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ASPartOfMe
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01 May 2019, 12:33 am

The Concept of Neurodiversity Is Dividing the Autism Community It remains controversial—but it doesn't have to be

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Neurodiversity is related to the more familiar concept of biodiversity, and both are respectful ways of thinking about our planet and our communities. The notion of neurodiversity is very compatible with the civil rights plea for minorities to be accorded dignity and acceptance, and not to be pathologized. And whilst the neurodiversity movement acknowledges that parents or autistic people may choose to try different interventions for specific symptoms that may be causing suffering, it challenges the default assumption that autism itself is a disease or disorder that needs to be eradicated, prevented, treated or cured.

Many of those who adopt the medical model of autism call for prevention and cure of the serious impairments that can be associated with autism. In contrast, those who support neurodiversity see such language as a threat to autistic people’s existence, no different than eugenics.
No wonder this concept is causing such divisions. Yet, I argue that these viewpoints are not mutually exclusive, and that we can integrate both by acknowledging that autism contains huge heterogeneity.

Before we address heterogeneity, a technical aside about terminology: The term “disorder” is used when an individual shows symptoms that are causing dysfunction and where the cause is unknown, whilst the term “disease” is used when a disorder can be ascribed to a specific causal mechanism. The term “disability” is used when an individual is below average on a standardized measure of functioning and when this causes suffering in a particular environment. In contrast, the term “difference” simply refers to variation in a trait, like having blue or brown eyes.
So what is the huge heterogeneity in the autism spectrum? One source of this is in language and intelligence: As I hinted at, some autistic people have no functional language and severe developmental delay (both of which I would view as disorders), others have milder learning difficulties, whilst yet others have average or excellent language skills and average or even high IQ.

What all individuals on the autism spectrum share in common are social communication difficulties (both are disabilities), difficulties adjusting to unexpected change (another disability), a love of repetition or “need for sameness,” unusually narrow interests, and sensory hyper- and hypo-sensitivities (all examples of difference). Autism can also be associated with cognitive strengths and even talents, notably in attention to and memory for detail, and a strong drive to detect patterns (all of these are differences). How these are manifested is likely to be strongly influenced by language and IQ.

The other source of the huge heterogeneity is that autism is frequently accompanied by co-occurring conditions. I mentioned gastrointestinal pain or epilepsy (both examples of disorders and sometimes diseases), dyspraxia, ADHD and dyslexia (all examples of disabilities), and anxiety and depression (both examples of mental health conditions). This is just a partial list. A recent study shows that 50 percent of autistic people have at least four such co-occurring conditions (including language disorder or learning difficulties), and more than 95 percent of autistic children have at least one condition in addition to autism.

The relevance of this for the neurodiversity debate is that if we dip into the wide range of features that are seen in autism, we will find differences and disabilities (both compatible with the neurodiversity framework), and we will find examples of disorders and even diseases, which are more compatible with a medical than a neurodiversity model.

Regarding scientific evidence, there is evidence for both neurodiversity and disorder. For example, at the genetic level, about 5-15 percent of the variance in autism can be attributed to rare genetic variants/mutations, many of which cause not just autism but also severe developmental delays (disorder), whilst about 10-50 percent of the variance in autism can be attributed to common genetic variants such as single nucleotide polymorphisms (SNPs), which simply reflect individual differences or natural variation.

At the neural level, some regions of the autistic brain (such as the amygdala, in childhood) are larger, and others (such as the posterior section of the corpus callosum) are smaller. These are evidence of difference but not necessarily disorder. Early brain overgrowth is another sign of difference but not necessarily disorder.
Post mortem studies of the autistic brain reveal a greater number of neurons in the frontal lobe, suggesting that there may be reduced apoptosis (or pruning of of neural connections) in autism, but again this may just be evidence for difference rather than disorder. Against this, structural differences in the language areas of the brain in autistic individuals who are minimally verbal are likely to be a sign of disorder.

Functional MRI (fMRI) studies at times show less or more brain activity during different tasks, and again this can be interpreted in terms of difference and disability, but not clearly evidence of disorder. On the other hand, where autistic individuals have demonstrable epilepsy with a clear electrophysiological signature, this is a sign of disorder or even disease.

