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Cyllya1
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10 May 2015, 10:54 pm

I wanted to run these ideas by you folks. It's the understanding I've come to after seeing both the "cure" and "acceptance" viewpoints, but it's contrary to the official definition of autism and I don't see this distinction discussed much....

I’ve started to think of neurodiversity (e.g. autism spectrum) as being a perfectly okay non-disabling trait that has a high likelihood of being packaged with some other traits that actually are disabling.

Before I go further, let me do an analogy. Diabetes is a health problem. Generally no one is going to argue that diabetes is not a health problem. Although any cloud can have a silver lining, diabetes is unquestionably a Bad Thing that we would all like to not have. Diabetes treatments are important, and we would like to have a cure for diabetes. In the USA, black people are more likely to have diabetes than the general population. That does NOT mean that being black is a health problem! They're not even the only ones who get diabetes. It might make sense for social services to focus a little more diabetes help to the black population or for parents to give their black kids more diabetes prevention advice, but if anyone suggested that we need to find a "cure for black," everyone would think they're nuts and rightfully so. Actually, it's not just diabetes, there are a lot of problems that differ in prevalence by race, and the African-American population tends to get the short straw on a lot of them. But even if it were possible (and it probably is) to make black kids look indistinguishably like white kids, that's not a worthy goal. That wouldn't even fix most of their problems. The only thing it would fix would be people discriminating against them, but that problem could be better solved by everyone else not being racist.

I feel like neuro-types are the same way. It seems like all of the negative characteristics of autism fall into one or more of these categories:

A. There is another disorder which describes that problem (e.g. Social Communication Disorder, Social-Emotional Learning Disability, Sensory Processing Disorder, Executive Function Disorder, etc)

B. A lot of non-autistic people have that problem, and they are impaired by it despite not having autism (e.g. low IQ, everything in category A)

C. A lot of autistic people don’t have that problem (e.g. non-verbal, low IQ, etc)

D. Lots of autistic people have that problem but it’s not even part of the official diagnostic criteria (e.g. auditory processing problems, executive function problems—previously this was the case with sensory problems too! And I've heard a lot of us have gastrointestinal problems for reason.)

E. It’s not legitimately impairing, but many non-autistic people will look down on you and treat you badly because of it (e.g. unusual body language, non-disruptive stimming, sometimes even introversion)

The problem comes from the way neurotypicality and autism are defined. The ASD diagnostic criteria does not accurately describe the real problem.

There are probably a lot of people who are more similar to autistics than they are to NTs but they are considered NTs because they don't fit the sketchy diagnostic criteria for ASDs. Some may be disabled by autistic-typical problems that are not in the diagnostic criteria, or some may have autistic-typical problems that aren't bad enough to cause "clinically significant impairment," and some may be totally non-disabled altogether. But there isn't a word that collectively refers to these people and the people who are or could be diagnosed with ASD. There is no research about this type of people or this type of brain. Since it's exclusively considered a disorder, there is very little value-neutral research or information about the strengths and weaknesses of this group compared to other groups. The trait is considered to be a disorder because it impairs people, but only impaired people are considered to have that trait.

NTs are called NT because they are the majority, but I bet they could be divided into more precise categories if they weren't defined solely by their lack of an ASD diagnosis. Maybe some of those hypothetical categories have a higher likelihood of certain problems or impairments. For example, autistic people sometimes have a problem with non-literal language, but I've seen a lot of people (not all or even most NTs) who apparently have the opposite problem: they have difficulty taking things literally when they're supposed to, they read non-existent inferences into things, and it seems to cause them problems.

I can't help but think if we had better language for different neuro-types, we'd have better research, and everyone would benefit.

I say "probably"/"maybe"/"seems" so much, and I don't provide any stats to support these ideas, because as far as I know, these things aren't studied from this perspective or any similar perspective. Or maybe I just haven't heard of it?

This is why there's so much debate about looking for a "cure."
I WANT a cure for my executive function deficits.
I WANT a cure for my debilitating sensory defensiveness.
I WANT a cure for my gastrointestinal problems.
I WANT a cure for my debilitating social anxiety.
And I think I--and everyone else--should've been given some actual human relations education during those years I wasted in school, rather than having to home-school myself as an adult.
But I DON'T WANT a cure for my personality. I don't need a cure for my other harmless traits.

The above problems have ruined most of my life and will continue ruining it until I get some kind of treatment for it. But people who have a problem with my uncommon gestures, lack of eye-to-eye gaze, untalkativeness, or introversion can go screw themselves. But which of my traits are considered to come from "autism"?

