and why parents don't always want their kids in special ed with other disabled kids. They want them to learn normal behavior and learn how to act normal so they want them exposed to normal kids who can model appropriate behavior. I say if you do have a kid on the autism spectrum who mimics behavior they see, you would not want them in that self contained room and they have a better chance at learning social skills since they are mimickers so you would want them with normal kids, not with other autistic kids or they could mimic their behaviors. Every kid with it is different so not every one of them is going to display the same behavior and no parent wants their kid to act more autistic and get worse, they want them to get better and act less autistic as they get older, not more.

I think sometimes autism behavior is blamed on others or the environment such as if one had an autistic parent so it's easy to say they have poor social skills because of their parent. I could blame my bad social skills on my father but then explain why aren't my brother's social skills bad? They have the same dad as me. So I find it hard to believe that a kid can mimic the symptoms and still continue doing them due to a parent with it. I have heard stories about siblings mimicking their autistic siblings but I am sure they grow out of it. I was in a self contained room so it's easy to blame my behaviors on that classroom and other kids and my problems of trying to figure out the rules and understanding right from wrong or say I was still learning to communicate so I mimicked the behavior and blame it on this also. I can remember my therapist telling me in high school how parents will sometimes blame a behavior on the environment than say it's part of the kid's disability so no way it's their Asperger's. People will even sometimes blame behaviors on the parents saying the kid does it because the parent let them. They don't punish them enough or enforce it enough so the kid keeps on doing it because they allow it. My dad's cousin was someone who seemed to believe Asperger's was learned behavior and it can be prevented if you parent the kid and not let them get away with things. I am sure there are some autistic kids out there who do things because their parents let them. I often wonder what will happen if an autistic child loved to flick light switches and open doors all the time and pushing buttons and the parent stops them from doing it and they lock all the doors to keep them from opening them or they take off all the doors in their house to stop that sound and they keep them from flicking light switches and pushing buttons, then what? Does the kid have a meltdown or what or get violent? I am sure if it was that simple to get them to quit, they wouldn't be letting them do it.


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B19
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14 Nov 2015, 6:45 pm

From the horse's mouth: some fatal flaws in the DSM criteria:

https://www.psychologytoday.com/blog/sa ... ion-autism



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14 Nov 2015, 6:48 pm

I can actually prove to a certain amount that there is nature and nurture in all of us. But, it is strongly disposed to nature (genetics).

This is one aspect of being evaluated this way would be beneficial.


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wilburforce
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14 Nov 2015, 6:55 pm

In regards to your first question:

B19 wrote:
1) If psychology is the study of learning, how can it accurately be applied to behaviours stemming from innate neurology? The DSM committee has no answer to this, other than implied (and unscientific) one of "because we say it is".


I think what needs to happen is that the studies of psychology and neuroscience need to be merged. We need to completely change our understanding of the human brain and how it functions before we can get a handle on concepts like "innate neurology" because of things we are just beginning to learn about, like the extent to which the brain is not a fixed structure or machine but has inherent plasticity and is always changing throughout our lives. Another interesting source I found to expand on the idea of "innate neurology" and how "unfixed" our wiring potentially is (I love CBC documentary programming :heart: --sorry that it's in pieces but I couldn't find a whole video on youtube and I don't think you can view direct on the CBC website from outside the country):









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14 Nov 2015, 7:00 pm

B19 wrote:
From the horse's mouth: some fatal flaws in the DSM criteria:

https://www.psychologytoday.com/blog/sa ... ion-autism



Well, ain't you just a ray of sunshine? LOL :lol:


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zkydz
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14 Nov 2015, 7:03 pm

wilburforce wrote:
--sorry that it's in pieces but I couldn't find a whole video on youtube and I don't think you can view direct on the CBC website from outside the country):



Sigh....In the US it says unavailable in your country......