At the behavioral and cognitive levels autistic people show both differences, signs of disability and disorder. For example, young autistic toddlers may look for longer at non-social stimuli than at social stimuli, and autistic people may show their best performance on IQ tests on the Block Design subtest, perhaps reflecting their strong aptitude for attention to detail and disassembling complex information into its component parts.

Both of these are simply differences, compatible with the neurodiversity model. Aspects of social cognition reflect areas of disability in autism, and are often the reason for why they seek and receive a diagnosis. But if an autistic person has severe learning difficulties or is minimally verbal (defined as having fewer than 30 words), this is arguably beyond neurodiversity and more compatible with the medical model.

In sum, there is a case for all of the terms “disorder,” “disability,” “difference” and “disease” being applicable to different forms of autism or to the co-occurring conditions. Neurodiversity is a fact of nature; our brains are all different. So there is no point in being a neurodiversity denier, any more than being a biodiversity denier. But by taking a fine-grained look at the heterogeneity within autism we can see how sometimes the neurodiversity model fits autism very well, and that sometimes the disorder/medical model is a better explanation.

What is attractive about the neurodiversity model is that it doesn’t pathologise and focus disproportionately on what the person struggles with, and instead takes a more balanced view, to give equal attention to what the person can do. In addition it recognizes that genetic or other kinds of biological variation are intrinsic to people’s identity, their sense of self and personhood, which should be given equal respect alongside any other form of diversity, such as gender. But to encompass the breadth of the autism spectrum, we need to make space for the medical model too.


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01 May 2019, 1:09 am

I think autism is "just a difference" in only rare cases. I thing in general, and in my case, it's a net negative, so I consider it more of a disorder, disability, or disease. I would like to significantly increase areas of my ability and doing so would change my fundamental character in a way I would welcome, because then I could provide for myself.

Like, autism is the kind of difference that requires lots of other people to pay for programs and services for the benefit of autistic people. I think more work would get done if that happened, and the world would be a better place because torture and genocide and to a lesser extent eugenics are generally bad things, but still, it's a difference that requires special assistance, because the person is less able, which makes it a disability.

So I agree with Baron-Cohen that there's room for the medical model, and that model is actually the one that should typically apply. If you just don't like walking without a crutch, that's just a difference and people should look at you funny for using a crutch, because that's just weird. If you can't walk without a crutch, that's different.



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01 May 2019, 2:26 am

I wonder whether this debate would be going on so much if there hadn't been the ASD 'umbrella', under which it's now all fitted.



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01 May 2019, 8:09 am

firemonkey wrote:
I wonder whether this debate would be going on so much if there hadn't been the ASD 'umbrella', under which it's now all fitted.

Most things in life be they physical conditions such as cancer or burns or mental conditions such as depression fall under a large “umbrella” without this debate.


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01 May 2019, 10:02 am

The difference being there's not really a plus side to cancer and depression.



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01 May 2019, 10:48 am

The difference is there is basic agreement about the definition of most other things in life. There is no agreement as to what Autism is or if it is one condition or if it is a condition at all.


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01 May 2019, 11:06 am

ASPartOfMe wrote:
The difference is there is basic agreement about the definition of most other things in life. There is no agreement as to what Autism is or if it is one condition or if it is a condition at all.


If there is no agreement as to what Autism is then how can there be a diagnostic process for it?



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01 May 2019, 11:35 am

While I'm rather cautious about some of Baron-Cohen's speculative ideas about autism, I largely agree with what he says there. In fact, one of the reasons that autism never occurred to me before diagnosis was that I always had seen my traits as separate aspects of myself which I categorised differently. The idea that they might have a root cause (assuming that they do) would never have occurred to me - why would I equate my fascination for knowing how things work in great detail (rewarding personality trait) with my social bewilderment (cause of mental illness)?


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01 May 2019, 11:48 am

firemonkey wrote:
ASPartOfMe wrote:
The difference is there is basic agreement about the definition of most other things in life. There is no agreement as to what Autism is or if it is one condition or if it is a condition at all.


If there is no agreement as to what Autism is then how can there be a diagnostic process for it?