Oh, yeah. This is kind of tangential but I want to clarify this one thing... The concept of "I'm not disabled; you're just a jerk" is not supposed to be any kind of alternative, correction, or supplantation of the concept of "I'm disabled and you need to stop being a jerk about it." Sometimes people pathologize traits that should be considered perfectly acceptable, and that's a problem. Sometimes people act like individuals with disabilities can't have any worth or value in their lives, and that's a problem. Those are two separate problems that both exist. Well, my point is, arguing that an alleged disability is an unfairly pathologized trait is not the same as arguing that all disabilities would stop existing if people would stop being jerks. Uh, hope that makes sense!


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11 May 2015, 7:38 pm

Itmade sense to me and I agree with premise.


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12 May 2015, 5:19 pm

The only problem with your post is that I don't know what autism is by your definitions now.


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14 May 2015, 4:25 pm

Cyllya1 wrote:
I feel like neuro-types are the same way. It seems like all of the negative characteristics of autism fall into one or more of these categories:

A. There is another disorder which describes that problem (e.g. Social Communication Disorder, Social-Emotional Learning Disability, Sensory Processing Disorder, Executive Function Disorder, etc)


Autism IS a social communication disorder, plus repetitive behaviors and/or restricted interests. Therefore, all of the negative characteristics of social communication disorders are negative characteristics of autism itself. Or am I not understanding something you said?

Cyllya1 wrote:
There are probably a lot of people who are more similar to autistics than they are to NTs but they are considered NTs because they don't fit the sketchy diagnostic criteria for ASDs. Some may be disabled by autistic-typical problems that are not in the diagnostic criteria, or some may have autistic-typical problems that aren't bad enough to cause "clinically significant impairment," and some may be totally non-disabled altogether. But there isn't a word that collectively refers to these people and the people who are or could be diagnosed with ASD. There is no research about this type of people or this type of brain. Since it's exclusively considered a disorder, there is very little value-neutral research or information about the strengths and weaknesses of this group compared to other groups. The trait is considered to be a disorder because it impairs people, but only impaired people are considered to have that trait.


There is BAP (Broader Autism Phenotype), if that is what you are describing. There has been a little research and a few articles on that.


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Cyllya1
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21 May 2015, 10:54 pm

Quote:
There is BAP (Broader Autism Phenotype), if that is what you are describing. There has been a little research and a few articles on that.


Ooh, thanks for that term! I looked it up, and it seems like what I'm trying to get at, but unfortunately, it seems to have a more negative conotation.

Knofskia wrote:
Cyllya1 wrote:
I feel like neuro-types are the same way. It seems like all of the negative characteristics of autism fall into one or more of these categories:

A. There is another disorder which describes that problem (e.g. Social Communication Disorder, Social-Emotional Learning Disability, Sensory Processing Disorder, Executive Function Disorder, etc)


Autism IS a social communication disorder, plus repetitive behaviors and/or restricted interests. Therefore, all of the negative characteristics of social communication disorders are negative characteristics of autism itself. Or am I not understanding something you said?


I probably should have said "Social (Pragmatic) Communication Disorder" instead, since "social communication disorder" is more of a catagory of disorders rather than its own diagnosis.

What I'm trying to get at is... most people who are impaired or disabled by symptoms of Autism Spectrum Disorder could have their impairments explained by another disorder or a combination of disorders, instead of ASD. For example, the social issues of SPCD plus repetitive behaviors caused by SPD.

Or to put it another way.... The prevailing idea among people who want to cure autism seems to be that the Broader Autism Phenotype is a bad thing, but not bad enough to be called a disorder, unless you have an unusually bad case of it, in which case it's called ASD instead of BAP. I'm arguing that BAP is a perfectly okay trait that unfortunately comes with a higher predisposition to certain disorders. I can't help but feel like people diagnosed with ASD actually just have BAP plus some other disorder(s), and it's those disorders that are the problem, not BAP or autism. Meanwhile, the people with BAP and no disorders aren't diagnosed with anything, which is how it should be.

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The only problem with your post is that I don't know what autism is by your definitions now.


I guess I feel like "autism" should refer to the broader autism phenotype (including the BAP-like traits of people who have ASD), but people aren't going to understand if I go around using it that way.


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22 May 2015, 12:14 am

Knofskia wrote:
Cyllya1 wrote:
There are probably a lot of people who are more similar to autistics than they are to NTs but they are considered NTs because they don't fit the sketchy diagnostic criteria for ASDs. Some may be disabled by autistic-typical problems that are not in the diagnostic criteria, or some may have autistic-typical problems that aren't bad enough to cause "clinically significant impairment," and some may be totally non-disabled altogether. But there isn't a word that collectively refers to these people and the people who are or could be diagnosed with ASD. There is no research about this type of people or this type of brain. Since it's exclusively considered a disorder, there is very little value-neutral research or information about the strengths and weaknesses of this group compared to other groups. The trait is considered to be a disorder because it impairs people, but only impaired people are considered to have that trait.