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wilburforce
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14 Nov 2015, 7:14 pm

zkydz wrote:
wilburforce wrote:
--sorry that it's in pieces but I couldn't find a whole video on youtube and I don't think you can view direct on the CBC website from outside the country):



Sigh....In the US it says unavailable in your country......


The Youtube links didn't work, either? I don't know where else to find the videos; the only thing I can think to suggest if you know how is to try one of those add-ons to your browser that can fool websites about where you are surfing from so you can access material like that. The one I've tried for Firefox that seems to work pretty well (though it slows my browser down so I only use it when I want to watch videos like this and then disable it afterwards until I need it again) is call Hola, should be able to google it or something like it. Once you install it you can instruct it to tell websites you are browsing from the US (if you're outside the US) or the UK or wherever.



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14 Nov 2015, 7:29 pm

conundrum wrote:
B19 wrote:
The assertion has been made in this thread (without any evidence) that the self-diagnosed are harming the formally diagnosed, presumably because "normal people" look at the self-diagnosed (not that the self-diagnosed tend to go around announcing publicly that they are on the spectrum anyway, but that's another issue) and judge them harshly in a way that adversely affects the "really diagnosed". The problem in this kind of global and targeted assertion should be obvious: for the sake of consistency, the disgruntled who are claiming that non-autistic people falsely viewing themselves as on the spectrum fail to see that a similar harm then must be being done to them by people who have been falsely diagnosed as autistic by professionals..

These 'false believers' would seem far more likely tell 'normal' people, because a professional said they were autistic. So according to the haters of self diagnosis, the wrongly diagnosed must be doing even more "damage" to the standing of the rightly diagnosed. There is only a deafening silence on this, because logic doesn't drive the anti-self-diagnosers attacks; other factors drive it, and observable characteristics which seem to be part of that seem to be: youth, life dissatisfaction, generalised resentment and possibly a need to release stored anger by displacing it onto a subgroup seen as less powerful and therefore easy targets for a pecking order assertion of dominance.


Very good points. However, since most people are socialized to believe that the word of a professional is infallible (unless one puts some research/thought into the matter), this will usually never even be a consideration. "A doctor said so" tends to equal "must be true."

Thanks for those points about issues with diagnosing AS that the "professionals" tend to ignore...it would be nice to see them raised and addressed "professionally." :D


I quess you were not around here when prior to the "self diagnosis wars" there was the "Aspergers is way over diagnosed" wars. Multiple concurrent threads with claims of a massive deliberate faking it or people fooling themselves and then professionals into diagnosis of non autistics as Aspergers for the same reasons excuse making, trendy etc. repeated claims that if you identify as Aspie you do that because you do not want to associate with "lower" "severe " Autistics, demands for the sake Autistic unity that Aspergers/Aspie not be used anymore. This line of thinking had currency outside of WP in blogs. It was the same idea these non autistics are going to make neurotypicals have negative perceptions of "real autistics". Actually to use the wars metophor is a misnomer, unlike the self diagnosed who fought back hard it was basically just me.

I admit for awhile there I felt that maybe I was wrong and to old and out of touch and there really are these hordes of Aspie wannabees out there. What made me go on was how disturbed I was to see Hans Asperger's name repeatedly slandered like that (and also the Ass burgers meme). While I knew Asperger was a hero the "Neurotribes" book has revealed so much more detail and made me appreciate his heroics in saving Autistics from Nazi Eugenics and discovering the Autism Spectrum. Recent members reading this must think they are reading about a different forum as Aspie and Aspergers is still commonly used. This thread reminds me we have come a long way with self diagnosis debate also. The Neurodiversity debate is for most part about the merits of the issue and not group shaming. WP is a an healthier place and that is needed because bieng autistic can be very tough.


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14 Nov 2015, 7:59 pm

Everyone growing up on the spectrum, diagnosed or not, self-aware or not, will experience the psychological and emotional violence of being shamed simply for being themselves. This applies later in life too, though it is in the formative years that being the recipient of unfair shaming is at its most toxic and prone to be damaging to the developing sense of self.