A label was needed so they put a label on a bunch of traits that seemed like they belonged together that enough people had.


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16 Aug 2019, 9:10 am

firemonkey wrote:
ASPartOfMe wrote:
The difference is there is basic agreement about the definition of most other things in life. There is no agreement as to what Autism is or if it is one condition or if it is a condition at all.


If there is no agreement as to what Autism is then how can there be a diagnostic process for it?


There is a diagnostic criteria published in the DSM-5 which guides clinicians who assess and diagnose it. But there is more to "Autism" than the technical diagnosis; It's an identity to some, an explanation to others. Even an excuse for some (See Don Burke justifying sexual harassment)



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16 Aug 2019, 2:12 pm

If only I can describe it, but whatever how it is phased...


It has something to do with the term of "accountability".
If I tried to specify what I'm thinking... Ah, it'll turn into some funny too-long-strings of word salads.





Here's my (incomplete and very unrefined) attempt: Do not read if you don't want to have any headaches.
Something that has impairments, but so do competence. But then, as not every cases of autism have both...
Sure, there's this human rights -- the right to live, right to have the basics, etc. But there's something complicated about that, and it has something to do with the environment at large. But whatever it was, it's currently unavailable -- maybe impossible to accommodate.
On accommodations; it doesn't simply cover one thing. Unlike the scale of severity of many conditions, it has it's specific thing -- when autism has too many not limited to physical, mental, and emotional factors -- internal and external. There were 'dimensions' of these factors -- already in each autistic individual.

So; arguments sides whose main factor is internal, in which grants competence and disability, another is external that has something to do with accommodations and how things are just is.
The one argues that it should be respected as the external is hostile therefore. Or that former should be cured or treated because external is hostile.
Then mix the mixed views of each individual sides -- if that side whose environment can cater NDs because of their internal factors can handle it, or that the environment can't because of ND's internal factors, or that NDs can't handle it because of external factors, or that, the environment can cater varying conditions except for a few that happened to slip pass through the safety nets.

In case of autism, it's divided by... Language and intelligence. If only people knew that neither factored much except presentation -- or 'manifestations' if some prefers.
While language usage alone is a stupid way to measure one's capability and doesn't take account of other else, this kind of discrimination isn't limited to autism -- it's just the only thing that most people knew. I mean, people at large aren't willing to learn languages of the few let alone one -- and this 'language' isn't limited to speech and writing, but also body language and just communication in general. If one measures the usage of language alone, and that alone... It doesn't take account of other things.
In case of intelligence, it seems people had yet to keep up with measuring the gaps that is adaptability. So what if you got intelligence, when you cannot present it? It isn't enough to take account of intelligence alone in autism.

It's, like, showing visual and auditory overstimulation and call it that -- nope. There are more sensations other than visual and auditory, it's just that no one could simply present that.
The same with language and intelligence -- over adaptability and everything else.

The shared impairments of autism -- when does this enter when? And it seems that it's whole story had yet to be told. Again, where exactly is the impairment came from? Internal or external?
On which scale of vulnerability is which? And so forth. That includes said vulnerability towards mental disorders.
Except, mental disorders -- well, no.

Study of the mind isn't well developed yet. There's still this shame culture towards mental health issues overall.

The speculation isn't shocking to me. I dunno about the other audiences and how they make of this...
But yes, the medical model -- except there should be some sort of hybrid model... One that caters not only some sides of quarter more or less, nor is very one-sided.

As for individuals themselves... People, in general, tend to associate themselves with their most admirable traits than their whole -- autistics and autism as a factor are no exception.


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17 Aug 2019, 12:50 am

firemonkey wrote:
I wonder whether this debate would be going on so much if there hadn't been the ASD 'umbrella', under which it's now all fitted.

No, the autistic rights movement pre-dates the DSM 5 by at least 20 years. Even among people who fit the DSM 4 definition of what was then called "autistic disorder," there was such a thing as "high functioning autism," as it was then called, although HFAs were a minority among people with "autistic disorder." The autistic rights movement started in the 1990's and then began to get some serious traction in around 2006 or so.