There is BAP (Broader Autism Phenotype), if that is what you are describing. There has been a little research and a few articles on that.


I didn't know that such a thing existed! I'll have to look that up; thank you!


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23 May 2015, 3:06 am

Do some people use the terminology of wanting a cure for their autism when they mean that they want an alleviation of the troublesome factors it poses for them? I want alleviation of certain features, for example - hypersensitivy to noise - though not a "cure", I am ok with being on the spectrum.

Hmmm just musing on this: I think it's true to say that NTs with troublesome conditions - eg Parkinson's for example - understandably want those conditions alleviated or cured, but they don't want to be cured of "NT-ness". It's the same for me; and what if a 'cure' for autism wiped out both the positives and minuses, where would that leave people?

Of course some will respond "but there are no positives", so ok, remove the negatives from them and what have they got left? Does that automatically make them into functional NTs?

Cure gets discussed in either/or ways a lot but rarely from a wider point of view - the assumption that there could never ever be any downside to a 'cure' is never really considered as a possibility by curebies.

I am suddenly mindful of the old saying about the road to hell being paved with good intentions.. curing autism is not say like curing cancer.. is it? Or is it? (According to Autism Speaks, the answer seems to be yes). However it's not a yes from me. I think the idea of perfect outcomes from a cure is probably a dangerous one ultimately. At worst curebie philosophy could lead to an open licence to experiment on ASD people "for their own good", and we know where that kind of thinking leads (if history teaches us anything at all)...



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23 May 2015, 11:44 am

B19 wrote:
Do some people use the terminology of wanting a cure for their autism when they mean that they want an alleviation of the troublesome factors it poses for them? I want alleviation of certain features, for example - hypersensitivy to noise - though not a "cure", I am ok with being on the spectrum.

Hmmm just musing on this: I think it's true to say that NTs with troublesome conditions - eg Parkinson's for example - understandably want those conditions alleviated or cured, but they don't want to be cured of "NT-ness". It's the same for me; and what if a 'cure' for autism wiped out both the positives and minuses, where would that leave people?

Of course some will respond "but there are no positives", so ok, remove the negatives from them and what have they got left? Does that automatically make them into functional NTs?

Cure gets discussed in either/or ways a lot but rarely from a wider point of view - the assumption that there could never ever be any downside to a 'cure' is never really considered as a possibility by curebies.

I am suddenly mindful of the old saying about the road to hell being paved with good intentions.. curing autism is not say like curing cancer.. is it? Or is it? (According to Autism Speaks, the answer seems to be yes). However it's not a yes from me. I think the idea of perfect outcomes from a cure is probably a dangerous one ultimately. At worst curebie philosophy could lead to an open licence to experiment on ASD people "for their own good", and we know where that kind of thinking leads (if history teaches us anything at all)...


Yes, they do mean they want alleviation of troublesome traits. I think this is where a lot of the confusion comes between the neurodiversity movement and the "curebies": the understanding of what autism *is*, is different.

Basically, curebies think autistic people are' NT people with autism', just like there could be an NT person with Parkinson's, or an NT person with paralysis, or an NT person with deafness. Getting rid of autism wouldn't make the person less talented any more than getting rid of paralysis would make a paralysed person less good at walking on their hands (and I know a girl who can walk on her hands- this is a real example!). Yes, her ability to walk on her hands, probably was inspired by her paralysis (from the waist-down), BUT if she could suddenly walk, she retain that ability.

As far as I know, we do not know what autism is definitively, so it's hard to say for a FACT that either side is wrong- although I know both sides have very strong opinions at times. I can see it both ways myself, but due to the fact that I do not believe a cure is possible, I think neurodiversity is a more realistic way to improve the quality of life of those on the spectrum.

As for the OP, I get where you are coming from, but do not 100% agree. My almost-16 year old son is still non-verbal and I absolutely think that's because of autism. I don't think he is autistic and has some other comorbid causing his lack of speech- there is no evidence to suggest that- I think he is non-verbal *because* he is severely autistic. Just my opinion.

Quote:
NTs are called NT because they are the majority, but I bet they could be divided into more precise categories if they weren't defined solely by their lack of an ASD diagnosis. Maybe some of those hypothetical categories have a higher likelihood of certain problems or impairments. For example, autistic people sometimes have a problem with non-literal language, but I've seen a lot of people (not all or even most NTs) who apparently have the opposite problem: they have difficulty taking things literally when they're supposed to, they read non-existent inferences into things, and it seems to cause them problems.