I think this is yet another hidden factor that possibly drives the attacks on self-diagnosis. Shame is so toxic that if it continues in an unhealed state, shamed people tend to act out by seeking others to shame. This is particularly sad when diagnosed people on the spectrum try to shame self-diagnosed people on the spectrum, because both the perpetrators and the targets carry the immense shared and painful burden of toxic shaming experienced in childhood.

It can take decades to overcome the childhood shame of "not being normal enough". Obviously, some never overcome it, but only try to avert new shaming being piled on top of the existing legacy. The shame we experience is a complex mixture of past humiliation, embarrassment, self-hatred, fear, hurt, confusion, anxiety, anger and feelings of being damaged and worthless, less than, unwanted, hated and stigmatised. Terrible feelings for a child to internalise and carry into young adulthood.

Possibly any new experience of failure at that later stage triggers all these old unhealed feelings once again and their terrible impact is freshly felt. Most adults on the spectrum, formally diagnosed or not - I would hazard to guess - carry around a significant portion of private unhealed pain; most of us always will.

If those surmises are correct, then I would go on to suggest that the internalised unhealed sense of shame is not, and can never be healed by the process of shaming others who are also on the spectrum. Shame drives a lot of attacks here of different kinds, it seems to me, but as a topic, autistic shame seems too painful to discuss and there are very few threads directly addressing how to heal the shaming that binds this community together in common experience.



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14 Nov 2015, 8:01 pm

<---always amused when those who are formally diagnosed claim their diagnosis is valid and not the diagnosis of a self-diagnosed...they were either diagnosed as children or diagnosed after MANY YEARS OF INCORRECT diagnosis such as bi-polar, depression, etc...yet somehow the expert's word is always correct...if so, why have so many here struggled for years with incorrect diagnosis until someone diagnosed them correctly with ASD?



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14 Nov 2015, 8:04 pm

UrchinStar47 wrote:
Now, IMO, self-diagnosis is OK, and I've rarely seen obvious signs that it was wrong, at least in communities of autistics. There were a couple of people with a mistaken diagnosis, IME, usually schizoid or schizotypal (I tend to confuse those two, anyway, one of those), but they're easy to spot due to their warped perception of physical reality and how it works.


It sounds like you mean schizotypal.

There's been some research into identifying similarities between autism and schizotypal and they found that autistic children and teenagers tended to have schizotypal traits.



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14 Nov 2015, 8:15 pm

All I know, is that I have been diagnosed with autism and I still get the 'you're not a special little snowflake' thing...and 'you are no different from anyone else' thing...and 'the world doesn't revolve around you' thing...

So whether you are self-diagnosed or professionally diagnosed, it seems to make no difference imho.

B19 writes: Oops I posted this in your post rather than separately, I am sorry SoMissUnderstood:
Yes. Habitual shamers (whether NT or not) don't tend to apply much discrimination, anyone can be fair game because their objective to make themselves feel better at the cost of making you feel worse. Being diagnosed hasn't stopped the name-calling directed at one of my (formally diagnosed) grandsons; it increased the name calling, and that he was designated "autistic" at school in earlier years simply encouraged other kids to insult him as they felt more entitled to sneer the r word at him. Formal diagnosis worked against him not for him in a number of ways, and our family would never subject another child to it.



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14 Nov 2015, 8:58 pm

This again? For or against, I wish this topic would die a natural death. Everything about this argument seems silly to me - like who wouldn't want to be special and different? People who are actually different. It's then you realise it isn't as romantic as everyone makes out. As said above, so called "self-diagnosis" is acceptable, even good, in other areas such as alcohol /drug abuse. Diagnosing yourself as an alcoholic or addict can literally mean the difference between life and death. The problem is denial, and refusing to admit it. As for the infallibility of doctors' diagnosis - for so many people on the spectrum claiming to have high IQ, this should be a no brainer. Doctors are wrong constantly, often to disastrous results. Wouldn't be taking this as fact in any case.


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