The autistic rights / neurodiversity movement was NOT founded primarily by Aspies. It was founded primarily by HFAs who had been severely disabled as children, e.g. Temple Grandin, Donna Williams, and Jim Sinclair.


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17 Aug 2019, 12:58 am

Trogluddite wrote:
While I'm rather cautious about some of Baron-Cohen's speculative ideas about autism, I largely agree with what he says there. In fact, one of the reasons that autism never occurred to me before diagnosis was that I always had seen my traits as separate aspects of myself which I categorised differently. The idea that they might have a root cause (assuming that they do) would never have occurred to me - why would I equate my fascination for knowing how things work in great detail (rewarding personality trait) with my social bewilderment (cause of mental illness)?

Actually, the current definition of Autism Spectrum Disorder does NOT imply that all your traits have a common root cause. ASD is not a singular thing, with a single cause; it's just a way of categorizing people who have certain kinds of traits in common. Based on recent genetic research, it would appear that there are thousands of different possible underlying genetic causes.


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17 Aug 2019, 1:07 am

Dan82 wrote:
Like, autism is the kind of difference that requires lots of other people to pay for programs and services for the benefit of autistic people. I think more work would get done if that happened, and the world would be a better place because torture and genocide and to a lesser extent eugenics are generally bad things, but still, it's a difference that requires special assistance, because the person is less able, which makes it a disability.

The services, at least for the more "high-functioning" autistic people, would be a lot less expensive if the autistic rights movement had its way. If more of us could work in autistic-friendly workplaces, then there would be far less need to try to get us to conform to NT norms, hence less reason to pay ABA therapists to try to do that. We'd still need to learn enough social skills to be able to get along with each other and with autistic-friendly NTs, but that would be a far less arduous set of social skills to learn. (See the separate threads Autistic-friendly social skills vs. blending in with NT's and Autistic-friendly workplaces.)


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17 Aug 2019, 5:01 am

[quote="ASPartOfMe"]The Concept of Neurodiversity Is Dividing the Autism Community It remains controversial—but it doesn't have to be
[quote]

Another good post! Interesting that B.S-C should acknowledge, on one level, that autistics deserve the same protections as other minorities, when he regularly displays a blinkered view on the subject, as here:

“…whilst yet others have average or excellent language skills and average or even high IQ.”

S.B-C is easily the smartest of the many autism researchers I’ve encountered, and about the only one capable of original thinking, so why doesn’t he realise that the bell curve for IQ in autistics is very like for any other population (though given the unusual frequency of both ret*ds and geniuses, it may be flatter than usual)?

Then there’s “What all individuals on the autism spectrum share in common are social communication difficulties (both are disabilities)...”.

Well, no; autistics only have such difficulties in social communications with non autistics (which is unfortunately the usual case) and it can be argued that it is the need that non autistics have for these so called social skills, that is the disability. Would it really be so difficult for those other to learn to say what they mean, and mean what they say? Most, when asked, would agree the World would be a better place if they did.

The major reason for this confusion is that, like most people, he doesn’t distinguish between “autism” and “autistic”.

Historically, “autistic” came first, long before Leo Kanner coined the term autism, to describe subjects he apparently considered to be autistic. Most people (as displayed in this thread) now use “autistic” as an adjective of autism, which is plainly wrong; “autistic” being one of those aspects of the psyche which together determine our personalities (everybody has an autistic segment, ranging from very weak to very strong: though mister average in all the other traits, I score from very weak to very strong in the autistic) and thus has an existence in its own right.

Most autistics, if we adhere to the “lower than average IQ” diagnostic, do not have autism; they are separate issues! Researching the prior art should clarify this point for those of you prepared to take the trouble.

The situation only became more confused when Lorna Wing started misapplying the autism label to another dozen or so disorders (and also Narcissistic Personality Disorder, which may not be, but otherwise differs from being autistic by just about every measure; no way do these two belong in the same category, let alone be part of anything called a spectrum!) without any reference to any aspect of personality, rendering it without a trace of scientific merit.

Another peculiarity of S.B-C is that, though he has grudgingly admitted that Newton, Einstein, et al were autistic (the evidence is, after all, overwhelming) he still seems to think they achieved great things despite being so, and seems unable to grasp what should be obvious; they were so capable exactly because they were autistic! You’ll probably never find this acknowledged by anyone connected to the autism research industry...