I thought 'NT' was anyone who is not autistic… so in other words, every other disorder in the DSM would be NT disorders, no? So they already are divided like that…? People who read alternative meanings into everything could be considered 'paranoid'- I am sure there is a disorder in the DSM for that type of thing in the extreme.


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23 May 2015, 12:40 pm

There are strong indicators that autism is different than other mental illnesses. Most other mental illnesses seem to be a transmission/receptor deficit in the brain's neuron firing schema, in autism there are indicators that the actual wiring of the brain is different. They are inherently different concepts, that's why autistics can have co-morbid illnesses-- different wiring and neuron firing deficits, but a person that has different wiring will by default be an autistic.

So where medication may solve most mental illnesses by allowing the neurons to fire properly there is no such thing for autism, nor will there likely ever be. To "cure" an autistic one has to rewire the brain, not just make the wires better at operating-- chemicals alone are inadequate for this task. The fact that current culture hears stories of mentally ill people recovering with help from "drug X" leads them to believe that every mental illness can be cured in this manner. Therefore if you have a mental illness there is a cure, as far as society is concerned. Unless a person has autism or an autistic in their circle they will not research and rely on "common knowledge" of mental illnesses to categorize an autistic.

As for society: the majority will always want those outside to conform to the will of the majority, the stronger the majority the more they will insist on conformity. It doesn't matter if a cure is good or bad for the individual, that they be "normal" (like the majority) is all that matters. It's written in human DNA all the way back to when animals started organizing in packs. Those that couldn't follow the pack were a distraction to the pack, one that could have negative consequences for the entire pack. Even autistics feel this urge, some lifelong, some adapt and tune it out. This is why there will always be autistics that want a cure, it's in their own animal nature to want to fit with the pack.

I personally believe undiagnosed autistics are a far larger group than anyone realizes. We say "That person has autistic traits." But in a lot of cases if we had the diagnostics we would probably conclude that they are in fact autistic, just not as fundamentally different in their brain wiring as what we categorize autistic today. That they can "fit with the pack" precludes the need for therapy, cure, etc.



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23 May 2015, 6:53 pm

WelcomeToHolland wrote:
B19 wrote:
Do some people use the terminology of wanting a cure for their autism when they mean that they want an alleviation of the troublesome factors it poses for them? I want alleviation of certain features, for example - hypersensitivy to noise - though not a "cure", I am ok with being on the spectrum.


Yes, they do mean they want alleviation of troublesome traits. I think this is where a lot of the confusion comes between the neurodiversity movement and the "curebies": the understanding of what autism *is*, is different.


Yeah, definately. I think differing ideas about the definition of the word "autism" is creating or confounding the problem, although the actual problem is different. Putting the word "autism" aside for a moment (sort of), there's the neutral traits of BAP, and there's the problems a lot of autistic people tend to have (sensory issues, language issues, etc). Those are two different concepts that both exist, regardless of which one gets to have the word "autism."

When people with autism want a cure for autism, they're usually using "autism" to mean the problems. When people with autism don't want a cure for autism, they're usually using "autism" to mean BAP traits. (There are exceptions to both of those.) When parents and researchers want a cure for autism... unfortunately, it looks like they're usually talking about BAP traits, or both. :(

Quote:
As for society: the majority will always want those outside to conform to the will of the majority, the stronger the majority the more they will insist on conformity. It doesn't matter if a cure is good or bad for the individual, that they be "normal" (like the majority) is all that matters. It's written in human DNA all the way back to when animals started organizing in packs. Those that couldn't follow the pack were a distraction to the pack, one that could have negative consequences for the entire pack. Even autistics feel this urge, some lifelong, some adapt and tune it out. This is why there will always be autistics that want a cure, it's in their own animal nature to want to fit with the pack.


Hmm, I've read a bit about modern hunter-gatherer societies, and apparently anthropologists believe that those cultures pretty closely match the way of life all humans used to have before agriculture. I haven't heard anything about what they do with people who are harmlessly weird, but the idea that they are ostracized or required to conform seems incongruent with what I have heard.

Plus, I don't feel like my BAP qualities keep me from fitting in. Why would it? Granted, one of the main BAP traits is introversion, and I live in an area where introversion is normal and advantageous. I've heard introverts are straight up oppressed in some places. Don't know how it ended up that so many autism researchers are extroversion-centricists.


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23 May 2015, 7:00 pm

I'm talking well before hunter-gatherer societies, I'm talking about genetics before species such as Sahelanthropus that we still retain. It's still instinctual, no matter how much civilization attempts to tamp out the animal nature of humans, it still remains.