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17 Aug 2019, 9:22 am

gwynfryn wrote:
ASPartOfMe wrote:
The Concept of Neurodiversity Is Dividing the Autism Community It remains controversial—but it doesn't have to be
Quote:

Another good post! Interesting that B.S-C should acknowledge, on one level, that autistics deserve the same protections as other minorities, when he regularly displays a blinkered view on the subject, as here:

“…whilst yet others have average or excellent language skills and average or even high IQ.”

S.B-C is easily the smartest of the many autism researchers I’ve encountered, and about the only one capable of original thinking, so why doesn’t he realise that the bell curve for IQ in autistics is very like for any other population (though given the unusual frequency of both ret*ds and geniuses, it may be flatter than usual)?

Then there’s “What all individuals on the autism spectrum share in common are social communication difficulties (both are disabilities)...”.

Well, no; autistics only have such difficulties in social communications with non autistics (which is unfortunately the usual case) and it can be argued that it is the need that non autistics have for these so called social skills, that is the disability. Would it really be so difficult for those other to learn to say what they mean, and mean what they say? Most, when asked, would agree the World would be a better place if they did.

The major reason for this confusion is that, like most people, he doesn’t distinguish between “autism” and “autistic”.

Historically, “autistic” came first, long before Leo Kanner coined the term autism, to describe subjects he apparently considered to be autistic. Most people (as displayed in this thread) now use “autistic” as an adjective of autism, which is plainly wrong; “autistic” being one of those aspects of the psyche which together determine our personalities (everybody has an autistic segment, ranging from very weak to very strong: though mister average in all the other traits, I score from very weak to very strong in the autistic) and thus has an existence in its own right.

Most autistics, if we adhere to the “lower than average IQ” diagnostic, do not have autism; they are separate issues! Researching the prior art should clarify this point for those of you prepared to take the trouble.

The situation only became more confused when Lorna Wing started misapplying the autism label to another dozen or so disorders (and also Narcissistic Personality Disorder, which may not be, but otherwise differs from being autistic by just about every measure; no way do these two belong in the same category, let alone be part of anything called a spectrum!) without any reference to any aspect of personality, rendering it without a trace of scientific merit.

Another peculiarity of S.B-C is that, though he has grudgingly admitted that Newton, Einstein, et al were autistic (the evidence is, after all, overwhelming) he still seems to think they achieved great things despite being so, and seems unable to grasp what should be obvious; they were so capable exactly because they were autistic! You’ll probably never find this acknowledged by anyone connected to the autism research industry...


S.B-C has gotten some incorrect criticism. The “Extreme Male Brain” theory caused offense because of common American macho stereotypes of muscle bound, hard drinking, partying, women chasing, misogynist male despite stating he was talking about systemized thinking. American clinicians and laymen often tell female autistics they are not autistic because they don’t fit these male stereotypes not necessarily because they do not fit what S.B-C. was trying to say. If he used another word instead of male he would have been less misunderstood.
His autistics have a theory of mind deficit theory has been misinterpreted to mean autistics have no empathy, sympathy or feelings. That has become a harmful stereotype.

I can agree that the chances of an autistic to autistic relationship not turning hostile is less than an autistic NT relationship. But some Autistics and NT’s do get along, autistics will have communications difficulties with some other autistics and plenty of NT’s are direct/blunt.

Claiming historical figures were autistic is a questionable exorcise. We must have an accurate description of the person through their whole lives. We have to often rely on others including NT’s description of the person. We rely on words that may have changed meaning and context over the years. We can suspect a person was autistic based on documented traits and their own words, we can not know they were. In my almost 6 years of being on this site and other autistic spaces I am weary of “retro diagnosing” because I have seen it used as a crutch way to often. People often start to think the only reason I am not succeeding is because the NT world does not understand my honest intent and genius. First of all only Einstein was Einstein, Autistic or NT one may be very smart but the odds of one being that smart are quite low.

From what I have seen most knowledgable people do not conflate an autism diagnosis with a low intelligence. This is 2019, not 1969.


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